One Tough Chick

Cuties for Clinic

2011-12-23T23:38:00.001-08:00

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October Clinic

2011-10-14T22:11:00.000-07:00

Woo Hoo! I'm updating in a timely fashion...I'm so proud of myself.
Clinic was exhausting this month. It always is for me though. You seem more annoyed by the inconvenience of having to drive "all the way a million trillion minutes to salt lake." You tell me every time clinic rolls around again that you wish I could just give you your chemo at home..."you've done it before" you say. As much anxiety and exhaustion as it gives me to go, I am actually glad for the visits. It is comforting to know you are getting thoroughly checked out. Its also comforting to know exactly where your blood counts are at and that you are still cancer free!

Getting chemo and still smiling!!

There seem to have been a lot of changes lately. I have found that I am not a big fan of change. Shocking.

First of all, they have upped your chemo the last 3 clinic visits! This is because your counts have been high. The first time they added one MTX pill per week. The second time they added 1/2 pill of 6mp per week, and then this time they added 1/2 pill of 6mp to 4 more days per week. Your new chemo schedule is as follows:

Mon-Fri: 1 1/2 6mp
Thursday: 6 Mtx (in addition to 6mp)
Sat.-Sun: 1 6mp

Then the regular 5 day pulse of steroids every 4 weeks. Ugh.

You used to be taking Septra also every Mon and Tues. but you have had a yucky rash on your face for months. After much insistence on my part, the docs agreed it could be the Septra causing the rash and they agreed to try something different. Because you still have to have a preventative antibiotic (and because they didn't want you to have to take anything for the full 4 weeks between visits) we tried an IV antibiotic called Pentam (Pentamadine). The down sides are that it takes an hour to administer, and it has a very high risk for severe allergic reaction. I wasn't thrilled but they watched you close and you did well. There are other side effects also. Loss of appetite, nausea, diarrhea, pale skin. All of which you had for several days following. Since the rash was gone I was going to request we switch to another option, which is a daily oral med, but the docs wanted Pentam one more time. They said if the rash is still gone next time we can switch then.

You look so tiny pushing this pole!

I debated which to do, but I think the idea of the daily oral is better. I didn't like the Pentam. When I can watch your body react to the meds as you get them...it freaks me out. Its like I can physically see the meds hit your little body. As the infusion goes on I can see your skin start to flush, then you get really sleepy, then your eyes get all watery....By the time its over you look like you've just run a marathon. I hate it. Your body doesn't react that obviously to the chemo!! Anyway... you haven't been eating, and your skins all pale....I hate cancer.

So, now I'm nervous. Not so much about the antibiotic as the new chemo doses. They like to keep your ANC between 500 and 1500ish. The last 2 months they were in the low to mid 2 thousands so they added a little chemo. This month they were only 1600 and they added, what I think is, quite a bit of chemo. So, my worry is that in 2 weeks(when your levels are rechecked) your ANC will have tanked, you'll have to go off all chemo, and you will get some random flu bug and we will get admitted to the hospital because your counts are so low. BUT, since this is the first time this has happened, I have decided to trust the docs this time...if what I fear happens then I will have to put my foot down next time they want to up chemo more than I think we should. I hope I'm worrying for nothing.

Well, as usual, you are perfectly amazing and awesome. Such a trooper. We decided to walk over and pick up your prescriptions from the pharmacy this morning. I got the double stroller out, but you insisted on riding your bike. To be honest, I didn't think you could do it. Its about a 1/2 mile away. Making it a full mile round trip. I figured you could make it there, but worried about the return trip. I don't know why...you did both ways with not a word of complaint!! How do you do it?

Best "two-wheeler" rider ever!!

You have also had a cough for the last 6 weeks or so. It just WILL NOT go away. I brought it up with the docs yesterday and they said it sounds like asthma. Awesome. So, we got a prescription for an inhaler to try for the month. If it helps the cough, we know its asthma (or some kind of Restrictive Airway Disease) and will decide on what to do from there. I don't know how I feel about this.

I do know one thing...I love you. I am so inspired by your attitude. Your desire to "push through" when you aren't feeling good, your love of preschool and learning in general. Your just amazing weemers.

Then on Thursday (before clinic) we got to go on your first field trip ever! It was to the Syracuse fire station and you were THRILLED!! It was especially special because Ry's daddy was working that day and got to do the field trip. It was really neat...they talked a lot about what to do in case of a fire and you have been talking about it ever since! At the end they gave your class Jr Firefighter badges (stickers) that you proudly wore to your clinic apt. You said, "Everyone at my doctors is going to see my badge and ask me where I got it. Then I'm going to say I got it at my field trip to the fire station, and they are going to be so excited and jealous." The funny thing is you were right on. Everyone DID ask about it, and you did talk every ones ear off about it. It was so cute!

Today, Friday, was Ry's birthday! You are now "twinner 5's" as you say. And on this special day of Ryan's birth I feel like I should share how much she means to us. Not just you, but our whole family. I have said it before, but I cant say it enough. WE LOVE HER! She has had an unconditional love for you during the good and especially the bad times. I will never forget how sweet and patient she was with you when you were at the peak of your steroid side effects, and could be down right mean. Or when she would lay there for hours and let you play doctor on her and "access her port". Or when you lost your hair and she came and watched you get it shaved...how she BEGGED me to shave hers too so you guys could be twinners! She always seemed to know how to act and what to say when she came over. She just "got you". Not only that but she was a wonderful distraction. You always knew you could play with her no matter how you were feeling and Ryan would adjust her play to how you were feeling. Still today she continues to be a joy every time she comes bursting into a room talking every ones ear off, and sharing every thought that comes into her sweet little mind. The way she cant get enough of anything...especially if it tastes good, and the way she lets you tease her then says..."your joking!!" We LOVE everything about her, and her bubbly zest for life! THANK YOU RYAN for being such a good friend to my wee mee!! We love you Ry, and wish you the bestest birthday ever!

An old post, and a new one...

2011-10-05T15:43:00.000-07:00

Ive given up on trying to catch up! The following was written on Aug. 31st...

This picture is just because I like it...

August clinic was 2 weeks ago (Thurs the 18th) It was going to be a boke poke day so you couldnt eat after midnight Wed. I made you toast as a little snack about 8pm Wed night so you wouldnt be too starving the next morning....

Then Thurs morning came and Alyssa found your sandwich (a quick dinner before a busy evening of running kids to soccer and tumbling) hidden in your room. Apparently you didnt feel like having peanut butter and honey. I felt bad because I didnt know you hadnt eaten until you COULDNT eat. But, oh well right? No.

Right before we left you said, "Mom, my legs feel shakey and they hurt....and I can feel my heart "beeping", and I have a headache all of a sudden." I felt bad for you, I said, "Oh sis you are probably just nervous..." You said, "Im not nervous mom, Im scared."

This is strange for you. You dont LIKE to get back pokes, but its more out of inconvenience than fear. You havent been "afraid" at clinic for a long time. I thought this was weird.
Then when we were on our way you were whiney and pretty tired. By the time we got to clinic you were asleep so I offered to carry you in. When I set you down in the chair of the RTU check in place you kind of curled into a ball...I asked if you were sick...you said, "No, just really sleepy." I'd say that was an understatement...as soon as I picked you up you were out like a light on my shoulder....SNORING even. (very normal for you...always been a noisy sleeper) I began to get concerned...usually you are pretty active once we arrive...nervous energy or something. You LOVE to do the craft before we get called back to a room, and love to visit with the nurses. Not that day. We saw Millie there and I could barely get you to lift your head off my shoulder...the craft was super cute fishies made out of paper plates you could paint....I couldnt even get you to stir. Then we did height and weight, sweet Pam gave you a mini Minnie Mouse doll to try to cheer you up, you barely even woke up to see it.

By the time Pam got us in a room I was really worried about you...actually starting to inwardly panic. You were almost totally unresponsive! Once we were sitting down (Im STILL holding you!) I leaned you back to wake you up and talk to you...your head just flopped and your eyes were glazed over and you were SLURRING your speech... I was about to get up and grab a doc when our FAVORITE PA Robert came in to say hi. (he wasnt even our doc for the day...just wanted to say hi) He looked at me, and said "Are you ok?" I told him I was getting really scared. I explained what had been happening and he ran out of the room saying he thought your glucose had dropped and he was on it. Almost instantly nurses were in the room. Two to access your port and draw blood for a rapid glucose test, and one with a bag of IV glucose for you. You SLEPT through everything...even getting accessed! Also scary. It took an hour and a half of being on the glucose drip before you even woke up!! Robert and nurse Tiffany tried to play it off like it was no big deal, but neither one left our room till you were awake and talking. They said they wanted to see you "come back to life" before they dared leave you. The look of relief on their face when you finally did said it all. I am SO GRATEFUL to the drs and nurses. Especially Robert. He said, "moms know first when somethings wrong, and I could tell by the look on your face something was definitely wrong." What a blessing to have a doc who "gets" that. SO grateful he trusted me and didnt wait till you were comatose to listen!

Looking back it was probably no big deal....you woke up happy as can be. The first thing out of your mouth was, "Mommy, I dont feel scared any more!" (how sad is that?) It was as if you had taken a nice long nap. To me, though, it was absolutely terrifying to be holding my baby and have her be completely lifeless, and unresponsive. HORRIBLE! I will never forget that moment. I was trying to be so calm on the outside in case you could hear me, but inside alarm bells were going off and I was freaking out. Needless to say I went home overwhelmingly exhausted, and you went home and played with friends! In the future, one thing is sure, I will definitely make you calorie load the night before a backpoke!!

I have met so many amazing people over the last year who have been through far more traumatizing experiences than this. Some have been told to hold their babies because they wouldnt make it through the night, and then against all odds, they did make it. And some whos babies have lost their fight against this terrible disease. This experience just renewed my sense of gratefulness to have you here with me. I dont know if I could live without my WeeMee, and my heart goes out to those who have to live without theirs. My heart just breaks thinking about it. What a blessing it is to know I am sealed to you for eternity, and you to me. What a comfort.

Well, because of your glucose issue, your counts were crazy off the charts. Your ANC was 6900, and your white count was something like 9,000. As a result Dr Frazier wanted to recheck your counts in 2 weeks (which is today) to see where you were at. They also upped your chemo. Last month they added an extra pill of Methotrexate per week, and this time they added a half a pill of 6mp per week. Well, unfortunately....one week before preschool starts.... your counts are only 700. Ugh. They want us to keep your chemo all the same and they will recheck levels at your next clinic apt in 2 weeks.

Im not going to keep you out of preschool. I think that would be a devastating blow to you. You have been counting down the minutes to your first day...and it cant come fast enough. I just hope this is the right choice. Its that time of year again, back to school, when all the viruses come out from hiding. Your sisters have only been in for 1 week and already you have a cold. Ugh.

We were very fortunate to get you into Candy Apple Cove. This place was a tender mercy of the best kind! Your teacher, Mrs Vicki, is amazing. Her preschool program is inspired, and her sanitizing skills amazing! My biggest concern for you going into this year is sickness from other kids. Mrs Vicki only has 8 kids per class! She also has experience with cancer. Her neice, tragically passed away of AML several years ago. She didnt pass away from the cancer...it was from an infection in her line. Also, this past year, she had been caring for her mom who had cancer. She could NOT afford to get sick so she cleaned and sanitized daily, ran an air purifier during class, and made sure the kids washed their hands as soon as they got there. She also will not hesitate to call a mom and send a kid home if they are sick, or tell them to take a day off if they are sick.

I had called her and expressed some of my concerns and asked if she would mind if I sent a letter home to all the kids parents so they were aware of the situation. I told her I didnt want all your classmates to miss out on school because of a minor cold, but I would like it of they would let me know if they were sick, or had been vaccinated so I could decide for myself whether I wanted to send you. She was so sweet and understanding! She even offered to be the one to right the note. She said she thought the parents might take it more seriously if it came from her, and they knew it would be enforced.

I seriously just feel so blessed. We have been so fortunate to come into contact with so many amazing people....and Mrs Vicki is one of them. I can already tell you love her and are so excited to go. I am excited for you too, but if it were up to me Id keep you home with me always.

On a lighter note, your hair is just amazing! It such a pretty blonde, and your curls are amazing. People are always commenting on it, and saying how pretty it is. Its finally at a length where people just think you have a short haircut.

We've been having so much fun this summer it was sad to see your sisters go back to school. I used to be the mom that looked forward to sending her kids back to school, because it meant I could get back to my strict routine, and have time during the day to get stuff done. I think this past year has changed that. I loved you all before this, more than I could stand, but I feel like I have a better understanding of how quickly this life can pass. And I want to cherish every moment. I have had so much fun, and taken so much joy in watching how much you and your brother and sisters have grown this past year. You are amazing kiddos. Im a lucky momma.

We've had some fun this summer too. We have been to "the beach" (pineview dam) a few times, and to some fun HopeKids activities. We have been to parks, and cancer walks, and backyard pools. Its just been so fun to spend time with you kids, and now I feel like an era is ending...heavy sigh. My how time flies...

October 5th...

My how time flies is right! Yikes. Since I wrote that post you have started school, started soccer, changed tumbling times, and taught yourself to ride a "two-wheeler". We have been busy with the regular routine of life, and I love it. Its been nice to have an uneventful October thus far. Last October was difficult.

Go team Tinkerbells!!

Dad was the soccer dragon...you guys had to try to
get the ball past him. Yes, those are soccer cones
on his ears! You are one lucky girl to have such
a fun dad!

First day of preschool! Behind that smile is a girl
who was DONE getting her pictures taken! Can we just
go to preschool now mom??

Another picture??? Stop mom!!

Your cute preschool class.

Miss Vicki is the coolest!!

I went back and re-read a lot of your blog. What a year and a half it has been!! Today marks the one year anniversary of the day cancer took your hair. I cant believe how far we've come. Cancer was all we thought about back then it seems, and now its just hanging out in the back of our minds. We dont worry about it, or you all time, and are so grateful for how far you have come!!

I am reading the biography of Gordon B. Hinckley right now. There is a quote in his book that sums up exactly how I feel about the last year and a half. He says, "I have been thinking about the road that led here. I know that I have not come that road alone, and feel very grateful for the many men and women...who have helped me. It is the same with each of us in the Church. No man proceeds alone....All of us are largely the products of the lives which touch upon our lives, and today I feel profoundly grateful for all who have touched mine."

I am so grateful to the many people whos lives have touched mine. For amazingly helpful neighbors and friends. For ward members who brought dinner, and countless unknown people who left gifts and uplifting words of encouragement. For our family who dropped everything to help us all the times you had to go to the hospital, and even came and did our laundry. For the people who sent packages that always seemed to arrive at the most needed times to lift and cheer you when you were sick....and especially for the many, many prayers I know were offered on our behalf. We felt them, and they gave us strength. How can I ever repay them? I cant, but I am thankful to them for making our burdens light when they seemed more than we could bear.

Today my worries about you WeeMee are different. I worry about making it through one more winter without you getting sick. I worry about whether to let you go to Church, or tumbling, or preschool. And lately I worry about relapse. I dont know...maybe I always will. The doctors say you have the best of the best odds for any cancer. Probably less than 5% chance. Thats a relief, but still.... No child should get cancer. Every child should be guaranteed a cure. I wish I could keep you in a bubble.

You are so funny. Last Saturday we were out front chatting with neighbors when I hear you yell, "hey mom, check me out! Im riding a "two-wheeler"!" I looked over and sure enough you were...what the?? No help, no, "mommy, hold my seat so I dont fall." Youre amazing, and as odd as that seems, its not that surprising. Its totally you. When you decide youre gonna do something (or not do it) you do it. Your bike riding skills have improved drastically in 2 days. This morning you woke up and said, "can I hurry and get dressed and go ride my 'two-wheeler', and can you call Angie and have Ry come out and ride her 'two-wheeler' and then we can ride our 'two-wheelers' together." I think you think youre pretty hot stuff, and you are! I watched you and Ry while you road up and down the sidewalk on your bikes. Your so small...but yet so big.

We celebrated your birthday a couple weeks ago too! I cant believe my baby is 5!! You woke up this morning and said, "oh good its cold. I think Ill wear some of my SIZE 5 PANTS." Youre so impressed with the fact that your five.

The weeks leading up to your birthday you were pretty funny. All you talked about was your birthday, and your birthday party, and what you wanted for your birthday. We went to the store to buy a special treat to take your class for your birthday. You had a badge on that said 'Birthday Girl'. As we walked into the store you said, "Do you think all the store people know its my birthday?" I said, "probably not." Then you said, "Well, its a good thing I have this badge on then!" You beamed with pride when people asked you how old you were, and you could say 5. Most people guessed you were turning 3 or 4. Your kind of small. But you dont think so...in the shower you said, "MOM, look at how big my leg is." I said, "whoa, thats big", you said, "Its like a teenagers leg!" I couldnt help but laugh. Youre obsessed with growing big.

We had the usual family birthday get togethers, but this year you had your first official "friend" birthday party. You were SO EXCITED! It was fun to watch all your little friends show up with gifts, and be so excited. We played Pin the Tail on the Donkey, did a ballon race, a craft, decorated cupcakes and ate them, and opened presents. I was worried we had too mcuh planned for the 2 hrs I had, but it proved to be quite the opposite. It was all done in an hour!! Luckily we have a fabulous playhouse in the backyard that was a perfect distraction.

You have been begging for a Bullseye doll for your birthday.
Apparently it was a hit cause you couldnt stop looking a it!!

Honestly, could you be any cuter!

Happy birthday, dear wee-mee!

Craft time with all your little friends!

I love this picture...you'd think pin the tail on the donkey
was the most fun game in the world.

Decorating cupcakes is delicious.

Lately Im just feeling so grateful for your health and strength. You DO have a yucky cold, but have only had 1 fever since March! What a blessing! I know the Lord is watching over us, and I pray that we can just make it through just one more winter on treatment. You will be officially done with chemo treatments on July 26nd, 2012. Woo Hoo!! Thats only 11 treatments left!! So much to look forward to...I feel like were on the downhill, and that feels good.

CureSearch...and other amazing things!

2011-07-17T16:13:00.000-07:00

To all of our CureSearch supporters (big and small!):

WOW! I don't even know where to begin to express my gratitude and feelings about all the support we received from you for our CureSearch walk. I have written and rewritten this post several times and cant seem to be able to express adequately how grateful I am. So I'm going to just say THANK YOU! Thank you so much!!

For your information...here are a few of the exciting things that happened.

1st- I had set a team goal of $1,000 that I was hoping to meet. I was nervous I wouldn't be able to pull it off. Uhhh...we blew it out of the water! Right now our team total is currently sitting at $3,415!! Woo Hoo! Go team McKall!! (PS-donations are going to be accepted for another 60 days...so feel free to continue to raise funds!)

2nd- I also set a goal to have at least 20 people join our team. I hoped that with family and friends we'd reach that number...but I was worried. I don't know why...we had 53 people join Team McKall! Some were family, some were friends, some were acquaintances, and some were people we had never even met! I am so grateful to all of you for joining Team McKall and helping us fund research for a cure!

and 3rd- Our CureSearch Walk goal was to hit at least $50,000....a lofty goal for an inaugural race. Uhhh...blew that out of the water too!! With over 1,400 registered walkers we raised $72,000 and counting!! The best race total so far this year!! YAY for Salt Lake City!

It was such an emotional day for me. I was truly amazed at all the supporters. There were "Team McKall" t-shirts all over the place...some on people I had never even met! I wish there was some way I could have got us all together for a picture... There are so many of you who came and I never got a chance to thank you...I am so grateful to you! Thank you!!

Chelsea (the cute girl behind you) is in our ward. She and
a bunch of her friends signed up and came in their
own t-shirts. We are so grateful for the support!!

The ceremony was amazing. I was in tears almost the whole time. It was heart wrenching watching the people come forward who had lost a child or sibling to cancer. They got to release a balloon and we all observed a moment of silence to honor them and their valiant fight. Watching their balloons float away was so emotional...I think its every parents worst nightmare. I couldn't help but think of the CureSearch slogan "These are the Reasons we Walk." I am so grateful to the many, many children who came before us. For their willingness to participate in the research that has made McKalls cancer so treatable. If it weren't for them, I would have been releasing a balloon for her. It makes me cry just thinking about it.

Amazing kids!

McKall was so excited to receive her CureSearch Champion medal! All kids currently in treatment, or who have finished treatment, are called Champions (isn't that a great title for these kids?) and received a medal. McKall got to say her name in the microphone and accept her medal...she was so funny she couldn't stop looking at it! Id say shes earned a thousand medals for all shes been through this past year...she truly is my hero!

Waiting excitedly for your medal...

Saying your name in the mic...

Staring and staring at your glorious medal...

Rubbing your medal...

Getting more comfortable while waiting for the rest
of your cancer friends to get their medals...

That being said...I felt overwhelmed by the number of kids on the stage receiving their medals. It was heartbreaking to me. I feel so grateful and even guilty about how well McKall has done. I know there are so many with the exact same diagnosis who have struggled so much during treatment, and comparatively we have breezed right through. There were definitely tough times...but I have seen and heard of so much worse. We truly have been so blessed.

When we got back to the car after the walk I noticed I had received an email. As I read it tears streamed down my face. One of our "cancer friends" had been in for his last routine MRI before hitting Maintenance phase, and got the most terrible news. His brain cancer has returned and is terminal. After 2 years of treatment, 2 bone marrow transplants, radiation, and countless chemo visits the cancer has returned and is extremely aggressive! It has already covered his brain and spine. The doctors say he has a few weeks, to a couple months. To say this news has rocked our close knit cancer community is a gross understatement. It is all of our worst nightmare and my heart is just breaking for this amazing family. The boys name is Daniel, he is 7, and he is amazing. His parents have taken him to Disneyland to enjoy his last few weeks and make some memories. If you would like to learn more about this amazing boy... you can visit his blog here.

Thank you for coming and supporting us at the CureSearch walk! Daniel, and McKall, and ALL of our cancer friends are the reasons we walk....for them, and for all those who come after. Your help really does make a difference!

Here are some pics of a few of the fun things they had going on before the ceremony started...

Of course Cinderella was there!

This silly clown was making animals...

You were mesmerized...

You told him you wanted him to make you a
princess hat and this is what you got!

Everyone got something!!

Just had to throw in a pic of the 2 greatest men in your
life...Daddy, and Mr T boy.

Now for a WeeMee update!

We have been having so much fun this summer! We haven't really done a whole lot of exciting things, but you are happy and healthy, and that is so fun to watch! We haven't had any fevers, or sickness (knock on wood), and your blood levels have been mostly perfect.

Well...., there are a couple of things I'm a little concerned about...but we have clinic on Thursday so I'm not going to let myself get worried till I talk with the docs. One concern is leg pain...you have been having excruciating leg pain every couple of days. It usually only happens at night. But its bad enough to wake you up, or keep you awake. The pain itself varies each time it occurs. Sometimes just a little of the "pink medicine" will nip it in the bud and you sleep great. Sometimes we give you the full dose of meds and it doesn't touch it. The only thing that calms you on those nights is a Priesthood blessing. Thank heaven for the Comforter. I hate to see you in pain, but I am so grateful for the healing and comforting power of the Priesthood! We NEVER would have made it through this past year without it!

The other concern is a rash you have on your face...I'm pretty sure its just a heat rash, but not positive. I thought heat rashes went away after you cool down but this one has been there for at least 2 weeks??? Sometimes its quite faded and you cant hardly see it, but the last few days it has been more pronounced. Your chemo makes you more susceptible to sun burns so we have been going through sunblock like crazy.... I'm wondering if its some kind of reaction to that too... I guess we'll see. I'm sure its nothing... You act and seem so happy and busy! You are a go-go-go-er...I cant hardly keep up. Its wonderful!

Here are some pics of some of what we've been up to...

Lemonade stands! You had about 6 customers...me,
dad, your sisters, and Kris and Angie. :)

You dressed yourself...blazer, necklace, hairdo,
pen, and notebook. Then you told us we
had to call you Rox. You said "thats Rox spelled
with an 'x'". Don't know where you got that from...
you said you just made it up.

The 4th of July parade...you said you wanted to
stand on the 'candy side' of the street!

My American girls!

We love face painting!

Waiting with Kate for fireworks. When you can
watch them from your backyard it draws a crowd... We
love sharing Americas Birthday with friends and family!

We went to 'the beach' (pineview dam) as you
like to call it. You're a water baby!

You kept dunking your head in the water to cool off...

We got a good laugh from your crazy hairdo after
the dunked hair dried! So funny.

I am so grateful for these last couple months of good health! I have enjoyed spending the summer with my girlies and men! I have the best family ever!

A long overdue update...part two!

2011-06-22T17:49:00.000-07:00

Next on our list of things to update is our trip to Disney World!! It was so much fun. We ran ourselves ragged and came home exhausted! It was so neat to be able to go and spend time as a family. It was fun to ride rides, meet some special characters, and just hang out.

The weather was PERFECT! It was in the low 80's all week with sunshine and even a little breeze. We couldnt have asked for better weather. It did get hot the last 2 days, but it wasnt unbearable. Which was good, because you tend to melt in the heat...

We were there on your 1 year diagnosis anniversary, and I couldnt think of a better place to celebrate beating cancer. There was a fireworks show at the Magic Kingdom. It was all about dreams and wishes coming true....it was so fitting for the moment, and I got emotional watching you jump around and dance to the music and fireworks. Im just so grateful you are doing so well, and looking so healthy. Not just looking healthy, but actually BEING healthy. All your counts keep coming back perfect! Honestly...could we ask for anything more??

Here are some pics of the events... (prepare for picture overload!)

Day one: Plane ride and hotel...

We werent due to check into our condo till
Sunday, but wanted to come a day early so we could
go to the beach. You guys loved the hotel breakfast...you'd
have thought "the lobby" was a 5 star restaurant! Pretty
funny girls.

Day 2: The BEACH, and the Congo (you and your sissies called it that instead of con-do)!

You had no fear when it came to playin in the water...
It was fun to see your amazement at the ocean...very
different from the "beach" at Pineview Resevoir!

I found a clam or mussel or something! It was totally
cool... I thought. It wasnt just the shell either...it was
all still in there and alive...it kept making creepy
breathing noises. Weird but cool.

We also found a starfish...which I kept. I felt
pretty guilty as it died a slow and painful death
on the dashboard of the rental on our way to the condo.
You were adamant we keep it so you could show Ry
once we got home. It was exciting for a bunch of
easily amused in-landers.

It was a beautiful day...looking at this picture I
cant help but wish I was there now. heavy sigh...

Our "congo" for the week. It was on a resort that had
several different pools with water slides and a lazy river.
There was even a golf course, some of which ran right
through our backyard. It was beautiful. We could
have spent a week there exploring and never got bored!

You and your sisters room. They chose to share a bed
and let you have your own...apparently you are a
pretty wild sleeper. You looked so tiny all snuggled
into those great big beds...it was cute.

Me and Daddy's room. Each room had their own
bathroom, so it was nice. You guys thought you
were pretty hot stuff!

A view of the dining and family room area.
The kitchen was to the right, and there was even a
washer and dryer...which was fabulous!!

Day 3: Universal Studios...Islands of Adventure

The Wizarding World of Harry Potter was amazing!
I have never read the books, and we have only seen
the first movie, but we still thought it was great.
That snow looks so real...hard to believe it was 85
degrees that day.

We met the Cat in the Hat, and to my surprise you
ran up and gave him a big hug. This has
always been one of our favorite bedtime stories.

Also met the Grinch...you kept asking me if he's nice in
the real life, or is he mean like in the movie. I love
this picture because you can totally see the aprehension
in your body language. You warmed up pretty quick though.

The dreaded Merry Go Round. I say dreaded because we
probably rode this ride 10 times! Literally. There were
a lot of big kid rides at this park so we did a lot
of waiting for others on the Merry Go Round.

The day was a lot of fun...as you can see from this
picture. We had to strap you in cause you were in such a
deep sleep you kept sliding out the bottom!

We ended the day by eating in a really yummy restaurant
in the park. Dad got in some good snuggles while we waited
to eat in the "Mermaid Cave"

Day 4: Epcot, and the Princess Breakfast!

We started the day in Denmark with some yummy
breakfast in this pretty building.

Even though Belle isnt looking at the camera, I had to
post this picture because I love how you are
looking at me. Like, "I cant believe Im holding Belles
hand!" You would NOT let go either. It was so cute and funny!

Heres a better one with Belle...youre doing the shy finger grab.
It was so fun to watch you try to take this all in.
I LOVED watching you see the princesses...

Sleeping Beauty!

Cinderella!

Waiting patiently with your autograph book for
more princesses to come to our table.

Snow White was my favorite of the breakfast. She
was so cute and sweet with you and Kate.

Ariel with legs!! You LOVED Ariel.

They had the most amazing shrubs! You were
excited to get your picture in front of the
huge-mongous golf ball.

Dancing while we waited for the fireworks show!

Look at those moves!! Go WeeMee!!

The best seat in the house!! You were glued to the show!

Day 5: Magic Kingdom!

We were only there 10 mins. and we ran into
this guy! You were wondering where Strombli was!
You think hes hilarious when he laughs and his belly
shakes and shakes. It makes you laugh out loud
every time you watch that show.

Then we ran into these two...

You took this pic on the Winnie the Pooh ride...

You were DYING to see these two. I guess Woody
was a little jealous cause you ran up and gave Jessie a
hug, so he wanted one from me! I obliged.

You didnt wanna leave Jessie...she was pretty cute with you.
She danced with you and hugged you and you ate it up!

Gotta love that castle! Gotta love that
family even more!!

Day 6: The Animal Kindom

I have to say I really didnt think this would be my favorite day on the trip. Ive always been a big fan of the Magic Kingdom, but this day was so fun, and relaxing. We took our time, and had a blast.

It was also a day of celebration...this day marked the one year anniversary of your diagnosis! We were so glad to be there with you at Disney World... instead of in the hospital hearing the dreadful news. While you went about enjoying the day, me and dad kept commenting on how far you have come and how much our life has changed for the better this past year. We couldnt help but feel so blessed to have you there with us...just enjoying the day!

The Tree of Life...amazing. It took a whole
year to carve all the animals in this tree. I wish I
could've gotten closer.

You LOVED the Safari Ride. You love animals
in general, but this was like an animal treasure hunt.

I love this picture! That dark shadow in the back
is actually a hipo! You and your sisters and
cousins are totally mesmerized.

They have a dinosaur playground that had a place
where you can dig for fossils. The dirt isnt dirt...its like
super small pebbles so you dont get dirty playing
in it. Genius. We had fun burying you...

...and your sisters!

We saw a ton of characters but I'll only post this
pic. King Louie (you call him King Gluey) is one
of dads favorite characters.

All in all...it was a great day!

Day 7: Back to the Magic Kingdom

We didnt take a lot of pics this day...I dont know why. We were all exhausted I guess.

We happened to walk through here just in
time to catch the parade!

Dancin to the music!

Right after the parade was over...thats sweat not water.
It was super hot that day!

Day 8: Hollywood Studios

This was a fun park, but not a lot for the little ones. You had a harder time this day cause you spent a lot of time waiting for everyone else to go on rides.

I forgot to mention...you measured in at 39 1/2 inches tall on this trip! Most of the rides required at least 40 inches, and they were making NO exceptions at any of the parks.(which I totally understand) It was hard on our only little dare devil to be left off so many rides. We even went to Target to find taller shoes... but no luck!

Annie and Leo were so cute with you. They gave you
a bunch of special attention!

You got TOTALLY into the shows. This pic
is of the Mickey Mouse clubhouse show. You
were on the edge of your seat at this one,
and the Beauty and the Beast show.

You LOVED the Honey I Shrunk the Kids playground.
You went down this slide about 50 times and wanted me to
take a picture of you going down EVERY SINGLE TIME!

It was pretty hot that day, and I caught you sticking
your head in a little fountain in the playground. Silly girl!

The spider web toy...you thought this was creepy
and didnt go in for a while.

Day 9: WERE HOME!

You woke up the morning after we got home and were so anxious to go play with Ry and Ty. You spent the whole day playing with them, and I think it was good for you to enjoy some unstructured play...so much of the previous week was all planned out.

At one point you all came out dressed like this and I said,
"Wow, you guys look fancy. Who are you supposed to be?"
You said," Ty's a princess, Im the queen, and Ry's the
one who saves the day." I had to laugh...it was a perfect
homecoming to a fun trip.

A long over due update..part one!

2011-06-21T13:01:00.000-07:00

Wow Wee-Mee! I cant believe its been almost 2 months since I last posted!! SO much has been going on in our family, but I am happy to report that it is all good! You have been feeling awesome, looking healthy, and been super happy and active. Who can complain about that??

We'll start with your May hair update...even though it IS the end of June!

I really dont think these pictures do it justice, but
you are pretty stinkin cute!

LOVING your curls, and its so much lighter
than it used to be!

So, since the last post, your playhouse was completed and moved to its permanent spot in the yard, we have been to DISNEY WORLD and back, totally remodeled our backyard, and we have had a Make A Wish Celebration party in our backyard!! No wonder I havent updated in awhile. Its been so much fun!

First, the playhouse! It has turned out SOOO cute. Here are some pics of the process from start to finish...

Daddy and Grampy finishing the cement...

You and Ry putting handprints, names,
and dates in the cement...

Daddy using his tractor to move the playhouse
to its official home...

To say this was nerve wracking for me would be
a gross understatement, but dad and grampy
didnt seem the least bit worried they could do it...

...and they were right, and you were SO HAPPY!

While were on the subject of playhouses, we'll show the pics of your Make A Wish Celebration party now. Even though its out of order from our list of things to update...

The party was just this last Saturday, June 18th. It was SO MUCH FUN! We had such a wonderful turn out. We have been so overwhelmed with all the love and support we've gotten this year, it was so nice to be able to share such a happy and uplifting event with all those supporters. You had tons of friends, cousins, aunts, uncles, grammys, grampys, and people from our ward come. It was a bit overwhelming to you at first...you are not one to love the spotlight, or to love talking to people you dont know. But you came around shortly after your "special guests" arrived. RAPUNZEL AND FLYNN RIDER!!

They were so much fun! They played games with all of the kids, and gave you some special one on one attention. Flynn was hilarious and had an entourage of little boys and girls wherever he went. That was ok with you cause you were totally in awe of Rapunzel and didnt leave her side the entire time.

It was such a wonderful event to be a part of. Make A Wish is such an amazing organization. The whole "wish process" has brought us so much to look forward to the last 6 months, and I couldnt help but feel overwhelmingly blessed as I looked out on the crowd of supporters we had at your party.

First and foremost, your AMAZING wish granters,
Tom Hagerman (he's been volunteering at
Make A Wish for over 10 years!), and lovely
Lezlie Barber (she brought you a Rapunzel doll, dress
and wig, which you wore the entire party!)

Macunzel (thats what Flynn Rider called you) in front of
her treat table! Favorite neighbor Angie made chocolate
covered strawberries, Tom brought a princess cake, and
Lezlie brought "One Tough Chick" sugar cookies!

One of your cute tables...

Me and you with some amazing people...YOUR
WISH SPONSORS! They are Bob Whitney, and Sharla
Ellis. They are a loan officer and real estate agent who are
working together to donate $180,000 of their OWN earnings
this year to Make A Wish! There are some amazing people
in this world...

A small portion of the amazing support we received
at your party, and over this last year. We have been
so blessed!

Rapunzel and Flynn Rider arrived and thats really
when the fun began for you and the other kids!

There was Freeze Dance with Rapunzel...

Red Light-Green Light with Flynn Rider...

Ring Around the Rosie with Rapunzel...

Rapunzel, WeeMee, and BFF Ry. Could you get any closer
to Rapunzel???

Raaaapuuuunnnnzzzzellll, let down your haaaaiiirrr...
and she did.

Flynn and his "smolder", Rapunzel hugging you
super super tight!

Every little kids dream house....did I mention they
brought furniture??? They did. Pics of that will
have to come at a later date...

I look back on what we were doing at this time one year ago, and I cant believe how far you've come! Last June you were at the height of your steroid side effects. Your cute little body was bloated and achey. You felt emotional, tired, and sick all the time. You were so sick, and that first phase of treatment was so rough on us all. At the time, dad and I were on auto pilot I think. Your daily care was exhausting, but we were just so grateful there was a treatment and good prognosis we didnt care. We were, and still are, so grateful you are here with us. You have truly earned the nickname "One Tough Chick." And we are so proud of you!!

Here are some pictures from last June so you can really see the difference...

I remember this day like it was yesterday...
it makes me cry to look at you hurting so much.
You were pretty sick. Look at that steroid belly
poking out of the bottom of your shirt!

This was the first time you tried to jump on the tramp
after you were diagnosed. It was bittersweet...so
happy to see you actually WANTING to do something,
but sad because your legs were so weak you couldnt
jump...thats why you are clinging to the net.

This was just a few weeks ago...look how HEALTHY
you look! Amazing what can happen in a year!

I wish I could articulate better how I feel about all that you have dealt with and handled with such grace, and with such a positive attitude. You have come out of this last year a more confident, happy, outgoing, positive girl You are such a blessing to our family.

Updates, hair and Gilly-isms...

2011-04-29T00:46:00.000-07:00

April has been good to us thus far! We only had one fever and we were lucky enough that it happened while we were already at clinic getting chemo. It made for a much longer clinic visit, but way better than having to go to the ER in the middle of the night!! Your fever was still hanging on the next afternoon so back we went to clinic for more IV antibiotics, but luckily it went away after Friday, and your counts were great!

Since clinic you have been feeling better and better everyday. What a blessing!! I swear I can watch you grow a little stronger everyday, and more and more like our old WeeMee. You go go go constantly and I'm having a hard time keeping up. Your sassy...oh so sassy. But I love that about you. You have always had a spunk and spark to your little personality, and it is so good to see some of that coming back. You are still LOVING tumbling and it is so fun to watch you. You try so hard. You give it all you've got, and you come home exhausted!!

Look at those muscles!

Easter was a lot of fun. The Easter bunny brought some long desired Pillow Pets and candy and you were thrilled. You have slept with and carried around the pillow pet ever since! We went to the West Point Easter egg hunt at the park on Saturday, and then did another Easter egg hunt at grammy's on Sunday. Then we all had a sugar overdose that night...ugh. I suggested that next year we need to tell the Easter bunny to bring fruit...that didn't seem to go over well.

Before...

during...

and after the city Easter egg hunt. Look at
those spoils!

Cousins don't let cousins hunt for Easter
eggs alone. (hard to believe you and
Katie are only 4 weeks apart in age...shes
a whole head taller than you!)

Yes, this was the best picture I got after
Grammy's Easter egg hunt.

The best and most exciting thing that has happened this month is that your Make A Wish playhouse was delivered!!! WOOT WOOT! The whole family was on pins and needles the whole week before...we were so excited we couldn't hardly stand it!! The blessed morning finally arrived and it was SNOWING! Right on time at 8AM, Colby (from Wood Manor Playhouses) showed up with his daughter to drop it off. Your sweet wish granters, Tom and Lezlie, were there too. (Proof that they are dedicated....they had to leave their homes at 7am on a Saturday morning to get to our house by 8am!!) They even brought doughnuts! We knew in advance that your playhouse wasn't all the way done so we warned you in advance so you wouldn't be disappointed. It still needed paint and carpet. The painters were due the following weekend but had to postpone due to weather. So they came several days later when the weather cleared up. The carpet man came just the other day and it is officially done!! It has been so fun to have it at our house and get to watch the progress made.

Make A Wish is such an amazing organization! I know Ive said this so many times before, but I cant tell you how good it has been for you to have this to look forward to. It has been sunshine to our souls this cold and wet and dreary and gloomy and sickly winter and spring. You changed your mind last minute and decided you wanted your playhouse yellow, instead of pink, (thank heaven) so now its the color of sunshine too! I am so excited for our backyard remodel to be done so we can move the playhouse to its "official" place. Daddy's going to pour a cement pad for it to sit on, and we are going to landscape around it like its got its own yard. I told you we could get some cute pots and plant flowers in them to put on your porch and you were so excited! You cant wait to water your own plants.

Braving the storm for this exciting delivery!

A porch swing! How cool is that?

Colby, the builder of the playhouse, kneeling
down to hand over a special surprise...
Your very own KEYS to your playhouse! Mommy
kept one of them "just in case...."

I wish I was more on top of our life and had more pictures of the process of finishing your playhouse. I feel like I am losing my mind a little and am so scatter brained lately! Life has gotten super busy around here with daddy's new calling and all the spring sports and recitals. I'm having a hard time keeping up. Luckily it seems to be getting easier and I know that if we all try our hardest the Lord will make up the rest.

Ive been reflecting a lot lately on this past year. We are coming up on the one year anniversary since your diagnosis and I cant believe how much our life has changed. How much I have changed. The computer shows a slide show of our pictures when it sits untouched for a minute and I catch myself staring at the pictures, and am in awe at all we've done. I can honestly say that if someone had told me a year ago what was going to happen on May 20th, 2010 I would've never believed I could deal with something like that. I would have wanted to run and hide somewhere. But when I look back on all we have been through and dealt with I can see the hand of the Lord. I am so grateful to my Savior for lifting me up and helping me through, because I know He did. I felt a strength from somewhere beyond myself. There were times when I was so tired and weak that I know He literally carried me through the day to day. I have truly learned what it says in Matthew 11:28-30 "Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart; and ye shall find rest unto your souls. For my yoke is easy, and my burden is light." I know that the Lord made my burden, and yours, light. That he truly brought rest to our souls.

I just heard that Dr. Fluchel had to diagnose 4 children in a 5 hour period with leukemia. I cant imagine having to tell one family that devastating news...let alone 4! I will always remember that day, when we got the news, and it was horrible. My heart breaks for those families, and I wish there was some way I could let them know that its going to be ok. That life is good, and that everything will turn out ok.

On a much lighter note...

April Hair...

These really don't do it any justice.

The back has grown quite a bit in the last
10 days, and you have little curls all over. So cute!

Cant believe how much lighter it is than it used to be!

Here's a "before" shot to compare hair.

You are SO FUNNY lately. You have always had a funny sense of humor and always made everyone smile with your silly questions and sometimes grown up sense of humor. Here are some of the latest Gilly-isms...

*In the middle of getting IV Fortaz (an antibiotic) at home.
"Mom, can daddy snuggle me while you give me my Fro-taz?"

**Walking into Primary for a fever..grammy was meeting us there...
"I sure hope grammy gets here quick so she can see how good I do!"

*After watching a less-than-exciting Animal Planet video on the computer...
"I am TOTALLY breaking up with this video!"

*After dad and sisters went to church and it was just the two of us...
Mom: "So... what shall we do...?"
You: "We should read scriptures... cause that's a good way to keep the "habit day" holy."

*Anytime someone teases dad, or bugs him for something.
"Guys, be nice to dad! Hes only one man!"

*You had been sick for quite a while, and had been in the hospital. (You said this a day or two after Carly's baptism.)
You: "Mom, do you remember when I was at Carly's baptizing?
Mom: "Yeah, wasn't that a special day?"
You: "Yeah, but I was really "impressed" there."
Mom: "You were? Wow, that's a big word for a little girl."
You: "I'm a big girl, that's why I know that impressed means, "really sad and tired and don't feel good so
           you fall asleep on your grandpa at your sisters baptizing.""
Mom: "Ohhhhh...sissy. I'm sorry. I think you mean DE-pressed."
You: (heavy sigh) "Yeah, that's what I said."

*When you were on weekly cancer treatments me and dad would always wipe you after you went potty cause your pee and poo were toxic and we wanted to make sure you got all the way cleaned off. Since you've been in Maintenance we have struggled to get you used to doing it yourself.
You: "Mom, I went potty and I wiped myself."
Mom: "Really?? Did you do a good job?"
You: "Yeah, you don't need to worry cause I wiped like a billion of times so I wouldn't get "skip marks"
           on my Dora panties."

*Talking in the kitchen after you took your nightly chemo.
Mom: "Do you remember when you used to have a hard time taking all your medicines and you would
            cry about it for a long time before you'd take it?"
You: "Yeah, that was right after I found out I had cancer... and I was totally WIGGING out! Wigging out
           means you cry a lot cause you have cancer and you hate taking your medicine."

*The day after a back poke and chemo we went to a high school basketball game half time to watch your sister perform. Your legs started hurting so I took you out to the car to let you lay down. You were quiet for several minutes then you said...
You: "Mom what happens to kids who struggle with math and reading?"
Mom: (I laughed then said...) "What do you mean sissy, where did you hear that...from a commercial?"
You: "Yeah, but what happens to them?"
Mom: "Well sometimes their parents hire a "tutor" to help teach them the things they are having a hard
            time with."
You: laughing..."A TOOTER!? Why a tooter...how can a tooter help them learn math and reading??"
Mom: also laughing..."A tutor is not a person who toots a lot, its another word for a special teacher."
(We were both laughing so hard you forgot your legs were hurting!)

* * *

By the way...If you are reading this blog and haven't signed up for the CureSearch Walk... then you should! We need you. We need awareness. Did you know that breast cancer is 99% curable when caught early? Do you know why? Ill tell you....FUNDING and AWARENESS! Everyone knows someone who's been affected by cancer. Please help us find a cure, and raise awareness. If you cant donate...come anyway!! The more people that come and support "the cause" the better! Thank you to everyone who donated!

A sweet little girl, and friend to McKall, named London had a bake sale and donated all her proceeds to CureSearch for Children's Cancer! Amazing! Even little ones can make a BIG difference! THANK YOU LONDON!! This means so much to our family.

Off my soap box... now here's the link to sign up or donate:
http://www.curesearchwalk.org/saltlakecity/onetoughchick

Updates and the CureSearch walk!!

2011-03-30T22:09:00.000-07:00

A note to readers: The following is a long post...if you don't have time to read the whole thing, or are only interested in info about the CureSearch walk...please feel free to scroll down to the bottom of this post for that info. Thank you!!

Once again its been almost a month since I last posted and a lot has happened. March proved to be much like February...lots of sickness and low counts.

First off...you got sick again and had to stay the night in the hospital. Bleh. You had woken up the night before screaming that your ear hurt so we gave you some Oxycodone and it didn't even touch the pain. You are NOT a wimp so I was pretty worried. I called the Clinic and they said I could just take you to see your regular pediatrician because you didn't have a fever. I called and made an appointment, and right before we were supposed to go you spiked a fever of 102 degrees so we ended up at clinic anyway.

Once we were there we followed the usual fever protocol (iv fluids, iv rocephin (antibiotic), blood draw for CBC and cultures, vrp (screening for viruses), and wait for counts). We were all ready to go except counts and were actually packing up to go when the nurse came running back and said, "Wait! Her ANC is only 100!! Your going to have to be admitted." What?? Your ANC had been 2300 exactly one week before so I was stunned to say the least. Not only that but your Hct and Hmg were hovering just above transfusion levels. Ugh. So we scrambled. It was a Thursday night...I had left Tucker with Angie and was worried he would be freaking out wanting to nurse and I was now stuck at the hospital. Luckily Grammy De Soto was in town and so was with us at clinic and was able to take our van and pick him up. Dad came and spent the night with you and I got the day shift.

The night you spent in the hospital you got your first (and hopefully last) neupogen shot. Its supposed to help you boost your counts. The docs didn't really want you to have to stay for 48 hours because they felt like they knew what was making you sick, and because you didn't seem to be getting worse so they thought the shot would help them get you home faster. Regular protocol calls for at least 48 hours inpatient AFTER a fever goes away. So...we were all hoping your fever would stay away and your counts would come up because Carly's baptism was Saturday.

Your fever DID stay away, but the 2 neupogen shots only brought your ANC up from 100 to 200. Double Bleh... Luckily Dr. Lemmons was the doc over ICS that day cause he said we could go home anyway...we would just have to give you IV Fortaz (antibiotic)every 8 hrs around the clock, and stop all oral chemo till your counts came up. I was fine with that cause your counts always seem to bounce right back up after such things....I was wrong. It took 10 days to get your counts up!

I am so glad we could give you the Fortaz at home because 10 days in the hospital would have been rough...but its exhausting having to wake up in the middle of the night to give it to you. I would have to wake up at 3am to get it out of the fridge so it could warm up to room temp. (if I didn't do this you would have a major cough attack every time the cold medicine hit your chest through your port), then get up at 5am to give it to you, and then hang out for 20 minutes while it ran through, then unhook you and flush your line. We also had to give it to you at 1pm and then at 9pm.

Sleepy Wee Mee getting her IV Fortaz.

I feel guilty complaining about this because we have so many cancer friends who have been inpatient a lot longer than us...but I was really struggling at the time. Two months of cabin fever and sick kids, plus daddy's been gone a lot with his new calling so I was feeling trapped and overwhelmed and exhausted to say the least!

I was so glad we were able to come home. You were so worried you were going to miss Carly's baptism... I told you we would reschedule if you couldn't come, but was so glad we didn't have to because Grandparents De Soto had come all the way from Nebraska for the special day. All is well that ends well I guess, and Carly's baptism was beautiful and so was she. It was such a fun and special day. I was so glad I could be there with ALL my family to enjoy it.

You've been blessed with good big sisters. They love you.

I think we are all feeling much better now though, especially you. I was so relieved when you started feeling better and actually wanted to play and have some fun with your friends and toys. It was a major stress relief for me to say the least. Id been worried about you for a long time. You just hadn't been yourself for awhile.

This is how you spent a good majority of your time for several weeks.

You got to stop Fortaz and start chemo 2 days before your regular clinic apt on Thursday (St Patricks Day) and were so cute at clinic. You really opened up and joked with the nurses and doctors. You kept saying, "oh man...there's no one to pinch...everyone has green on!" in the funniest voices while making silly faces. There was only one person who we could find that didn't have green on, and as luck would have it, it was YOUR doc. Dr Fluchel totally forgot to wear green so you giggled and pinched away. I bet that was a good feeling...not many kids get to pinch their oncologist! (I guess not many kids HAVE an Oncologist!!) We were in and out pretty quick and Nurse Carrie said she'd call us with counts.

We were on our way home when she called and said your ANC had dropped again to only 600. That's 600 BEFORE all the chemo you had just gotten and BEFORE all the chemo you were supposed to take that night. (Clinic Thursday is a big chemo day. You get: IV Vincristine, you start your 4 steroid pills twice per day, you take 5 Methotrexate pills, and you take your usual 6mp pill.) The nurse said that the doc wanted you to continue your normal chemo schedule and they would recheck counts with home health in two weeks. Usually they would check again after only 1 week, but the steroid you were taking for 5 days gives you a false high ANC number. So they come tomorrow to check your levels and I'm anxious to get the results. I really hope you counts are up...I'm nervous they wont be and we'll have to reduce your chemo dose. I don't like that. I hated the 10 days when you couldn't take it. It was hard knowing your immune system was down and you weren't taking anything to suppress those cancer cells. I never thought Id WANT one of my kids to take chemo.

Not knowing what all that oral chemo would do to further drop your ANC I just decided to treat you like you were neutropenic to just play it safe. Anything under 500 is considered extremely high risk for infection and its just not worth it to me. So, no church, and no store, and no crowds...including family. The only exception was Carly's baptism, and we made you wear a mask. I don't think you mind too much though...you would much rather play at Ry's house than run to the store with me. Even I would rather play at Ry's then go to the store!

Life seems to be returning to normal... and we definitely like normal. You have been jumping on the tramp, playing with Ry, riding Deuce, spending over at grammys, and even got to go to tumbling! It was fun to see you go. You were so excited. You had missed almost a month with sickness and low counts and were so glad to be back. You had definitely lost a lot of strength though, but worked so hard anyway. I could tell you were exhausted after the floor exercises which was only the first 15 minutes of class! You have tumbling tomorrow and are so excited. You told me earlier, "I'm gonna work so hard at tumbling and pass off one of my tricks! You're gonna be so proud of me, mom." I love how you enjoy every moment you are feeling well and just soak it up. I'm so grateful for your example that way. Here I sit complaining about giving you IV antibiotics... when you are the one who actually has to TAKE them. Perspective is something I'm still learning... and I'm grateful to get glimpses of the world through yours.

You love to ride Deucey! You always say, "Look mom,
Im riding him all by myself!"

Only a couple of other things to report.

One: Our family got to be pioneers!! Bro. Humphrey's in our ward is over all the Church Welfare. Well, they are building a new Welfare building that's over 500,000 square feet in SLC, and Bro Humphrey's wanted artwork in the foyer/visitor entry way to depict actual welfare in action. Well, there are not many paintings of that topic, and the Church is very picky about what hangs in their buildings. Long story short he got approval from the First Presidency to get a photographer to take photos depicting welfare scenes from actual church history! Namely the rescue of the Willie and Martin handcart company's! Well the photographer is none other than Mark Mabry (he has a couple books out called "Reflections of Christ" that are amazing photographs that depict events from Christ life)! I LOVE his books so I was so excited when we were picked to participate.

Not only were we picked to participate, but we got to keep all the costumes in our house so the whole cast could come try on, and pick out costumes. It was so fun watching you and your sisters try on pioneer dresses with pantaloons and bonnets. You all were so cute! It was also fun having so many others come, and get their costumes picked out. We met so many nice people. It was so neat to help organize just that small part of the project. We spent the 2 weeks prior to the shoot getting costumes ready, and studying up on the individual stories from the handcart companies. I was so amazed and impressed at the faith these pioneers had to walk 1,300 or more miles to get to their Zion. Pulling all they had in a handcart. Little did they know they would be caught in early snowstorms and have to cross frigid rivers and streams during blizzards!

The photo shoot was in the mountains above Huntsville and the location was beautiful. We sat in the snow with our handcarts and our freezing kids while the photographer snapped pictures. Some of the children were actually crying from the cold and I was fighting back tears as I thought of all the mothers whose children were literally starving and freezing to death and there was nothing they could do. I cant even imagine that. What a hopeless feeling they must have had, and yet they remained faithful (and grateful) for the gospel in their lives. I couldn't help but ask myself if I could have been so faithful. Id like to think so. Hopefully I'll never have to find out. I do know one thing...the Lord does bless you in the midst of your trials. I have felt closer to Him more in this past year than ever before, and I know its through our trials that He refines us and humbles us and helps us grow.

and Two: Tom Hagerman called (your wish granter) from Make a Wish and said they are going to deliver your playhouse on April 9th!! Woo Hoo!! (Only 10 days left!) We are all SO EXCITED to see it for the first time we cant hardly stand it. Tom said when its delivered it still wont be quite done. He said they have to have someone come and paint the inside, and that they are even going to furnish it!! I didn't know for sure about that part, but you are so excited! He also said that once its 100% completed they are going to throw you a celebration party to celebrate the completion of your wish! You have been so excited to have all your friends and family come and see your "Make a Wish" you keep asking me how much longer. It really couldn't be better timing...by the time they get it all completed it will be warmer weather and you can really enjoy it! Yay for Make a Wish! What a wonderful organization...we are so blessed.

I'm so grateful for how well you have endured the last year, and every day. You truly are an inspiration to me and you have definitely earned a special wish!

The Following is for all of McKall's fans who read her blog. This means you!! I have finally, and officially set up my website for the CureSearch cancer walk. PLEASE PLEASE PLEASE come and walk with us on July 9th and help raise awareness, and support for such a worthy cause as children's cancer!

Never in a million years did I ever think I would hear the words, "Your child has cancer." It was devastating and I cry at the thought that every day in the U.S. 35 children are diagnosed with cancer, and 7 of those children will not survive. We have been so blessed that McKall has done so well with her treatment, but did you know that 3 out of 5 children who DO survive cancer suffer devastating long-term side effects! There is only one thing we can do to be proactive...Research! Research helps us come closer to a cure. In the past 20 years research has brought the cure rate up from 30% to 80%!! Every single dollar is a dollar closer to a cure. McKall is proof that research is the key to finding a cure! (I'll get off my soap box now...)

I have chosen to support CureSearch because it is a foundation close to my heart. They fund the very research McKall has been participating in this past year, and I would LOVE to pay it forward. Some of our cancer friends have already benefited from new findings from this very research!!

All you have to do is log onto McKall's site and sign up. Its only $10 to register for anyone 16 and up and kids 15 and under are free! If you cant walk but want to donate, please do...every dollar helps! Please help us fund research for a cure...Cancer stinks! Lets help put an end to it!

http://www.curesearchwalk.org/saltlakecity/teammckall

THANK YOU- THANK YOU- THANK YOU to everyone who has helped support our family this past year! We have been truly blessed to be surrounded by so many wonderful people!

PS-Look for some upcoming events planned to help us raise funds for this cause...I'll keep you posted.

Is it Spring yet???

2011-03-02T19:45:00.000-08:00

I really cant believe its been almost a month since I last posted! I wont say I'll miss February...cause I wont. We had a lot of sickness at our house...

It started with Carly. On the 13th she woke up with a fever. The fever lasted 6 days. Poor Carly missed an entire week of school. She was miserable, and I hate that every time someone in our family gets sick I worry about you too. I never know how your body will react to sickness of any kind. Its always a worry that you could have to stay in the hospital and get really sick.

Next it was Tucker. He had already been fussy the whole week Carly was sick, but I didn't take him in to the doctor until Saturday morning when he woke up with both his eyes crusted shut, and I knew he had pink eye. Turns out he also had a major ear infection in one ear too. Poor kid...no wonder he was fussy. I just thought it was cause he was teething.

The next day it was my turn. I woke up Sunday feeling pretty crappy. I had a fever and body aches. That lasted through Tuesday. Wednesday I felt better.

Wednesday you got sick. I could tell by the look in your eyes you were miserable. Luckily your temp hovered right around 99.8 to 100 even so we didn't have to take you in that day. Thursday you woke up with a fever of 101.1 though so we headed down to clinic for fluids, antibiotics, and blood cultures. The fever routine. I sometimes wonder if I'm abnormal because I really wasn't worried about your counts. The nurse (Mindy-one of my favorites...love her) looked at me like I was crazy when I asked if we could go home now that your fluids and antibiotics were done. She said, "Uhhh...we haven't gotten her counts back yet." Oops...oh yeah. You had been there the week before and your counts were good so I just assumed they would still be good. I was right too...your counts were awesome! The doc and nurse both seemed shocked. I guess there have been a lot of kids getting admitted with RSV and Influenza A and B. Luckily all your cultures, and the virus scan came back negative. In fact your fever lasted the rest of that day and then didn't come back. I was stunned! I thought after Carly and I had both had a fever for several days that you would too. Nope...once again your amazing little body fought off whatever was making it sick super fast. How do you do that?? You'd think the immuno-suppressed cancer kid would get sick first and have it the longest...not my WeeMee! Your amazing.

About the same time you got "it", so did dad. He had it for a few days too. So far everyone in our family except Alyssa has had it. Hope were done with it...

Ive been a little worried about you the last several days though. You have had yucky horrible diarrhea since before you got sick last week, and lately you complain a lot of weak legs. You don't wanna walk anywhere up or down stairs. Even from your room to the couch is asking a lot. You also fell asleep today at 10:30 in the morning and I woke you at noon so we could take lunch to dad. You have dark circles under your eyes and have lost a little weight. All this has me nervous. I'm glad you haven't had a fever, but at the same time, if you did, I would take you in and you'd have to get all checked out. Its times like these I miss our weekly visits to the clinic. As nice as it is to go every four weeks...it can be nerve racking that we go so long in between check ups. You temps have stayed in the 99's so far so we'll just wait and see what happens. I hate waiting and seeing...

In other news...Carly is getting baptized on Saturday! We are all excited. Its such a special experience to see your little ones all dressed in white and looking beautiful and glowing as you get baptized and then receive the Holy Ghost. Thank heaven for the gift of the Comforter! I could never have made it through this last year without it. We are so blessed to know our Heavenly Fathers plan for us, and be able to take an active role in our own salvation. We get to choose for ourselves who we want to be, and I am so pleased with the choices all my kids are making. I have been so blessed with wonderful kids!

In related news...Daddy was just called to be the Bishop of our ward! What a huge change for our family to have him away so much, but what a huge blessing to have the opportunity to give back to the ward who has loved and supported us so much this past year. We have been so blessed to live among so many wonderful people. I feel like I will be forever in their debt, and this might be an opportunity to give back...just a little. It'll be interesting to see how our life unfolds over the next 5 years or so while daddy serves. I hope you always cherish the opportunity to have the priesthood in your home...I'm so grateful for your daddy, and I know you are too!

Clinic in February was on the 17th (during the week Carly was sick). You had a back poke scheduled this round so you had to go hungry so you could have an empty stomach for anesthesia. I had to stay home with sick kids so daddy took you. He said you did awesome! You got a back poke...which is when they take spinal fluid out of your spine and replace it with the exact same amount of chemo. The reason they do this is because the chemo you take orally, and through IV will not penetrate the blood-brain barrier so they give you chemo in your spinal fluid every 3 months to make sure your brain stays free of cancer. He said you woke up from anesthesia really well, and that they had already given you your Vincristine so you were able to go right home. You had the usual side effects... Leg pain (severe enough you ask for "the pink stuff"(oxycodone)...you NEVER ask for medicine), fatigue, belly aches, pale skin and dark circles under your eyes. The leg pain is the worst. You cry out in pain and whimper when you walk. You are so brave and tough and you always try to keep going no matter how crappy you feel. How'd you get so tough?

Clinic has tried really hard to make flu season safe for all. They don't allow any siblings in, and they have really done a great job of getting us in and out. They are so amazing!

I'm so glad we are dealing with this cancer now, and not 30 years ago! 30 years ago a child with your same diagnosis would not have made it. I'm so grateful to all those kids who came before us, and paved the way, through research and study to get us to where we are today! What an amazing leap to go from almost no chance of survival to 95% !

On a side note...TO THE READERS OF McKALLS BLOG: Coming up on July 9th there is a very special cancer walk to benefit CureSearch. CureSearch funds the Children's Oncology Group(COG), and 95% of all the money raised goes directly to fund Children's Cancer Research. McKall is participating in the COG research study at Primary Children's Hospital right now, and the study is already benefiting cancer kids across the country! We really want to give back so I will be organizing a team and trying to raise funds for the group. Once I get my website up I will share more details. I am SO excited about this!! Its groups like this that have raised childhood cancer survival rates to what they are now...and wouldn't it be great to help support an actual CURE!

In other news...your hair! Holy cow...I know I say this every month, but its growing like crazy! Ill let the pictures do the talking.

Not a big fan of the flash...Hair pictures for March!

Side shot...

And from the rear...its a little crazy from laying on the couch.
Cant believe its long enough to get messy!

A little note about a little hat: I ordered an owl hat like this one (see below) back in November and it never came. Long story short the person I ordered it from took my money and kept the hat. Our sweet friend Angie took it upon herself to find one like it and order it for us. She gave it to you a few weeks ago and you don't leave home without it! I love it so much and so do you. It has been a neat conversation piece. We cant go anywhere without someone stopping us to ask about it. In fact you wore it to clinic last time and all the nurses were making a big fuss. Then when I had to take you back for your fever one of the nurses (Tiffany) came back and showed us an owl hat she was making like it! It has been fun to listen to you tell people about it and see the smile it puts on yours and others faces. I know its "just a hat", but its a special hat...

LOVE this hat...Thanks Angie!!

Much better already...

2011-02-07T16:11:00.000-08:00

This last couple weeks since your last treatment has been much better than already. You are sleeping through the night (hallelujah!), and you are a lot less emotional this time around. Your appetite is increased, but not excessively so its doable...all in all its been a calm couple weeks! We love calm.

The other day you said, "Mom, come here...
Im having a round-up!" (your animals were lined
up all "around" you!)

Your hair is insane! I just cant get over how much its growing. We get LOTS of comments from people in the ward on how quickly it grows! They are amazed at how much longer it is every time they see you in church...so am I. Especially when I compare this months pics to the last 2 months...its huge. Your hair is longer than daddy's and Tuckers. (you are very proud of that fact) You told daddy he needs to grow his hair out if he wants to be twinners with you still....we'll see if he does.

Look at those georgous locks! You cant tell in
this picture, but your curls are coming back too!

Side shot...you've got your daddy's calic's

Speaking of calic's...Look at all that hair!

Look how pretty you are with such short hair...
not many people can pull off this look.

You were so excited when Thursday came ("finally", you said) and you got to head off to tumbling. You even begged me to bring the camera so we could get some pics of you and Coach Whitney! You had a blast, as usual, and I was so excited to see how much progress you have made in just 1 month!! You were doing back bends again, you had the strength to pull your legs up on the bar, you balanced on the beam without help, and did all your tramp tricks without falling once!! Woo Hoo! Go Wee-Mee! Im continually amazed with how resilient you are...you never let a little thing like cancer stand in your way! Amazing!

You begged for me to bring the camera, then
you were super shy when it was time for the picture!?

Where to start...

2011-01-26T08:22:00.000-08:00

Its been almost 3 weeks since I posted last and Im not sure where to start...

Last month was rough. More on me than on you. You were sleeping terribly up until a week and a half ago and so was your brother. I was up almost hourly...every 2 hours if I was lucky. I was so tired and it made it hard to get through the day. Its emotionally and physically exhausting to watch you struggle and not know how to help, and then add on that I am exhausted too, and it made for some very difficult nights. I would get down on my knees and pray that I would know how to help you relax and that Id be able to make it through the night and then the next day....thank heaven for prayer. I always felt the peace and comfort that "this too shall pass." A peace that can only come through the spirit.

I believe that everything happens for a reason, and that the trials we face come to help us learn things we could not learn any other way. Sometimes I think that I am the reason you got cancer. I know that there are a lot of things that I have learned through this experience about myself, and about my Savior, and about a lot of other things that I dont think I could have learned any other way. I am so grateful for the outpouring of blessings that I (and our whole family) have received because of this horrible disease. I just wish I could have been the one to deal with it. I would gladly have taken that burden from you. You have handled it with such grace and acceptance that I am amazed. You are such a special kid. I just hope you know how much you have blessed the lives of everyone around you. I love you Wee Mee.

Maintenance has been a lot different than I expected....I dont really know what I expected, but its different than I thought. You are doing well. I LOVE (and so do you) not having to go to clinic weekly. Its so nice, but its hard to believe you've had 3 treatments in Maintenance already! Only 23 to go! Taking meds at home has become part of our daily routine and seems normal. Last Thursday you took 10 pills. Yikes. 4 were a steroid, 1 was 6mp (a chemo), and 5 were Methotrexate (another chemo). You did awesome.

The big round one is 6mp, the 5 yellow oval ones are
Methotrexate, and the 4 small round ones are steroids.

You had clinic last Thursday too. They had us in and out really quick and I am so grateful to that hospital! They try so hard to make you as comfortable as possible and you LOVE that they can access you and draw blood, and do chemo WITHOUT a window sticker. You hate those things. We are so blessed to have them be so close, and its comforting to know I can call anytime with questions or concerns and they are always there to help.

YAY! No window sticker today!

You wanted a pic by the horse cause he had antlers on,
and a clown wig. This horse kind of freaks me out.

So glad to be home!

The visit was pretty routine just a couple of things to report:

1. They upped your Septra dose (a preventative antibiotic you take every Mon and Tues throughout treatment) from 5mL to 7mL, because you are growing.

2. Your ANC count was 2300. They like it to be closer to 1000 so the doc said it could be up because your body is fighting a virus (you have a bit of a cold), or it could be up because your body is adjusting to the chemo and its time to up your dose. Doc Fluchel said if they are up still at your next clinic appointment then they will rule out the virus and up your chemo.

3. Dad and I were worried about your clinic visit in May because you are scheduled for a back poke and chemo just 2 days before our DisneyWorld trip. We were concerned because clinic chemo, and backpokes are especially hard on your legs, and we didnt want you to feel miserable on our trip. I asked Doc Fluchel if we could do it when we got back from our trip and he said, "no problem!" Woo Hoo! He said Maintenance is a lot more flexible and he felt totally comfortable with that. We will just have to take your normal oral chemos you take at home with us, and keep up on those. Im so relieved. This will be a much needed trip for our family. We will actually be gone on your 1 year diagnosis anniversary. What a place to celebrate kicking cancers butt!

On a happier note, you and your sisters have restarted your extra curricular activities. Alyssa is taking Power Tumbling, Carly is in dance, you are taking tumbling again, and Tucker is just working on being awesome (a job he does well). You are all excited to be back doing things you love and I am happy to be the chaffeur again.

You are taking tumbling at Head Over Heels and you LOVE it. Sometimes you call it dance, sometimes tumbling, and sometimes "gin"nastics. The funny thing is whatever I call it is wrong.... I think you just like to correct me. You've been twice now, and ask me daily if today is tumbling day.

The first time you went was kind of hard to watch. I had to fight back tears a bit because of how weak you were. It was a very obvious reminder of how much all these chemo treatments have taken from you. The biggest difference is your little legs. The steroid causes the muscles in your legs and bummy to atrophy and disappear, and the Vincristine (the chemo you get every 4 weeks at clinic) causes muscles weakness all over, but particularly your legs. I can tell just by looking at you that you have lost a lot of muscle over the last 8 months (has it only been 8 months...feels like longer). Your cute bubble butt is gone, and we cant hardly get your pants to stay up, and your legs are a lot more scrawny. I knew all that, but to physically see all the strength you lost was heartbreaking. You used to be able to do back bends no problem, not anymore. You used to do all kinds of tricks on the tramp, now you have a hard time keeping your legs underneath you. The hardest one to watch was when everyone was hopping on one foot. You tried so hard, but just couldnt do it more than once. You were so exhausted but you were still trying so hard. I was so proud of you. It made me want to cry. I love your teacher, Coach Whitney. She is really good with you. She pushes you just enough. She always encourages you to try and then will help you if you struggle. When you were all supposed to hop on one foot to the water fountain you tried and kept falling, so she just held your hand and helped you keep your balance while you hopped. You still struggled, but I was so proud of you for not quitting, and glad your teacher encouraged you to stick with it too. I think the class is going to do wonders for your strength and for your self esteem. It will be good for you to see how much you can improve with hard work.

Sissies were off from school last Mon and Tues. so we wanted to have a fun day. You and your sisters all wanted to go to Temple Square. Im so glad I have such sweet kids. You wanted to be outside because the sun was out that day and the temps were a scorching 40 something. So we bundled up and drove down. On the way I went up past the Capital Building because you guys love to look at it. You were all saying (with heavy sighs) how you wished we could go in. I told you we could go in it whenever we wanted...never had I seen such excited kids! (what the?) So we stopped and parked amid giggles and squeels of excitement. You guys were amazed and kept saying how if you you lived in a place like the capital you would play Cinderella as you scrubbed the floors. What an imagination you all have. You learned a little about how the government works as we took pics in some of the rooms...it was fun to see you so excited about something so simple.

The House of Representatives room.

I wouldnt want to scrub this place ever...even if I was
pretending to be Cinderella. I had fun embarrassing you
and your sisters by singing the song Cinderella sings
while she scrubs the floors...:)

Next we headed to Temple Square where we spent quite a while enjoying the South Visitors Center. You guys loved all the touch screen computers. (I kept thinking how many germs must be on those screens and whipped out the "hanitizer") They have a really cool model of the temple that showed what the inside looks like. You and your sisters were funny to listen to as you speculated on how they made it, and how fun it would be to be tiny and walk around in it. I told you its a lot cooler to go in the "real" temple life size, and even MORE beautiful.

I LOVE these kids! What would I do without you all??

These trees were so cool looking...all snarly.

Then we headed over to the North Visitors Center and went to see the Christus. We were snapping some pics in front of the statue when a couple of sister missionaries stopped and took a picture of all of us together. The missionaries were cute and you and your sisters were mesmerised by their accents. (one was from Australia, and the other was from Pakistan) They asked us if we wanted to go back and see a movie about eternal families...we (of course) said yes! The movie was awesome. Very moving. We are so blessed to be members of this gospel! I dont think I, or you, could have made it through our trials this last year without it. I am so grateful to know we are an eternal family. I was also grateful for those 2 sister missionaries who were inspired to share that movie with us and I am grateful that all my girls got a chance to hear them bare their testimony of the truthfulness of the gospel. Its good for you to hear it from someone other than me.

So glad we live so close to this beautiful place,
and can visit as often as we like! There wasnt hardly anyone
there so we had the place mostly to ourselves.

Overall you are doing really well. You are happy and busy and seem more like yourself each day. You are still very easily tired and need a nap everyday, but Id be tired too if I was taking chemo everyday! We have been truly blessed that you have done so well. Things could have been a lot worse. As I meet more and more families with cancer kids I am reminded of how well your amazing little body has dealt with the treatment of this devastating disease, and how quickly you have bounced back.

"But Im not tired mommy..." 2 seconds later you look like this.

You just finished your steroid series for the month and have a definite increase in appetite. You have been a little extra emotional too, but its hard to know if its just because you are hungry and tired. I have noticed that you have been extra sweet lately too. You are always telling me how much you love me, and giving me hugs and saying your please and thank you's. You say the cutest things. I wish you could stay this age forever.

Dress ups and a tea party with Ry.

Hair hair everywhere...and other random thoughts

2011-01-07T22:02:00.000-08:00

Holy cow, your hair is coming in fast! I decided I would copy a fellow cancer moms idea (thanks Amanda!) and take a picture of you each month so we can see the progress in your rapidly returning hair.
Drum roll please...

Love that smile..LOVE that kid!

I worried your gorgeous eyelashes would never be the same,
but they are back in full force, and beautiful as ever! People
pay good money for lashes like that!

Random thought #1:
I went to dinner with some of our cancer friends moms last Wed night. Part of a moms group called "Utah Moms of Cancer Fighting Cuties". It was so nice to visit with other people who have kids going through what you are. There are some farther along in treatment who can answer a lot of my questions about what to expect, and there are some who are behind us in treatment and its nice to be able to lean on each other and lend support. When the Olive Garden (where we went to dinner) found out we were all there as mothers of cancer kids they gave us free appetizers and said the whole meal was free!! They even said dessert was mandatory! I cant believe how generous people are...so giving. I feel so blessed to live in such an amazing place, surrounded by amazing people.

Random thought #2:
The side effects of your meds this month have been so different and I really don't like it. I thought that after the 1st round of Maintenance chemo Id be able to know what to expect each round. Wrong. You are far more tired this round, and you are STILL having the night terrors, and insomnia. You still want to play, but I can see that you are easily exhausted. Plus you are VERY tender hearted...you get your feelings hurt over everything. Dad had to literally peel you off my leg the other night when I went to dinner. You were so upset I was leaving...you said you just wanted to be with your momma . Then the next day you were crying and upset when dad had to run an errand cause you "missed him so bad."

Random thought #3:
You have some pretty awesome sisters, and a pretty sweet brother too. Your sisters are a great distraction when you're not feeling too well, and your brother can always make you smile. I'm grateful for all my sweet kids. You all add so much to our family. I cant imagine our family without any of you. Alyssa is great to do crafts with, and paint your nails or play barbies. Carly loves to read to you and play school and Tucker lights up whenever you walk into the room. They love their Wee Mee too, and were ALL glad you're doing so well!

Cutest kids ever!

Steroids...Ugh

2011-01-03T13:40:00.000-08:00

This round of Maintenance has been different. Hmmm...I don't know what to think.

You take ALL your meds quick and easy now. There used to be some that were harder to get you to take and some that were easier, but now you take them all without a hitch. I cant believe it. I remember back to our first few months of treatment. It used to take Dad and I an hour or more just to get you to take one of your medicines...literally. We tried everything. You fought it an fought it. I even asked the docs and Rachelle for some advice, but all their ideas Id already tried. They said one day it would all be "old hat" and you'd have no problem taking meds. At the time I thought that day would never come. Now it has and I'm grateful. Although I feel terrible that swallowing up to 8 pills in a day has become "old hat." That reality is one I would never have wished for you.

Steroids were taken with no problems this month too. Which is huge. They are by far the yuckiest ones you have to take. The docs said they had a class that let them all taste all the meds their patients have to take and steroids were one of the worst. VERY bitter. The side effects are different this time. Last time your appetite kicked in the day after you quit taking it. This time I haven't noticed too big a difference in your appetite, however your emotions are far more up and down, and the dreaded night terrors have returned. Ugh. I feel so terrible for you. You are literally yelling (and sometimes screaming) in your sleep. The only problem is you never fully wake up. You will have a full conversation with me...very upset and inconsolable...and not remember a word of it the next day. Your waking me up every couple hours at least, and to make matters worse, Tucker has started waking up every two hours too! I am getting NO SLEEP. I feel like a walking zombie. I'm forgetful, and some say a tiny little bit ornery. I don't know about that :)...I actually wake up MORE tired than I went to bed. Last night you were up more than usual and complaining your eyes hurt. Turns out you have pink eye in BOTH eyes. Your eyes were crusted shut and you woke up screaming you couldn't see. I tried to explain what was going on. I told you you had germs in your eyes that made them sick like a cold. That's why you had so many boogies in your eyes. You burst into tears cause you thought you had to go to the hospital. Oops. I quickly erased those fears and you calmed right down. Poor kid. I wish there was a way I could eliminate your fear of getting sick, and going to the hospital.

You have been very loving lately though. Very free with your hugs, and snuggles, and kisses. Which everyone on the receiving end of one of those special gifts LOVES! (Especially Grandpa Shepherd) You even gave big hugs to family you hadn't seen in a long time at some of our holiday parties. A rare treat. Your kind of stingy with those.

I got to substitute your primary class yesterday. It was SO FUN. There were 13 little 4 year olds in the class and you were all so good. I miss serving in the primary. You were so excited I was your "teacher", you were being a little overly helpful. It felt so normal...I love normal these days.

I am hopeful that this coming week brings normal back, and maybe even brings a little boring with it. I could use some boring too. And some sleep...

Clinic and Christmas

2010-12-25T14:57:00.000-08:00

We got a surprise at clinic. Due to flu season there are absolutely NO siblings aloud in clinic at all. I asked if that applied to nursing babies, and the answer was yes. So Tucker got baby sat in the playroom on the third floor. I was a little nervous about leaving him with total strangers, but I had no other choice. Luckily we were in and out in no time, and the cute volunteers said he was perfect. What an amazing facility that hospital is. I mean, where else can you get chemo AND a free babysitter all in one day!

While I ran Tucker down to the playroom you stayed and did a craft with Pat. It was a gingerbread man "ordamen". Soooo cute. When we got called back for height and weight stuff Pam gave you a really fun surprise...a HUGE stocking full of fun stuff just for you!! Apparently an engineering company puts them together and donates them to the clinic every year. Once again our family is blessed by the generosity of others! It had more than enough stuff to keep you occupied while I chatted with the doc.

You're sick of me making you pose for pics!

You were super excited because they had your chemo ready so they accessed you real quick, drew blood, and gave you chemo...all without a window sticker. Your least favorite part is the sticker so you were beyond thrilled. After that they said we could go!

I had been worried that they would up your meds because when you had a fever last weekend your counts were 4800. Usually your counts drop when you are sick... BUT, your counts were down to 1200, which is right where they want them to be. In fact all your counts looked awesome. "Perfect" was the word the nurse used.

I asked her why they were so high over the weekend and she said that when your on the more intense chemo your body is not able to make the antibodies it needs to fight off infection so your counts drop. But since you are on less intense chemo your body is actually making its own antibodies and fighting off the germys on its own! How amazingly resilient your little body is. Only one Maintenance treatment and your body is already bouncing back! I just cant believe how strong you are.

We even ran into some of our fellow cancer friends! Chase, who is in DI and doing awesome. And Erin who has AML and just won her battle with cancer. Yay for Erin! Its so nice to have friends going through the same thing. Its encouraging to see others do so well.

We did have one incident at the hospital. Actually the pharmacy. I had your prescription filled before we came home, and when I got home and pulled your meds out of the bag I found that your 6mp bottle had a sticker on the top that said "we owe you 25." Turns out that they gave you the last of the meds they had (5 pills)! Which would have been fine if they had told me! I was really frustrated because when I called the tech was very rude and unapologetic. It stinks because now we have to head back to the hospital on Monday to get the rest of the meds!! Oh well. It could be worse...at least we don't live out of state!

The next night was Christmas Eve. We had so much fun! We went to Grammy Shepherds and had a ham dinner (your latest fave.), and exchanged presents. Alyssa and Ashleigh took the puppy outside for a potty break and came rushing back in claiming they had just seen Santa fly across the sky in his sleigh! You and Katie-bug about lost it. You were squealing and screaming and laughing with delight as you ran through the house telling everyone that Santa was on his way! It was so fun to see you so excited about something! I love Christmas with my sweet kiddos! I love to watch the magic of the season through your eyes, and I love to remember my Savior and his life.

One of our favorite traditions is re-enacting the nativity. This year you were an angel, and you did an awesome job. I was fighting back tears as you came out all dressed in white, and bald. I cant believe how beautiful you are. You seemed to grasp the reverence of what you were doing and had a sweet countenance about you. I'm so grateful for your strong and sweet spirit. You have truly been an inspiration to me this past year.

I am so blessed to have 4 such amazing kids. Each of you add something different, but very important to our family. You all have different talents and strengths and weaknesses. All of which add so much to our family. I'm just so grateful this Christmas for the gift of family. An eternal gift that I couldn't live without.

Christmas is today, and I am so grateful for my Savior! I am so grateful for the knowledge that he hears and answers prayers. That he knows me, and you, and that he has been our constant companion this past year. While I would never wish cancer on anyone, I am grateful that your cancer has brought me closer to our Savior. And that I have gained a testimony that he truly does "make weak things strong." I could never have survived this past year without His help. Merry Christmas Wee Mee. 2010 is nearly over and 2011 marks a new beginning!

Santa is the coolest!

Cutest kids ever!

Make A Wish...

2010-12-22T15:51:00.000-08:00

I really don't think there is any way I could put into words how moving, and amazing Monday nights Star Raising Party was. It was overwhelming.

You were feeling so much better, and were so excited. I think you surprised your wish granters (Tom and Leslie) because the first time they met you they could hardly get two words from you!

When we got there the first thing we did was give all the fam a tour of the "Wishing Tower Place," as you call it, and you even showed everyone the inside of the Wishing Tower. You feel so special to have a key to that special room. You had been asking me all day if I had your wish key...you were so worried we'd forget it. You kept saying, "Only wish kids have a key, mom. And if I forget it, how will everyone get in?!" Makes sense.

There is so much to share that I'll explain mostly through pictures...

Welcome to a wishing place McKall!

It says, "When I wished upon a shooting star I wished for..."
It has pictures of a bunch of wish kids and their wishes. You are
pointing to your picture and wish! I cant believe how many
people we knew on that wall!

Close up of you on the wall of wishes!

After we looked around downstairs we got to take everyone
upstairs to the wishing tower! This is you using your wish key
to let everyone in. Its hard to tell, but there is light glowing
through the slits in the door. The kids were WAY excited!

You have to walk across this little bridge to get into
the wishing tower. Then in the background you can see
the waterfall and glowing lights. The cone shaped
thing is where you put your wish.

You got to show everyone how you put your wish in the
top of that cone, then put it on the base. All the
lights went crazy and the music played. It was pretty
magical for all involved.

Then it was back downstairs where they had all the tables
decorated with your favorite color!

They got some color pages out for all the kids while me and dad
sat down with you to decided which of three playhouses you
wanted them to build in the spring!

Decisions decisions...everyone knew which one "they" would pick.
I don't think you really understood that one of those playhouses is
actually going to be built for you in the spring. I think to you they
were just a bunch of pictures of houses.

This is the one you ended up picking! I was totally stunned
at how big they are. They are 8'x12' and have 2 stories! Its
got a wrap around porch and everything! Amazing!

After that Tom asked you to come up front for a minute...

Your eyes were huge and you were so excited! A
Barbie house (with an elevator) is what you've been
wanting for ages. I couldn't believe they had it all put
together and everything!

You just stood and stared for a second then you
said very softly, "can I touch it?" It was sooo cute.

We LOVE our Wish Granters: Leslie and Tom! What amazing
people to give so freely of their time to bring hope and
happiness to our WeeMee! I hope you will always remember
these wonderful people and "pay it forward" one day. I will
be forever grateful to the whole Make A Wish foundation!

After the presentation of the Barbie house was some
yummy refreshments. You were so wrapped up with your
Barbie house you didn't have any. Later, on the way home, you
said, "hey, I forgot to eat my princess cake!" Silly kid.

McKall's Star. A local artist in Salt Lake makes these and
donates them to Make A Wish. Amazingly talented
people everywhere! Thank You!

After refreshments you got to hook your star on the string...

...and hoist it up...

...to hang with all the other wish kids stars.. It was
so amazing. I am so grateful to so many for all they
have done for you and for our family.

Here it is...kind of in the back center.

I forgot to mention the scrap book! The scrapbook is a place
where all the family who came can write special messages
to you. They keep it in the Wishing Place so you can always come
back and look at it. They also write where you star is located on
the same page so you can find it on the ceiling when you come
back to visit. Your page was filled with encouraging messages
from everyone...so much so that I'm not sure they are going to
have room for the picture! Oh well.

Obviously the night was a huge success. So much so that we didn't want it to end so we all went out to Chuck E Cheeses afterward for dinner and visiting! It was so much fun! It was such an amazing night.

Being around such amazing people, and so often lately, being on the receiving end of so much service really makes me want to give back. I cant tell you how many times we've heard the doorbell ring and answered the door only to find an anonymous donation to help with medical expenses, or a friendly card and treats to cheer us up. If I had one wish for you, it would be that you ALWAYS remember the amazing people who have given so much to our family, and find a way to always give back to others. You are such an amazing inspiration to everyone around you already...I know you will.

PS- Your hair is growing like crazy!!!

Its long enough now that it'll actually get messed up by a head band
or hat. If we want to change your hat or band we have to wet
your hair down to get it to lay back down! I cant believe it.

An unfortunate turn of events...

2010-12-19T10:36:00.000-08:00

So, about an hour after I finished your last post, we got a call from grammy...

You had been having a long awaited spend-over...just you and your cousing Katie. You guys dressed up in princess dresses and had a tea party with grammy. Grammy said you were having so much fun together (and Im sure LOVING having 100% of grammys attention helped)! Then you started to say you were tired and wanted pj's and a movie. All was well.

Then you woke up about midnight and called for grammy. She came in to check on you and found that you felt very warm, and had a barky croupy cough. Awesome.

Thats when we got the call...daddy ran over there with the thermometer and your temp was 102! So off to the "hostible" you went. (after a quick stop at home for some EMLA). You left our house just before 1am and didnt make it home till just after 6am! Dad said you didnt hardly sleep at all!!

Poor dad had to wake up after only an hour of sleep and go do a couple of work things...

Poor you...I felt so bad. You were heart broken because you had been looking forward to the day you could have a sleep over with grammy. You've missed so many since you were diagnosed!

When dad brought you home for the EMLA , and you saw me for the first time, you broke down in heart broken tears....you said, "I wish I didnt have cancer mom...thats what I wish. I wish I didnt have cancer!" It about ripped my heart out of my chest. I feel so terrible you have to endure so much! It just doesnt seem fair. (heavy sigh)

On the bright side...your counts were a whopping 4800!! The highest they've been since your diagnosis (not counting steroids). Because of that, you didnt have to have a spend over at the hospital, and were able to come home.

Today you woke up feeling much better. They gave you a steroid to help with the croupy cough, and now it seems like you just have a normal cold. The whole family has it, so we decided to skip church and rest up.

I really hope were ALL feeling better by tomorrow...dont wanna feel crappy for the STAR RAISING PARTY!! So excited.

PS-Im amazed at your ability to feel so concerned about how everyone else feels about you being sick. You always try to cheer me or dad or grammy (or whoever) up about it. You've told me several times, while leaving to the hospital, "its ok mom, I love you." I dont know how you do it...I really try hard to hide any feelings of concern. I dont want to add to your worries. You must be able to sense it, or see a look of concern on my face. Your amazing.

PPS-Im a little worried they are going to decide to up your chemo dose because your counts were so high. I was told they like to try to keep your counts around 1000 all through Maintenance. Guess we'll see. I really hope they dont...

Finding a new normal...

2010-12-17T20:45:00.000-08:00

So far we are really loving Maintenance! If you have to be on chemo treatments...this is definitely the way to go. I finally feel like I'm getting my Wee-Mee back. Your steroid hunger has disappeared, which I have mixed feelings about.... it took a lot longer than I thought. Your extreme moods only lasted about a week, but the hunger lingered for two. I was beginning to worry you were going to be obsessed with ham for the full 2 years of Maintenance!! Now your back to not eating hardly at all, and I'm wishing you'd ask for some ham. Oh well. I guess I'm going to have to get used to the ups and downs. I think its going to be our new normal.

You've been asking me almost everyday if you have a "docker poinment" today. I am SO GLAD I get to say "no, not for 4 (3,2,1) weeks!" Since you have no real concept of time you don't really get how long that is...but the relief on your face says it all. I'm so happy for you!! The fact that you can relax a little is huge for me, and you. I cant express in words how nice it is... I'm just so grateful you've made it this far and done so well. I worried that you'd have more side effects to your meds, but so far so good. Your next appt is this Thursday. 2 days before Christmas. No back poke, so all should go well.

We've been doing some fun stuff lately...

We went to our ward Christmas party. I was SO surprised
how outgoing you were. You've been a little overly shy
at these kinds of things since you were diagnosed.

You even participated in the nativity...you were an angel. My camera
wasn't taking good pictures in this lighting. You are the blurry bald
one in pink in the front row center.

We finally got our tree up. Me and dad (mostly dad :)) aren't so
good at lights. I laughed so hard at our tree...dad says its the
best one we've ever had! Thank you Walmart...only 20 bucks!

What a cutie...big sisters old soccer uniforms are your
favorite pj's! (you can really notice the lack of skills on the
lights in this pic. Hilarious)

You've had the energy to play with Ry quite a bit. This is you and
her in a fort you made all by yourself! It was filled with
pillows and blankets and snacks, because building
a fort is exhausting!

They say a picture's worth a thousand words...and this one says it all!
You called me from your room and said "uhhhh mooommm...my panties!"
When I came in you were just sitting on your kitchen, so I asked what
you were talking about your panties for. You said "I'm stuck..."
It took me a minute to figure it out, but once I did I laughed so hard
I cried...then I ran and got the camera!

A close-up of the panty incident! So funny!!

This is a pic of you on the bus to the Polar Express. Dad said you sat
next to this boy who was bald and had a mask on. (you can kind of
see him in the back) He said you sat by him all on your own and said,
"hi, do you have cancer?" The boy said yes. You said, "leukemia like
me?" He said "no, sarcoma."You said,"that's what (uncle)Josh has!"
You chit-chatted for awhile. I thought it was sweet of you to go out
of your way to talk to him. I think its so interesting how you have
an instant connection with fellow cancer kids. Dad said you were
very sweet.

Thank you KBER 101 and Make a Wish for taking so many "wish families"
to ride the Polar Express! I think I was more excited than you or your
sisters! I was devastated when Tucker woke up the morning of
with a fever...no train ride for me! Dad said it was really neat...you got to
have lunch, ride the train to Santa's Lodge, meet Santa, and even
got a gift from him! What a fun day!

Your ticket...

Carly and Lyssa had a ticket too...

You better watch out...

You better not cry...

You better not pout, Im telling you why...

Santa Claus is coming to town!

I'm so excited for Christmas! I love watching the magic of this time of year in you and your sisters eyes. It so fun to hear the squeals of delight as you anticipate Christmas morning, and as you deliver gifts to neighbors and friends. I LOVE this time of year. So much to look forward to and be thankful for! Speaking of which...

On Monday December 20th, the 7 month anniversary of your diagnosis, Make A Wish is having your Star Raising Party! We are so excited for this special night. You will get to write your name on your own star and watch it raised to the ceiling with all the other wish-kids stars. What a neat, symbolic day. I hope you are always grateful for the wonderful people who put together this program. I am so excited to be a part of this special day! They will do the star raising, present you with a Barbie house (with elevator), and let you pick which playhouse you want them to build you in the spring. You also get to invite your friends and family to come share the moment with you. It should be so fun! So looking forward to it. Loving the new normal!

Free for you, PRICELESS for them!

2010-12-07T22:28:00.000-08:00

This Christmas, here's two relatively simple, FREE gifts you can give your fellow man:

1. Get registered in the bone marrow donor registry: http://www.marrow.org/JOIN/. There are many people who need a life-saving bone marrow transplant, but who don't have a match. Last month we heard about this sad story - an 11 year old girl with AML (leukemia), who passed away. She needed a bone marrow transplant and a perfect match couldn't be found. YOU could be someones match. It takes about five minutes to get signed up. Get registered and give someone hope! Our friend Rachel was able to find a donor, can you imagine if she was saved because of YOUR marrow? What an amazing gift for everyone involved!

2. Donate blood at your local Red Cross you can also go HERE if you're not sure where that is. You can donate blood or platelets at American Red Cross. A single platelet donation can provide enough platelets for a full therapeutic dose for a patient in need. In fact, some platelet donations yield enough platelets for two or three therapeutic doses. By contrast, it takes about five whole blood donations to produce a single therapeutic dose. Many patients who need platelets are undergoing chemotherapy or organ transplant and have weakened immune systems. A platelet dose from a single donor reduces the patient’s exposure to multiple donors and is therefore preferred by many physicians. During a platelet donation, a small portion of your blood (less than one pint at a time), is drawn from your arm and passed through a sophisticated cell-separating machine. The machine collects the platelets and safely returns the remaining blood components, along with some saline, back to you. After the donation you can resume your normal activities, avoiding heavy lifting or strenuous exercise that day.

According to the American Red Cross: every two seconds, someone in the US needs blood. Before McKall was diagnosed, I never could believe that number. I had no idea. But after going on this cancer journey with McKall and sitting in clinic watching blood transfusion after blood transfusion going on around us, that number is much more real to me now. McKall had 3 just in her 1st week of treatment. We have a friend Elena who has had multiple transfusions in just one week - and occasionally, her transfusion has been delayed because the blood bank didn't have the type of blood she needed. Or there's our cancer friend, Skyler, who has multiple platelet transfusions every day. And there's millions of other cases where people need blood. It is life-saving. And it can be really scary watching your sick child and being told that there isn't the blood they need available.

Some Facts About Blood Supply Needs and Blood Donation -from the American Red Cross
•One donation can save the lives of up to three people.
•The demand for blood transfusions is growing faster than donations.
•Shortages of all blood types usually occur during the summer and winter holidays.
•Less than 38% of the US population is eligible to donate blood. (So if you can, you can see that you're sorely needed!)
•It is possible to donate specifically only platelets or plasma. This process is called apherisis.
•Donated platelets must be used within 5 days of collection - new donations are constantly needed.
•Healthy bone marrow makes a constant supply of red cells, plasma, and platelets. The body will replenish the elements given during a blood donation - some in a matter of hours, and others in a matter of weeks.
•The average adult has about 10 to 12 pints of blood in his body. Roughly 1 pint is given during a donation.
•The average red blood cell transfusion is approximately 3 pints.
•A healthy donor may donate red blood cells every 56 days.
•A healthy donor may donate platelets as few as 3 days apart, but a maximum of 24 times a year.

You must be at least 17 years old, weigh at least 110 pounds, and be in good general health to donate. (Eligibility requirements may vary in some states and donation centers.)

Please, if you possibly can, get out and donate this holiday season. It's one of the best gifts you can give.

This Christmas, GIVE LIFE!

This is gonna be a long one...

2010-12-03T15:19:00.000-08:00

Well, the last 2 weeks have been long. A bit of a rollercoaster of emotions for all.

You continued to feel great all the way up to your first Maintenance treatment. You were feeling good, but I could hardly get you to eat. I was actually looking forward to you taking the steroids, just so you would eat something!

You and Ry pretending your at the top of the "wishing tower"!
So excited to make a wish!

The night before your treatment there was a big blizzard! The roads were really bad so you and dad had to leave just after 6am to get there by 8am. I really wanted to go, but Tucker wasnt feeling well and so we didnt want to have to wake him up that early.

Still sleepy, but ready to go to clinic!

Dad said that they were running behind at clinic and that everything took a long time. You met with the docs and then headed down for your backpoke. Dad said you did an awesome job, and woke up really sweet. Then (because they didnt have your chemo ready) you had to go back up to clinic for your chemo. Which they STILL hadnt ordered so it took forever. You werent done until 1pm!! Dad said you seemed really tired and just wanted to come home. He said you didnt even want to stop and get any lunch...weird.

Or so we thought at first, by the time you got home you were obviously sick. You had the droopy "sick eyes" and when dad carried you in he said, "McKall needs her mommy, shes sick." As soon as I saw you I was worried. Dad sat you in my lap and I could feel the heat radiating off your little body! You complained your legs and back hurt, and that you had a headache. Dad took your temp and it was a whopping 104 degrees! We called the clinic and they said to bring you right down and they would get the anitbiotics and fluids ordered. You were so upset! Its so hard to be reassuring when your so scared and dont know what to expect. Plus the fact that your sick and feel so miserable makes you just want to be at home. I told you your counts were good so you wouldnt have to spend the night. That turned out to be a promise I couldnt keep.

They were quick in clinic, and got you all plugged in and hooked up to the meds asap. When doc Fluchel came in he said he thought there was a pretty good chance you could have a bacterial infection (SCARY) and that he wanted to watch you close while they gave you the antibiotics. He said the fact that the fever came on so fast made him think she could have had some bacteria sitting somewhere in your central line, and when they flushed your port it released all that bacteria into your system and caused you to get sick. I was worried it was from lack of hygeine on our part, but the doc said that it wasnt. That it was probably just some bacteria naturally found in your body and that there was nothing we could have done differently...thank heaven!

He said some common signs that it is bacterial is that your blood pressure drops and breathing becomes a little labored while getting the antibiotics. Sure enough, not 10 minutes later, all the things they were watching for started to happen. Your blood pressure dropped and they started measuring your breathing. It was kind of scary to watch you. You were asleep, luckily, and werent awake to see the worry in my eyes. They gave you more fluids to help with your blood pressure and then the doc came back in. He said he felt like you should probably spend the night. He said that if you had a good night, and they could get your fever down, and as long as you were feeling better and the blood cultures didnt grow anything that he would feel good about letting you go home the following morning. Thanksgiving morning. I said I hoped so...that would be definitely something to be thankful for.

They moved us up to a room in ICS and we got you settled watching a movie. You were exhausted so I headed home with Tucker to save grandma from the new puppy and your sisters. I HATE HATE HATE leaving you there. Even though dads there, I hate it. To make matters worse you were in tears...wanting me to stay with you. Its the pits. Long story short, you had a pretty good night. Your fever came back around 2am and then didnt come back after that. Your blood cultures came back negative, and your counts were good so they said we could bring you home.

Feeling much better the next day!

We got to grandmas just in time for Thanksgiving dinner! What a wonderful treat for Thanksgiving!! We had a really nice, laid back day with granparents Shepherd and grandparents Sanders. It was a delicious meal and we had a beautiful centerpiece made by YOU! It was a pumpkin turkey...so cute.

Cutest turkey pumpkin ever! Dont know if you can notice,
but his beak is over on the side by the butter dish! :)

We did some crafts...

...and read some books...

...and ate! (cant believe I forgot to take a pic of the food!)

We all went around the table and shared what we were thankful for. It is so overwhelming to think of all the amazing blessings weve received this year. Although its been a rough year watching you fight cancer, its been so amazing watching you (and your sisters) gain a testimony of the Priesthood, and feeling the comfort of the Spirit during countless blessings and prayers. We are so grateful for all the wonderful and amazing people who have supported our whole family during this time. Those that helped watch your sisters, those that helped with fundraising, the many many people who came out and donated blood to show support for you, and help others at the same time. Im most grateful for the testimony I have gained that the Savior really does make us strong enough to deal with the trials we are faced with. I cant believe how many times Ive felt like I couldnt stand one more sleepless night, only to wake up the next morning with only two hours of sleep, and feel totally rested. Or how, amazingly, every time you had to stay overnight in the hospital it happened to be at a time when daddy was home. Over a weekend or a holiday, or in between jobs. OR, the times I thought I was failing, and not being a good mommy to everyone, and not getting all that I needed to done...Id get a reassuring card in the mail from someone, or an email. I KNOW those are not just coincidences. I know those are blessings from our Heavenly Father and I am grateful. So grateful.

Unfortunately it hasnt been all smooth sailing. You have had a major adjustment period. I think that after not having chemo for 3+ weeks, and feeling so good, that taking chemo again has hit you like a ton of bricks. You came home from the hospital with HORRIBLE diarhea (poor kiddo) that lasted for several days. Which always happens when you get the IV antibiotics. Plus your legs were very weak and tired. You didnt want to do any stairs, and just walking from one end of the house to the other was exhausting. The docs told us to delay your oral chemo 2 days so you could recover from your fever a bit first, but when you started it just intensified the yuckiness you were already feeling. I think you got used to feeling crappy from the chemo so you learned how to pace yourself. Then, when you felt so good between DI and Maintenance you just went full speed all the time. So, when you were feeling crappy again, you had to re-learn all of that.

Your amazing though. Here it is, one week after your fever and treatment, and you are doing awesome. You finished the steroid and have an appetite again. I think I'll be glad that you have to take the steroid for 5 days a month because at least Ill know you'll eat well at least 1 week out of the month! Your new Maintenance chemo schedule is as follows: Everyday you have to take 6mp. In addition the first 5 days of the month you take steroids, and every Thursday (that you dont get a back poke) you take MTX. Then on the first day of each month you get Vincristine through your port at clinic, and every 3 months you get MTX in your spine(back poke). And as always, Septra on Mon and Tues. I say once a month, but its actually a 4 week cycle. So every 4 weeks we start the regimen over. So far your feeling good and taking your medicine well so Maintenance isnt looking too bad.

This last Tuesday was a very special day. We got to use your Make a Wish key at the Wishing Place in Salt Lake. We had no idea what you were going to wish for before you went, and we were so excited to find out. It was an amazing experience. Ill explain with pictures.

We got there a bit early, so we hung out in the car for a few minutes
so they could finish getting ready. You were nervous.

Just inside the entry way was this huge star..it says, "Welcome to
a Wishing Place McKall!" How cool is that!!

Each one of these glass stars represents a Wish kid, and their
wish that was granted. You'll have one too!

Once you decided on a wish, they wrote it down and had you
put it in this medal cylinder.

Then you took your wish to the top of the Wishing Tower. You
cant tell from this picture, but there is pink light shinning
out the small windows in the door, and under it.
(your favorite color)

Then we all went in...the room was changing color and
playing pretty music. We all got to share what our wish
for you was... (things like health, happiness, and
a trip to DisneyLand were all shared!)

Then they told you to follow the lights on the floor to deliver
your wish to the "Wish Wizard".

The lights lead you to this cone hanging in the wall behind
the water fall. There was a hole inside where you
put your wish in.

Then you follow the light back around and put your wish on
top of this....after you did all the lights went crazy and the
music started playing and they said "I think the Wish Wizard
got your wish, do you?" You were in total awe.

After you placed your wish we went back downstairs for some
snacks. They had pink all over the table. I forgot to mention they gave you
a purple teddy bear (you later named purplicious), and they gave Carly a
Make a Wish Barbie, and Alyssa a diary and a puzzle. So nice!

The snack was smore's...your favorite! You even got to bring some
of teh leftover chocolate home!

What an amazing experience it was. They had the lower level decorated with all kinds of pics of Wish Kids and their wishes. It was a very moving experience. Its so amazing how many brave little kids there are! I am so grateful to ALL the many people who give of their time and their resources to bring hope and happiness to these tough kids! THANK YOU MAKE A WISH!!!

Two small side notes I forgot to mention. One: we got a puppy. I think hes gonna be a really good dog...once hes potty trained! and Two: Your hair is growing back SO FAST. Here are some pics...

We named him Copper...hes a sweety.

Taken a week ago...look at all that fuzz!

The pic doesnt do it justice, but there is a ton more!!

Oops...one more thing I forgot to mention...what you wished for! You wanted a Barbie house with and elevator, and a playhouse. So, rather than make you choose, they are going to present you with a Barbie house (with and elevator) at your Star Raising party, and then have some people come build you a playhouse in our backyard in the spring!! So exciting! Later this month we will have a Star Raising party where ALL your friends and family can come and watch you write your name on a star that they will raise with all the other stars. I cant tell you how impressed we are with our wonderful wish granters: Tom and Leslie! Amazing!

Expect the Unexpected

2010-11-18T12:38:00.000-08:00

We have had a fun week this past week.

Friday we went and raked those leaves at the Stevens house. It was so much fun! It sounds like a lot of work, and it was, but everyone worked really well together and we got it done in just over an hour. There were only 3 adults, and then there was 11 kids and 2 babies! ALL the kids LOVED Bill and really worked hard to get it done. When we were done we had 22 big garbage bags full of leaves! Even you worked your little tail off. You helped rake off the trampoline, and helped bag all the piles we made. I was very impressed and you wore yourself right out. You came home and took a 2 hour nap!

Jill suggested a race to see who could bag their pile of leaves fastest. Ive
never seen kids spring into action and work so fast. It was hilarious!

Lots of helpers!

Everyone rushing to stack the bags of leaves and
count how many we filled. 22 bags equals a
lot of leaves!

Saturday was a fun day too! Megamind was a really cute show and you LOVED it. You've been quoting lines from it ever since! HopeKids actually opened another theatre because there were so many people on the wait list. Its pretty neat. They have a FREE box of popcorn and a drink for EVERY kid! Then we got to watch the movie. It was over right about lunch time so we thought we'd grab lunch. Turns out the Mayan Adventure restaurant was right next door so we went there. You were totally mesmerized by the water and "mountains" in the restaurant. The divers were pretty fun to watch too. Unfortunately all the excitement distracted you so well you didn't eat. Not that that's a surprising thing.

I swear I can watch you get thinner. Today I made you cinnamon rolls and you ate 4 bites and said you were full. I asked what you wanted for lunch and you said...crackers. Nice. It makes me nervous because you aren't even on any chemo. I hope when we start Maintenance. Its not worse.

At least you seem to be doing really well. You are literally running circles around us (see pic). I cant believe how much energy you have...its like its impossible for you to hold still. Its fun to watch you return to your old self.

Literally running circles around us!

Singing AND running!

Sunday was a great day for me. Our WHOLE family went to church together. Since your counts are better we thought we'd take you just to Sacrament Meeting. It was so nice. Its going to take some practice for you to get used to sitting still for church again. You were pretty antsy, but seemed happy to be there. We didn't feel comfortable taking you to Primary because too many people come to church sick. Lots of coughs and colds and sniffles in the primary room. Better safe than sorry. It was healing to be there together. I cant believe how good it felt. Like someday everything in life will be normal again. Its good to enjoy the little things...they bring the simplest form of happiness.
We did a little Christmas shopping the first part of the week, and picked out some fun crafts to do on Thanksgiving. I'm really looking forward to Thanksgiving...we have SO much to be thankful for this year.

Speaking of things to be thankful for...your Make a Wish invitation came this week! Boy do they know how to make something special from the get-go. It was a round castle box with an invitation and a key inside. The Invite said:

"It is our deepest honor to invite you

and your family to come visit

a Wishing Place for the

special occasion of making your wish.

Please bring this key with you when

you come, for it alone will open the

Wishing Room at the top

of the Wishing Tower.

We eagerly await your presence."

How cool is that, right? You were so excited to open the package and see what was inside. We cant wait to go. Were just waiting for a call from your wish granters to set up an appointment.

Make a Wish box! Oooo...wonder whats inside!

A castle? Wonder whats inside that!

A key to open the Wishing Room in the Wishing Tower!
Awesome.What else?

An invite to the Wishing Place! Now if only you knew
what to wish for!

The only thing I'm not sure about is WHAT your going to wish for. I read somewhere that about 75% of people pick Disney World as their wish. But, since were going anyway in May, that's not what you're gonna do. So, we talk a lot about what you want to wish for. I really wanted you to wish for something that you will remember. Something like a big fancy playhouse or tree house. Make a Wish sent a parents packet that explains how the whole thing works. They said that the wish should be 100% yours. Even if it is something small and simple, or big and extravagant. We should let you be completely selfish and pick something that YOU really want. So, I have adjusted my thinking and tried to get you to think about what you really want. The only thing is it changes by the minute. Last time I asked you said, "a cow and a horse." (we had just sent our cows to auction). Before that it was a tree house, before that a toy dog, before that a barbie house, and before that another American Girl doll with accessories. It seems to change based on what commercials you see on TV, and whats going on day to day. I want it to be your choice, but I also want you to pick something lasting. Not a little toy something that dad or I could get you. Something special and magical...or memorable. But what? Guess we'll all be surprised.

Another exciting event this week has been the appearance of little sprouts of hair. I took a pic a week ago of you head and you had just a touch of peach fuzz. Then I took another today and I don't know if you can see the difference in the picture, but it has thickened a ton! You actually have little hairs all over your head. We were super surprised because its WHITE! Don't know if that's the way it will always be. Maybe it'll grow in blonde (Carly's got her fingers crossed...she doesn't like being the only blondie), who knows. I just assumed it'd grow in the same color. Everyone has said it usually comes in pretty curly though. I miss your beautiful curls. That was always something everyone noticed first about you. You had so much thick beautiful hair that hung in curls around our face. You just let it hang in your face too. I would pull it up, and you would pull it out. I had to keep "reebee headbands" (your word for rubber bands) in the kitchen so I could pull it back out of your face! So beautiful it was. So shiny and healthy. I miss it.

Your cute head one week ago...

Your cute head today...all the fuzz is hair!
Not a blurry picture.

Just though I'd throw in a "before" picture. This was
the day we brought you home from the hosp. after
diagnosis. Your hair had already started to thin.

Scott came and drew some blood yesterday to check your counts. I cant believe how well you do. You just lay on my lap while he draws the blood and chats with you. You made him a card. It was cute. He told you last week that this week would probably be his last visit. He doesn't see kids much in Maintenance. So you wanted to make him a Thank You card. You are such a thoughtful kid. I don't know how you do it...what 4 year old thinks about Thank You cards?? Only really special ones.

I was shocked and stunned when your lab results were faxed over. (I have them fax the results to me too, so I don't have to wait for the clinic to call to find out what they are) Your counts had actually dropped to 700! What? They had to be 750 to get chemo. The nurse said its not uncommon to have to delay Maintenance a week or two because the ARAC drops your counts 1 to 2 weeks AFTER receiving it. I was still surprised. I really expected them to be good enough. So, instead, were having another CBC at home next Tuesday, and then if counts are good we'll be doing your chemo and backpoke on Wednesday. (because Thursday is Thanksgiving) Hopefully that'll be good, and you'll feel good for Thanksgiving. That would definitely be something to be thankful for.

Such an amazing girl!

2010-11-12T09:18:00.000-08:00

My Wee-Mee is back! What a difference a week without chemo, and some fresh blood and platelets can make!

Each day you wake up more and more like your old "pre-cancer" self. You are running (yes, running), and riding bikes, and playing with friends, and talking like crazy...Ive never heard you talk so much! Not to mention your wrestling with your daddy again! This is huge!

Before you were diagnosed you and dad used to wrestle and rough house nightly! It was so funny to watch. You had NO fear. Daddy would flip you around and throw you in the air and you would laugh till your belly hurt then say "again, again, again." My favorite trick you would do was when you would sit on daddys shoulder while he was standing up. Then he would hold your wrists and ankles (like you were hog tied by his hands), then he would have you fall forward, off his shoulder, head first between his legs! It always gave me the heebee geebees! I couldnt believe you would trust him enough to free fall face first with no hands...just him holding you. It was crazy to watch.

When you started having "issues", and your cancer symptoms started to show up, you seemed to lose confidence in yourself. It was like you were all of a sudden afraid. Yours and dads nightly wrestling matches got fewer and fewer until they disappeared. You cant know how nice it is to see you playing again...like your old self. The confidence seems to be coming back. I think that your lack of decent blood, and all the weakness, made you light headed and nervous. Something you were far too young to verbalize. I was worried I'd lost that part of you forever. Im so glad to see it coming back...even if just a little.

Scott, your home health nurse, came yesterday and drew some blood. Even though your not getting chemo this week, they wanted to watch your counts to monitor your progress. Turns out your counts were up again! Woo Hoo!! They went up from 500 last week to 800 this week! It never ceases to amaze me how well your body bounces back from treatment. I wish I was as resilient as you. If you feel good today, then you enjoy every minute of it...your not worried about tomorrow. You live totally in the moment. I wish I could be more like that. Im always worried about how your gonna be tomorrow, and the next day.

One thing is for sure though...were going to live it up these next 7 days before your next treatment! Today were going to visit Grandpa Max in the rehab center (he had to get hip surgery), then were going to rake leaves at Bill and Jeannie Stevens house. Bill passed away last night and we are going to really miss him. He was (IS) a great man. Were going to do the leaves to help out Jeannie. You have always really liked Bill. You would talk to him, even when you were in your yucky treatments and didnt talk to anyone. He was always calming, and Im sure it helped that he always had a sucker in his wheelchair for you! He will be missed.

Tomorrow we are going to a Hope Kids activity. The Megamind movie screening which I am excited about. So is everyone else...its going to be a completely full theatre! Maybe we can even do church... at least sacrament meeting as a family would be nice. Looking forward to a fun week with my family.

After Scott drew some blood, you wanted to play doctor.
You usually do. Today you had a live subject...not
just one of your stuffed animals or dolls!

Who needs platelets anyway?

2010-11-05T22:47:00.000-07:00

Apparently you did, cause when I talked to the nurse this morning they said to bring you in. It was my first time "all alone" without another adults help. I should have brought reinforcements.

We just got off to a bad start. You were in good spirits on the way down. Then I realized I forgot the EMLA. No worries, we'll just borrow some of Pams (the "weighing nurse" you call her cause she does your height weight and vitals at the start of clinic appts). We put some on when we got there, but she didnt have press and seal so we had to use a mini window sticker. No prob...or so I thought.

Your poor skin was raw to begin with from yesterdays multiple port/sticker removal. Not to mention the 4 bandaids we went through when you wouldnt quit bleeding. So, when we took the little EMLA sticker off it kinda hurt. Which was ok, until they had to scrub (literally) your port with a chloroprep cleaner. You screamed bloody murder it stung so bad. I blew on it to cool it of a bit, and the nurse tried to be gentle but it had to be done. Poor kiddo. It LOOKED like it hurt, cant imagine how bad it felt. To make matters worse they had to put another window sticker over your freshly sterilized and accessed port! Luckily, the understanding nurse put an special mesh bandage over it that comes off much easier when your all done.

Once you were hooked up they gave you the usual Tylenol/Benadryl combo (to pretreat for allergic reaction to the platelets). I explained to you before hand that it would probably make you feel funny and sleepy. You said thats ok cause you just wanted to watch a movie in the Infusion Room anyway. So, after all that we headed to infusion where you got increasingly aggitated. I knew it was because the Benadryl was kicking in. You kept grabbing your head and rubbing your eyes. I knew the feeling from when I was younger. Id had an allergic reaction to something and had hives covering my legs and back....the docs gave me a Benadryl shot and the hives went away, but the medicine made me feel really weird. REALLY weird.

I started a movie for you in an effort to distract you, and it worked for a minute. You kept crying out that your port hurt, and the sticker was itching it. Im sure with all that raw dry skin it was very itchy. Every time youd cry out it'd scare Tucker and he'd start to cry. Id comfort you, then try to calm him down. Back and forth that went for about a half hour when you finally crashed and fell asleep. It was good cause then I could try and get Tucker to sleep. He was asleep for maybe 10 minutes when you woke up crying (rather loudly) that your port hurt and you wanted to go home. Tucker woke right back up and the nurse came and unhooked your platelet tube. I told you reassuringly that we had to wait a few minutes then the nurse would unplug you and we could go.

That was a big mistake. You lost it instantly. You DID NOT want someone messing with that sticker. When the time came to get it done I told you you could choose to sit on my lap and have the nurse do it or sit on the chair and have me do it. You chose to sit on my lap, but as soon as the nurse started lifting your shirt you lost it again. I have never seen you scream and throw a fit like that EVER! Not even on steroids! You were kicking and screaming and arching your back. Flopping around. The nurses tried to pin your legs down, but stopped when you said you need me to take you potty first. I took you in the bathroom to try to calm you down and help you go. You went but were having a hard time calming down so we stayed in there a minute till you did. It was really hard for me to watch you have such a hard time. I kept trying to tell you they didnt have to put any cleaner on it so it wouldnt hurt or sting at all, but there was no reasoning with you. Meanwhile I could hear Tucker in his stroller crying.

I finally got you to take some slow deep breaths to help you calm down. I could see in your eyes that you wanted to calm down, but even you couldnt control your feelings. You kept saying "Im just scared mom, Im just so scared mom..." It breaks my heart that you have all this to deal with. FINALLY you calmed down and I RE-explained that there would be no stinging cleaner, and that if you could hold really still for the nurse I would take you to the gift shop after to look for another Unicorn doll (you had lost one given to you in the hospital by Ry). That seemed to be a good motivator. You wanted me to hold you and told the nurse to go extra slow. She promised she would and you were very good after that. The un-plugging was painless and you even got a Princess and the Frog bandaid. All the while, Karen (one of our fave nurses), held Tucker to calm him down. Thank heaven she was there.

There were no unicorns, so you picked out a little stuffed puppy that came in a little cloth carrier. You named it Skittles, then Sophie, then Hallie, then Sam, and just before bed it was Skittles again. You seem to love it, its pretty cute. And worth every penny.

Yikes, what a day! I am exhausted. When we got home we sat on the front porch and enjoyed the crisp fresh air. It felt good after being cooped up in the hospital all day.

We watched the beginning of another beautiful West Point sunset and I was reminded that everything will be ok...and so will I.

Halloween in the hospital, and meds at home!

2010-11-04T22:15:00.000-07:00

I have to say, when we left clinic last Thursday, I never thought we'd be headed back with a fevered Wee-Mee the next day!

Friday started out great...played with the neighbor kiddos outside and seemed in good spirits. Then about 4 in the afternoon you started complaining of a headache and wanted to lay on the couch. You were totally out in less than five minutes and didnt wake up for 3 hours!! I had made and cleaned up dinner, and we were deciding what to do with the rest of our evening. After you woke up we new pretty quick what we were gonna be doing! You woke up complaining of back and leg pain...I gave you Oxycodone (we cant give you Tylenol cause it would mask a fever, and Ibuprofen thins your blood and thats a no-no for leukemia kids) and that seemed to help.

Sooo sleepy!

Then you started to get droopy eyes...my heart sank. You, and your sisters and brother have always gotten these glassy looking droopy eyes when your sick and have a fever. As soon as I saw those sad eyes I knew... We took your temp and it was 100.4. The docs say when its 100.4 you wait an hr, retake the temp and if its the same or higher we have to bring you in. We called after 45 minutes and the nurse said to check again in 30-45 minutes and if it had gone up to even 100.5 to bring you to the ER. So, when the time came we checked and decided it was time to take you in. Its always nerve racking and scary.  You were scared and didnt want to go. Its been a long time since you had to go in for a fever so we had to do a lot of reassuring and comforting.

Once we were ready to go (11pm) dad and I decided it'd be better for Tucker (who was asleep in bed) if I stayed home with him.  Hes been getting teeth and so we knew if we woke him up to bring him down with us he'd probably be up all night, and fussy. It was so hard for me to watch daddy drive away with you in the truck and stay behind. I had to fight back the tears. I want to be a good mommy to ALL my kids and it stinks when you cant be there for everyone. Alyssa and Carly had gone to have a spend-over at Grammy Shepherds and so it was me and Tucker, alone in the house, while dad took you down.

I told daddy to keep me posted on what was going on...no matter what time it was.  He called me at 2am and said that your ANC came back at 600, but since you had been getting daily chemo, at home they knew it was going to go dip down even lower. They decided to admit you and have you stay over. The rule is that you have to be fever-free for at least 24 hours before you can go home...

Well, Saturday (Halloween) you had a pretty steady fever. Everytime the tylenol wore off it'd spike back up (they can give you Tylenol at the hospital, but we cant at home). You seemed to be feeling ok though....your spirits were good. Dad went home about noon to spend some time with your sissy's and take them trick-or-treating, and Tucker and I stayed to keep you company. He was a bit more of a handful this time around, but he kept you laughing with his silly squeals and squaks. You kept mom busy trying to keep you entertained! We did about 5 Halloween crafts, and played with a doll house they brought in, and watched movies, and read books, and colored. I have to admit it was kind of nice to hang out with you and not have to worry about going anywhere or getting anything done...just some 2 on one time (Tucker was there too!) I should do that more often...just play.

They're amazing at the hospital..they really aim to please.
Look at you..actually having fun in the hospital!

This was Bauer. A therapy dog that came to visit, and you
LOVED him. You love all the Therapy dogs we meet. Bauer
is a King Charles Spaniel and you got to feed
him his favorite treat...Cheerios!

About 4pm on Saturday they had to give you another dose of Tylenol and then your fever never spiked back up. I kept waiting for your fever to come back again but was so relieved when it didnt! The nurse said if it it stayed away we could go home the next evening!

Sunday morning came and we found out your ANC had dropped to only 300, and your blood levels were low. They decided to give you another blood transfusion, and said that we could still take you home, even though your ANC was so low, as long as your fever didnt come back. It didnt, but we had to give you IV antibiotics every 8 hours until your ANC was 500 or higher. They said they would send home health out the next Thursday to check it again. I never saw a happier kid! You were so excited to come home!

Blood...thank heaven for donors!

Eating pepperonis and getting blood..two good
reasons to smile!

I am always amazed at how much better you look after they give you blood! Your cheeks get all rosy and your energy levels go up. It really brings the life back to your little body. It makes me think of that story from the scriptures...The one where the lady has had a blood disorder of some kind for 12 years, and spends her fortune away on doctors to heal her and no one can. She hears Jesus has come to town and feels like if she can just get to Him and touch His robe she would be healed. She struggles through the crowd and touches the hem of Christs garment and is healed. Jesus could feel the power to heal her leave His body and he spoke to her and blessed her....I am always amazed at her faith, and yours. I can see you reach out and faithfully accept the help of those around you...and its working...you are being healed! Im so grateful for modern medicine! What a blessing it has been to our family! That, along with the countless prayers and priesthood blessings, are why you are doing so well!

Even though I knew it was bound to happen, I had a harder time than I thought I would seeing you in the hospital again. It brought back a flood of terrible memories for me. Im grateful the experience was much easier on you this time. It'll be good for both of us to replace old, bad memories with good ones.

This is you "flexing all your muscles". Dont know
why you do it that way, but I dont correct
you cause its cute!

Coming home and giving you the antibiotics was a strange experience too. I can remember when we brought you home from the hospital the first time after you were diagnosed and we had to give you antibiotics. I was terrified! Thats putting it lightly. I was so afraid I would forget something or do it wrong or mess it up somehow. Plus I didnt think I could do it. We got through it and this past few days of giving antbiotics was nothing. I kept thinking, while I was hooking you up to the medicine, "This is no big deal..I cant believe I've reached a point where doing this to you is no big deal." It was almost an out of body experience and such a stark contrast to the way I felt 5 1/2 months ago. I didnt know whether to laugh or cry...

We've found when you suck on a hard candy
while getting your port flushed it doesnt bother your
nose as much. The ball in your hand is your
antibiotics. Kinda cool..its pressurized so we dont have
to hang it from an IV pole.

You were so good about it too. We had to give you the meds at 6am (ugh), 2pm, and 10pm. I was really worried about the first 6am dose. Not knowing how youd react I tried to give it to you without waking you up...that didnt work. To my surprise you woke up and said, "Oh hi mom, I didnt know you were there." I said hi and told you what I was doing. You said, "oh yeah...this is WAAAY better than doing it in the hospital mom!" I couldnt help but smile. What an amazing kid you are and always so positive!

Scott (home health nurse) came today and did a CBC. Turns out your ANC was exactly 500! Yeah! No more early morning meds! AND you were most excited about getting unplugged! No more tubey for you. You took a nice long bath with bubbles and a Barbies.

Perfect outfit for celebrating. Complete with cape, dress,
shirt, apron, dress-up shoes and leggings. All essential
for celebrating a few hours free of Mr Tubey!

Your platelets were low...the clinic called and said to watch for bruising and paticii (dont know if that spelled right). You have both, and when I unplugged your port access it bled for 15-20 minutes.Right through your bandaid, shirt, and undershirt. Gonna have to call clinic and see what they say in the morning...

Playdates and Tinkerbell

2010-10-28T19:37:00.000-07:00

We did some fun stuff this week. Since your counts were good we actually went out a little bit.

On Monday we went to Kohl's and bought me a much needed pair of pants...you were being super cute and sweet, and charmed the pants off the ladies at checkout. The lady behind me even gave us her "30% off your entire purchase" coupon! Thanks "lady behind us"!

Then Tuesday we had a play date with some fellow Cancer Friends! I met a mom at clinic that invited me to join a group of moms of cancer kids that meet regularly to chat and play. They have a group on facebook called Utah Moms of Cancer Cuties. It was fun for me to meet with other ladies who have the same worries and experiences as me, and I think you had a good time playing with some fellow baldies. When I told you where we were going, and who would be there you said, "Bald kids with cancer like me?? Do they have the kemia too?" When I said yes, you were pretty excited. Until we got there...you were feeling kind of shy and stayed close to me, but you didn't wanna leave when it was time.

You were being silly with all the fun toys at our play date.

You, and your fellow cancer friends!

Wednesday we had a ward dinner and trunk or treat. We didn't dare take you indoors with all those people so I took Alyssa and Carly to the dinner, and then you, dad and Tucker met us there for the trunk or treat. I felt bad telling you you couldn't go, but you seem to understand. I don't know why you had to grow up so fast, but I know you have...your amazing. When you came you were pretty cold, and very shy! Everyone at church makes a fuss over you when they see you and it makes you uncomfortable. You would rather blend in and be "one of the shepherd girls" like you used to be. I couldn't get you to say trick or treat, or even say thanks. You just buried your face in my legs and hid. Everyone was overly generous with their treats, though, and you came home with a Dora backpack full.

You were ready to go, but had to wait until the trunk or treat
to come. You are such a good little girl!

Everyone in the neighborhood except you in this picture.

You can tell by your little face that you are feeling
a little overwhelmed and shy.

Today was a special day at clinic...Tinkerbell was there! She was the cutest bald Tinkerbell I've ever seen! Ok so it was you in your costume, but you had everyone at clinic fooled!

What a cutie patootie!

Clinic was fairly uneventful...which was nice. You had your counts checked and your ANC is only 700. (heavy sigh) Looks like we'll be on lock down again. We'll be giving you chemo at home the next 3 days and so it'll probably dip down even lower. They say its not uncommon to need another transfusion during the next couple of weeks...guess we'll see.

They always have fun little crafts in the waiting room.
Today it was x-rays cut out in different Halloween shapes
that you can decorate with glitter glue.

Daddy reading books while we wait for the doc.

Dr Fluchel checking your tummy...it tickles!

Chemo time...Cancer stinks!

Soooo sleepy...but you'll never admit it!

Asleep before we got out of the parking lot!

The good news is you don't have to go back for treatment for 3 weeks! Unless of course you need a transfusion...they'll be checking your counts each week to see where you are.

We asked doctor Fluchel what he thought about doing sedation with you during your back pokes and he seemed a little hesitant. (We can sedate you and do it in clinic and its faster, but your not all the way asleep like you are in RTU) He suggested we do it in the RTU next time, then we won't need another for 3 months and can try sedation then. He seemed more comfortable with that so thats what we'll do. Everyone I've talked to has said how fabulous sedation is over being put all the way out, so I was surprised when Dr Fluchel was hesitant. Now I dont know what to think...

I hate that every time we go we get a different set of answers and a different set of suggestions depending on the doc we see. Some are really laid back (like your doc Fluchel), and others are more strict. Its frustrating sometimes cause I never know if I'm a worry wart or not as concerned as I should be. I don't want to be a crazy person, but I also don't want to keep you in a box all winter either! I am growing tired of the emotional roller coaster. Your doing so well and I want to focus on the positive...I just hate that I never know whats going to happen. Alyssa came home from school yesterday and said that there was only 14 kids in her class, because the other 10 were home sick...mostly with the stomach flu. Awesome. I make you and your sisters sanitize all the time and I even send sanitizer with your sisters in their lunches so they can sanitize before they eat, and we've been healthy so far. I just dont want you to have to stay in the hospital again, and if you get a fever with low counts you'll be admitted for 2 or 3 days no matter what. Just need to keep praying for health through this winter...were doing all we can here and what will be will be.

A long day, but a good one!

2010-10-25T09:44:00.000-07:00

We took you last Thursday for the first treatment of the last half of DI. I worried how you'd do with no food in your belly, and a little bit of lingering appetite from the steroids, but you did awesome! You were pretty nervous when you got plugged in, but were ok after that.

I thought it was going to be a long day...I was right. We left the house at 9am and didn't get home till 4! When we got up to clinic they got us in a room pretty quick because of your RTU appointment. They accessed your port with a needle we brought from home. You like the home health needles better because they lay flat against your skin, and the Primary needles have a clear plastic top that pokes out and bugs you. I thought that since you were going to have to stay plugged in till Sunday you'd do better with the flat one. We met with doc Frasier (hes a research doc, but has to do clinic days too). He went over all the info about your new drugs and side effects. I hate that part cause it puts a pit in my stomach. I hate not knowing how you'll react. Its anxiety... a lot of anxiety. As we were talking to the doc he said "one more in-office treatment till Maintenance" ....WHAT?! I thought we had 3 more...I thought there was 4 weekly treatments in the last half of DI? The doc said only 1 more in office, plus the three we give at home! I was so excited!!! I cant believe it!! One more in-office treatment and then 3 weeks off! Your due to start Maintenance on Thanksgiving! (they said they'll probably do it the day before Thanksgiving) I cant believe were nearly there!

So here's what your treatments are like this half. On Thursday you got a back poke, then we had to come back up to the clinic for chemo. You got fluids through your port first(40 mins) cause the new chemo can be hard on your kidneys... so they want you well hydrated so you can pee out the chemo quickly and it doesnt sit in your kidneys. Then it was the Cytoxan (30mins), then anzemet (anti-nausea 5 mins), then Ara-C (3 min). You also got a prescription for 6TG that you have to start taking orally at night.

This was your first visit without hair. I tried to get you to wear a headband...I don't know why. I just want you to. You wore it till we got to the hospital then took it off and left it in the car. On our way downstairs from the clinic to the RTU 2 people comment on how cute our "little boy" was. I was totally bugged. I don't know, maybe it was protective mother instinct, but how could anyone think my cute baby girl was a boy!? To be fair you had just a HopeKids t-shirt on with a long sleeved white shirt under and jeans, kinda boyish I guess...but your shoes were bright pink and sparkly! How many boys wear bright pink and sparkly light up shoes? I really don't know why it bugs me so much..but it does.

I have to admit that I have a hard time when you go with me in public. I love that you can go places with me...Ive missed my little friend at the store and running errands. But I hate all the staring eyes, and pitiful looks! I wanna tell people "Shes fine, shes a normal kid just like yours...quit staring at my beautiful brave little girl!" I know how it is though...I would've looked twice too. Its hard to see a bald kid and not wonder what they have and how they are doing. Its hard to see a sick kid, but its harder on the other side....with people looking and wondering. I just don't want YOU to feel different. I want people to notice you for your cuteness again, not for your sickness. Oh well I guess. No use stressing about something I cant control...this too shall pass....eventually.

After we got home from clinic on Thursday you pretty much laid around all day. You seemed totally wiped out. You slept really good Thursday night and even slept till 10am the next morning! That was definitely a first for sure!! You laid around again Friday morning, but by the afternoon you were out playing again. You were even mad when I had to call you home to get chemo!

Still asleep at 10am! Even I cant sleep that late!

Chemo at home is a strange experience. I cant believe I have chemo in my fridge! Its such and indescribable experience to give you baby chemo your self. Its not right. I don't like it, but its WAY better than trudging down to clinic 4 days in a row. I was mostly worried about de-accessing you. You hate getting the sticker removed and you have a hard time sitting still. It was daddy's turn to stay home from church with you and so he was the one who got the task. He gave you your chemo, then de-accessed you without a hitch! He said you were nervous but you did really well. I think the wrapped present was a good motivation to hold still. We wrapped a floor size Toy Story coloring book and some markers up as a prize for being good while getting un-plugged. Whatever works...plus, you earned it!

Dad is holding your shirt up. You kept trying to pull it down
cause you can feel the cold medicine under your skin!

You have done pretty well with being accessed. You hate it though. It took the first few days to get used to, but then you realized you could still do all that you wanted to while your plugged in. Hopefully next week you wont have the learning curve again.

As far as side effects though, you are amazing. Its like nothing to you. Your not sick or anything! Daddy says maybe after next week you will, once you have more in your system, but I don't know. I hope not. Your such a beautiful brave little girl! A fellow cancer mom posted a neat song/video on her blog that I think sums you up...and had me in tears!
http://youtube.com/watch?v=cyVzjoj96vs

Woo Hoo!

2010-10-20T14:25:00.000-07:00

Scott came over today and drew blood so we could see if you made counts....drum roll...YOU DID!! Woo Hoo! Your ANC went from only 100 to 1700 in only a week!

Sideways picture of Scott from your point of view.
You took this pic while laying on your bed waiting to get unplugged.

I am consistently amazed at your super strong little body! I cant believe how well you deal with all the pokes and prods, but also all the poison/chemo thats gets put into your tiny body...what a trooper you are. What a blessing!

You were so excited you said "Woo hoo! I knew it, I knew it, I knew it!" You sure did. You've told me several times over this last week that your counts were getting better...I dont know how you know, but your always right. We have a clinic appointment at 10:30 am, and an RTU appointment at noon. Hopefully all goes well tomorrow and you dont have too hard a time going without food until after your back poke...

Woo Hoo! I knew it, I knew it! I think Ry thought we were crazy
for doing our silly happy dances... but she clapped and
seemed excited anyway...even if she didnt know what for!

Amazing people...Amazing things

2010-10-18T22:27:00.000-07:00

What an amazing weekend we had. Saturday was a big day.

Jaylene...a saint!

There is a wonderful woman in our ward named Jaylene Page. She was baptized and went through the temple not too long ago. She teaches in Relief Society and I always look forward to her lessons. She is very humble and excited to learn all she can about the gospel. Well, this sweet lady came to us in August and asked if she could put together a fundraiser for our family to help off set medical costs. I have to say that its not always easy saying yes. My pride (I guess its my pride) wants to say no thanks. I feel uncomfortable in situations where I have to accept service. Its humbling to be on the receiving end, but I guess thats a good thing. I've learned a lot from the generosity of those around us.

Anyway, when Jaylene came over, she said she had a bunch of ideas. She wanted to do donation jars in businesses around town, and then have a boutique with a raffle and vendors to earn money. She told us she would take care of everything and all we had to do was nothing...except come to the boutique if we could. Well, she had had the donation jars out during Sept. and Oct., and she sold canning funnels as a fundraiser, and she had tons of local businesses donate gift cards, and merchandise for the raffle. She also had a lot of local people donate things for the raffle as well. She charged $3 for one raffle ticket or $5 for 3. Then she had a lot of people sign up to come sell stuff (vendors for Scentsy candles, Pampered Chef, jewelry, craft and other homemade items). She charged those people $30 dollars to participate and collected that money for us. The response was HUGE to say the least. When we went over there on Saturday morning I couldnt hardly restrain the tears. There were so many vendors she had to move furniture out of her house! The vendors filled her upstairs and down, and they even had a bunch outside. The weather was beautiful and couldnt have been more perfect! She had so many things donated for the raffle that they did give aways every half hour, and for a while every 15 minutes! It was so amazing, and so humbling, and so overwhelming that so many people would give of their time, and their talents, and their money (especially in these tougher economic times) to help our family. I dont know how Im ever going to repay the kindness shown to us. It will take a lifetime of service and I look forward to the task. The total money raised (so far, theres still more trickling in) was $2300! What an amazing response. What amazing people. If I could think of a word stronger than amazing that would be how I feel. Tonight for family home evening we took her some dinner. A small way to give back, but she seemed to appreciate it. Thank you Jaylene!

Carly out front...there are still more people setting up!

There are so many vendors out here I couldnt
get them all in one picture.

This is the other side of the yard...

Indeed there was...

You can see books on the right, jewelry in the
back, and the raffle stuff in the back left.

Hairbows and crafts on the left, avon to the right.
And then refreshments and a silent auction
around the corner.

The raffle prize table.

You really shouldnt have come with your counts so low,
but I wanted you to see all that people were doing for
you. You were happy with a cup full of potato chips!

Alyssa getting some refreshment.

Even more downstairs..Alyssa was eyeing some bracelets.

They had the cutest aprons and bibs for sale!

You can see by your wrist that people were spoiling you!
The hat I bought for winter, but you love it so much you
havent hardly taken it off since. You call it your piggy
tail hat cause its got two braids on the sides.( the
things your waving)

After we left the boutique we came home and rested for about an hour or so until Danielle and Ryan (daddys cousin and her hubby) showed up. They were bringing 2 of their HUGE draft horses and a wagon over to give us a ride. Also invited were Aunt Jamie and her kiddos, Lacey and her kiddos, Grammy and Grampy Shepherd, Great Grammy and Grampy Sanders, and Aunt Shelley. I sometimes forget how much you love animals! It was so fun and you took right to Ryan and Danielle. They even let you sit up front and "drive the horses!" You were so excited, and thought you were pretty hot stuff. It was so nice of them to go to all the trouble to bring the horses and wagon over so you could have a ride. We were gone for about an hour long ride and had a good ol' time. You didnt want Ryan and Danielle to go! You've asked every day since when we can do that again. Hopefully soon! How did we get so blessed?! Seriously...We are surrounded by such good, kind, and giving people. I dont know how we got so lucky!

You look so cute in your piggy tail hat!

You said you were bein a rockstar while you waited for
Danielle and Ryan to get the horses ready.

You got to pet the HUGE horses.

Too many people to fit in one picture!

Almost time to go...

"Im kinda nervous aunt shelley. Will you hold my hand?" You were
so funny, you kept playing with Shelleys hair, running your fingers through the back.

You riding up front...

You had so much fun...you can tell by those sleepy eyes!

Counts, Chemo, and Surgery...Oh My!

2010-10-18T20:52:00.000-07:00

Well a lot has happened since my last entry, so Im going to divide what would be one really long post into two medium sized posts.

First of all it has been almost 3 weeks since you had chemo! What a difference 3 weeks can make! You look and act like your feeling better every day. Your color is good. Your spirits are up, and you are riding your bike!! Woo Hoo! I love that! It makes me so happy when I get glimpses of the old WeeMee. You definitely still tire easily, and you still have a good size appetite, but thats easy stuff!

Lunch outside with sissys...what a good day!

Your last chemo was on Sept. 30th. You were supposed to have the 7th off and then get chemo again on the 14th, but (to my complete shock) your counts had dropped!! They were 300 on the 7th (anything under 500 is considered extremely high risk for infection.), which was not surprising because the docs had warned us that that would happen. However, they expected them to recover between the 7th and 13th so you could get chemo on the 14th. They needed to be 750. Your home health nurse, Scott, came and drew blood and said he'd fax the report once he got it. When he did I was totally surprised to see your counts had dropped to only 100!! When we broke the news that you werent going to have to go to clinic the next day... I dont think you could have been happier. I was disappointed though. I am so anxious to get this intense phase over with and behind us. I hate always worrying if someone comes over that they are bringing in germs. I just found out Alyssas friend Abby is really sick with the pukies. She spends a lot of time over here. In fact she was here on Saturday, and at church with Alyssa on Sunday. Im making myself sick worrying that your gonna catch it and have to go in to the hospital. If you get even just a cold with a fever...its an automatic few days in the hospital with your counts as low as they are. I dont want you, or I, to have to do that again.

Recently, daddy's cousin Lacey told me about a family that just found out their 9 year old has AML. Her chances arent so good as yours, and her cancer is a lot more aggressive. I keep thinking about this poor family and cant help but cry. How terrible a thing to have to face with a good prognosis like yours, but to have to face this knowing the odds are not in your favor...I dont think I could do it. It says a lot about the strength of this family. The Lord knows they can do it. Whenever Im having a hard time I always think about how the Lord has promised us that we will face no trial we cannot overcome. I take great comfort in that... knowing that the Lord thinks I can do this. I hope the family of that little girl knows that too. They have a long hard road ahead and my heart goes out to them. I will remember them in my prayers.

It turned out good that you didnt get chemo for one reason. We found out on the 12th that Alyssa had to get surgery on her foot! We took her into the dr because she had a bump on her foot that wouldnt go away and was hurting her. Turns out it was a lipoma (a fatty tissue cyst) that had to be removed....on Thursday. The same day you were scheduled for chemo. Me and daddy decided he would go with you and I would stay with Alyssa. Weird to think he'd be at a surgery for you (another back poke) while I was at a surgery with Alyssa. Amazing how everything works out. Alyssa was a trooper and has bounced back with little to no pain. I have such brave, tough kiddos.

We made her a Get Well poster and got her a present to
cheer her up...looks like it worked!

Ewwww...gross huh?

Tastey treats...

2010-10-09T21:02:00.000-07:00

On a lighter, and funnier, note... you have been having some funny cravings.

Sooo sweet!

The other day you asked me if you and Ry could have some oreos. I said sure. Then you asked for some ranch to dip it in!? I laughed and you covered your face and said, "Its gooood." I said, "how do you know?" You said, "well, it sounds good..." Sounds logical to me.

I got you all set up and took this video....

Ry wanted to try. She said it was good but she didnt want any more ranch. She'd just have more oreos.

I couldnt help but laugh...your so cute. Its like you are embarassed to ask for food because you know your asking all the time, but you just cant help yourself cause your "sooo hungry." We were watching a family show and you asked me for another snack. I told you you just had dinner and you said, "but mom, I still have stewoids (steroids) in my body that makes me hungry..."

Bald IS beautiful!

2010-10-07T21:00:00.000-07:00

I cant believe how hard this was. With all that we have been through these last 6 months, and knowing all along it would happen, it was still traumatizing. Well, it was for me...

When I took your piggies out for the last time (for who knows how long) I really had to try hard not to cry in front of you. I ran my fingers through your beautiful curls as you sat on my lap and I could smell your shampoo. There were HUGE chunks of hair coming out in my hands! Id run my fingers through and have a handfull of hair in my hand. So Id set it in a pile on the couch and do it again. The pile was huge. You wanted me to hold you on the porch. Your back was hurting. So to the porch we went. I just kept running my fingers through your hair and putting the hair in a pile.

One of the many piles of hair.

We had talked about your hair that morning. I told you I thought we should shave it since it was coming out all over and sticking to your clothes and bedding and pretty much anything you touched. You said you wanted to have dad shave yours then you could shave dads (dad had already suggested that idea to you previously). So we planned on doing it that night. So, as we sat on the porch, you said you were ready, but you wanted Ry to come watch. I though that was a good idea. I didnt want it to be a big surprise the first time she saw you, and I thought it was a way we could make it fun. It turned out to be a good decision.

When we went over to invite Ry you were basically bald on the top of your head. When Ry came to the door she looked at you and didnt even seem to notice. She said, "McKall your hair!" Then right after that, "Come see my new bunkbeds!" So you went in and saw the bunkbeds...all the while me and Angie were struggling to fight back tears and hold it together. You and Ry talked and played like you always do. So, we headed back home and got everything set up for the shaving.

Bye Bye ponytail!

You can see how bald you were on the top
before we even started. I only cut off the back...
I cut nothing off the top!

This is what it looked like from the back once
we cut the ponytail off. You can really see
how much it had thinned.

You sat up on the stool and we wrapped you in a sheet. Then I cut off the long hair and dad started to shave. You did awesome at first, but then started to have a hard time. You were really tired, and your back was hurting, and you just wanted to be done. But, as usual, you were One Tough Chick and hung in there.

Let the shaving begin!

What a trooper! Cant believe how tough you are!

Oh how I love that smile!

You couldnt be in better hands...Daddys a pro!

Starting to have a hard time. You were itchy, and tired, and
your back hurt! Poor kiddo.

Ry was awesome! She kept asking me if I'd shave her head! She said, "Lea, I really wanna be twinners with Mckall. Please shave my head, Lea, please!" You said, "Ry, you cant ask MY mom, you have to ask YOURS!" She kept asking over and over again...it was cute, and made you feel more special than self conscious . Your sisters were interesting to watch too. I told them before hand to be positive with you and not let you see if they were upset or didnt like how you looked. Alyssa was very sweet with you and kept telling you how cute you looked. Carly couldnt even watch. She held it together until you were in the shower then started to cry when I asked if she was ok. She didnt like it for the same reason I didnt. It is a very visual and constant reminder of how sick you are.

You are very mature for your age. I wish I knew exactly how your process all that you have to deal with. It was like you were sad...like you had just lost a good friend. Like you knew it was going to happen, but were a little depressed when it did. You're amazing. Once you were done your sad mood instantly turned around when it was your turn to shave daddy. It was a good time and Ry was really jealous by then! She wanted to be "twinners with kall and Jake!"

I helped, just a little..

If you have to be bald, be bald with daddy!

Your back was really hurting you by this point. You can
tell by the way your standing.

After the haircut it was bath time and you felt much better. You were hungry and wanted some pepperonis and so we caved and let you have some in bed. You are so beautiful, even without hair.

You got all the hair off in the shower, and now your
getting "soaked" in my bath salts.

Mmmmm....pepperonis!

Since then (the last 2 days), you've made several comments about how you dont like being bald. You ask me "how many more weeks till my hair grows back?" I try to keep it positive though. This morning after we got you dressed I said, "Lucky you! You dont have to go get your hair done! You are all ready, already!" You seemed to like that thought. Like it makes you special, cause all the rest of us girls in the house have to endure a hairdo and you dont! Most of the time you dont seem to notice, but every once in a while you make comments about it. Im sure it will get easier as you get used to it.

Neighbor Ali gave you this shirt...it says "Super Girl Power"
Perfect for my little trooper.

In the mean time Ive tried to keep you relatively busy and distracted. We took grammy to meet grampy at the airport Wed then came home and worked on your preschool book. You did an awesome job learning to write and recognize the letter A. You also have been watching a lot of cartoons and reading a lot of books. I hate to see you feeling so blah...

Your hands were shakey while you practiced your A's.
I dont like that.

A delicious "little toast" and pepperoni sandwich
is always a good distraction!

You told me that since you cant marry dad when you grow up,
youre gonna marry Tucker. I didnt have the heart to tell you
hes off limits too!

In other news...your home health nurse (Scott) came over and drew some blood today. You looked very different from the last time he saw you! You have the steroid puffiness, and no hair! Im sure it was a shock to him, but he did a good job of hiding it. Hes very mellow and I think thats calming to you . You seem to like him. You did good as usual, and he faxed me a copy of your labs. Your counts are down even more. Your ANC is only 300, but surprisingly your blood and platelet levels looked good. We just have to hope we can continue to keep you fever free, and get your counts up to at least 750 by next Wednesday when they draw labs again. They wont do chemo on Thursday if you dont make counts. Im ready to get this phase over with and hope there are no delays.

Bald is DEFINATELY beautiful!

A lot can change in a 4 days...

2010-10-04T23:25:00.000-07:00

Yikes. Its been a rough last few days. Its been hard to watch you go so rapidly down hill. Truth be told...I hate it.

You are amazing how well you deal with how crappy you feel. You have dark circles under your eyes, you're emotional, your HUNGRY, and your tired. You want to play with friends, but dont feel well enough to play for more than an hour, and you're only playing quietly in your room. Not riding bikes, or jumping on tramps. Just Barbies, or books, or cartoons, or kitchen. Mostly books.

Dr Seuss was a genius!

"Read it one more time grandma!"

Ry came over and you had some fun. You were the doctor and Ry was your patient. She lay on your bed and let you "access her port" with all your new doctor stuff. You followed all the right steps again and Ry was excited to have a port and tubey like "kall". I am so grateful for your little friend Ry. She has been a blessing from heaven to you and our family. She is so patient with you when you are having a hard time, and you are both fiercely loyal to one another. She just "gets" you and you seem to "get" her. I know her friendship has been a good source of comfort and distraction to you these past few months. You two are amazing friends...its been fun to watch you grow up together. The other day I found you on your bed in tears cause you had gone to see if Ry was home and she wasnt. It was sad and sweet how sad you were. You cried like you had a broken heart.

You have her plugged in and are
taking blood

Now its chemo time..

The steroid appetite has returned in full force. Yesterday you had 5 pieces of "little toast" (sourdough bread toasted) just for breakfast and 3 for lunch. Today you had a whopping 7 pieces of toast for breakfast! Not to mention you have been through 3 bags of pepperonis in the last 4 days!! Youre obsessed. You follow me around saying "I sure love pepperonis mom, can i have more pepperonis please...just 4 more" so then I give you four and you say "i dont think that was 4 mom, I want more." I hate feeding you such garbage food, but the docs say to let you eat whatever you want because you wont eat anything once the steroid wears off. You only have 2 more days left. Then it usually takes a week or 2 for the side effects to go away. I have mixed feelings. Your cheeks are puffier again, not as big as before, but bigger than the last few weeks for sure. So is your belly.

"Little toast"...your 10th piece in
one day!

Pepperonis...4 is never enough!

Add water, and its a complete meal
as far as you are concerened!

You're so tired too. You fall asleep a lot..probably taking 3 or 4 small naps a day. Sometimes you just go lay on your bed and stare off into space. I wonder what your thinking. When I ask you, you say you dont know. I wish I did. Id love to know whats going on in that little mind of yours.

Random nap...

Random nap #2

Random nap #3

Random nap #4

Hair is everywhere. More and more comes out each day. It seems like it gets worse by the minute. Today when we were in the shower I had to keep pulling hair off the drain cause it was keeeping the water from draining. Then when we did your hair we filled up the sink 3 times. I had to keep cleaning out the brush and comb. You told me in the shower you wanted me to straighten your hair. I told you that your hair might come out a lot if we did. Since you have beautiful curls we have to straighten your hair with a round brush, and I was afraid you'd be bald by the time we were done. You had your heart set on it, and I couldnt say no. Today was probably the last time I'll get to straighten your hair for a few years...well, at least until its long enough to do it again. You still have a lot in the back, but the top and sides are rapidly disappearing. We had some errands today. Grandma DeSoto was with us, and since you couldnt go into any stores, me and grammy took turns waiting in the car while the other ran in. Me and you were waiting in the van while grammy was in the distribution center today. It was kind of a rainy day and there was a breeze so we had the windows down. You sat next to me in the front seat and we played "I Spy". Your cute sweater was covered with hair. You said, "heres some of my hair mom" and passed me a chunk. We started pulling hair off your sweater and off the seats and letting it go out in the breeze. It was kind of mesmerizing watching your hair blow away in the wind. We had a good time. When I looked up there was a lady in the car facing us (she was waiting for her hubby) and she was watching us with a strange look on her face. I wonder what she must have thought about all that hair flying out the windows...

Your hair sticks to my hands when I wash
it. I have to keep wiping it on the side of
the tub.

The camera doesnt pick up how much hair this
is. Its a lot more hair than it looks like.

Collected from your pillow.

Cant hide your hair loss anymore by parting
it differently. Too far gone.

I kind of had a breakdown the other afternoon. Not in front of you, just dad. I was getting ready for the day and your big sisters kept coming in asking me for things, and Tucker started to cry, and I was already worrying about you. I held it together, but your amazing daddy always seems to know. He came in my room to check on me and I just started to cry. I sometimes wonder how I can be a good mom to all of you and meet everyones needs...especially yours. Its hard. Dad did his best to reassure me and make me feel like I do a good job. Hes a good daddy...I hope you know what a blessing it is to have someone so in tune with his family. I am so grateful for him. Hes my best friend. Hes my rock, and I know hes yours too. Sometimes when you dont feel good you take it out on him. You can be short and mean, and physical, but I know its only cause you know you it safe. You can take it out on daddy and he'll always love you no matter what. Hes the most amazing man you'll ever know. You have been blessed and so have I.

Our hero...(daddy, not the horse!)

Another clinic visit...

2010-09-30T21:42:00.000-07:00

Well, we made it through another visit to the clinic. Fortunately nothing too eventful happened. Just a couple of things...

First of all Grammy DeSoto came with us to chemo in dads place. It was fun for you and its always good for me to have help. But we always miss daddy when hes not there.

Rachelle (the nurse that brings you toys) brought you a doll and a bunch of doctor stuff for you to play with. But not just toy dr. stuff...REAL doctor stuff. I had no idea you had paid so much attention to whats going on. You had everything (literally) the nurses use to clean and access a port. I was amazed as I sat there and watch you clean your dolls port site...using all the right steps. (first the alcohol prep pad, then the 3 sterile cleaning swabs, then the sterile scrubber) Then, to my amazement, they let you access your dolls "port" with an ACTUAL port needle. Once you accessed it you checked to make sure there was "blood flow" then put the window sticker over it. Then you proceeded to take your dolls blood and then transport the blood from the big tube to the little one (all of which rachelle had there for you) so you could send it off to the lab. After you were done with that you gave your doll chemo and de-accessed her. It was amazing to watch! You did little things that I have seen the nurses do, but never really noticed. For example, you pulled your gloves off by sticking your thumb underneath the glove by your wrist and turning it inside out on your hand, then used that glove to pull off the other one. Then you stuck your "blood sample" inside the glove and tried to tie a knot in it (cause thats what one of your home health nurses does to take the blood to the lab.) You were totally into it. You must've gone through three full sets of equipment before they finally made you a take-home bag of dr stuff. I was stunned to say the least. I knew you knew what was going on, but to be able to do it all step by step was amazing. You did things I'd seen done a million times,but never really noticed. I will be forever in awe of all you can take in and process.

You got chemo fairly uneventfully. Your labs came back and your ANC was low. (really long heavy sigh) We were expecting that but it still stinks. You level were only at a 700 which is considered a high risk for infection. Which basically means if you get any kind of fever 100.4 or higher you go into the hospital and will have to stay for at least a couple days. (double heavy sigh) A low ANC basically means your body has little ability to fight off infection. So, if you get a fever, we have to immediately start you on IV antibiotics and run blood cultures to find out if its a bacteria or virus. If its a bacteria they can give you a specific antibiotic to help fight the specific bacteria....if its a virus, we just have to wait it out. So, we need to hope and pray you stay healthy for the next few weeks.

The good news is you have 2 weeks "off". Next Thursday home health will come draw labs so we can check your counts (which they say will probably be pretty close to zero). Then the following Wednesday they will have home health draw labs again so we can see if your counts have recovered enough to give more chemo the next day. If they are good enough, we go in for a Back Poke, and a bunch of new chemos that I dont want to think about right now. Its too much to worry about all at once.

A series of photos of you giving me attitude...and
everything in between!

By the time we made it home you werent looking to good. You seemed really pale and you had dark circles under your eyes. You started the steroid again and have been an emotional rollercoaster. I never know if Im going to be screamed at, cried at, laughed at, or all of the above. You looked a tiny bit better right before bed, but not much. Your seemed in a better mood though...hopefully that translates into a good nights sleep for all. Im exhausted tonight.

Happy Birthday Wee-mee!

2010-09-29T15:55:00.000-07:00

Its been a week since my last entry and a lot has happened. The night you went to the circus dad and I stayed up late putting your birthday present together (a play kitchen). When we got it done we snuck it into your room while you were asleep so you would wake up to it. It was fun. I love giving you and your sisters gifts! The anticipation nearly kills me every time.

The cutest kitchen ever! You were super excited!

Birthday morning came and I had to wake you up early cause it was chemo day too. (I know...lame bday present). Waking you up is a delicate thing...especially on steroids. We never know if you're gonna wake up whining and crying, or happy, or worse. So, all of us (mom, dad and sissys) snuck into your room and i started to rub your back. You grunted an onry grunt and I said "happy birthday, birthday girl!", in the hope that it would cheer you up....it did (thank heaven). You shot straight up in bed with a big smile and we all sang Happy Birthday. Then you rubbed your eyes and did a little double take at the sight of the brand new kitchen in your room....it was cute. You said, "is that mine?" We said "of course!" and you ran over to it! Luckily you were in a good mood cause I told you it was almost time to go to clinic and you had to come eat your breakfast. You had requested cinnamon rolls, so thats what you got and they were a good start to the day. I could tell you were still pretty sleepy.

Once we were on our way to the clinic you quickly fell back asleep. I was a little surprised...you usually dont fall asleep on the way cause of all the anticipation. You were unusually shy that day. You had wanted to bring treats to share with everyone at clinic (like sissys do at school on bdays) so I bought a bag of candy so you could pass it out. Once we were there you didnt feel like talking and you were a little shy to share your candy. Mom and dad passed it out for you. You really had a hard time when it was time to get plugged in. You were nervous I guess. I think its the steroid. It makes all your emotions more intense and so I think the usual nervousness and anxiety felt a lot more intense. You struggled and I felt bad. Once you were plugged in you were ok, but still very shy and quiet.

After you had received all your chemo, and we were ready to leave, all your doctors and nurses came out and sang you happy birthday and gave you a present! It was sooo nice of them, and made you feel very special. You were so excited about your gift too! It was a little toy horse named Abby Apaloosa! You said, "I've always wanted one of these kinda horses! Its like Deuce daddy!" It was super cute. You were totally excited....we had to open up the box right there. I am so bummed I didnt have the camera because it was pretty special.

The rest of the day was pretty low key. Daddy told you hed take you anywhere you wanted for lunch and you said you wanted to drive straight home and have a "cheesy tilla" (tortilla) and play with Ry in your new kitchen. So straight home we went. You picked up Ry as soon as we got home and played all afternoon. By the time it was dinner time you were exhausted. I told you, you could pick anything you wanted for dinner and you picked "chicken tacos with beans" which was actually bean burritos, but for some reason you always call them "chicken tacos with beans." You ate really well but got more and more emotional and upset with each passing minute. You didnt wanna go to Carlys soccer game, so I stayed home with you. I offered to take you to ice cream but you declined. You said you just wanted to lay on the couch and watch cartoons. I knew you werent feeling well...who turns down ice cream on their bday?

Saturday night we had a little bday get together with Ry, and Aunt Heather and Uncle AJ, and their kids, and Aunt April and Roland. It was fun. We did dinner, then presents, then goody bags, then cake and ice cream. You got a cute new Barbie and a dress-up that matches your Barbies dress, and Ry got you a bunch of little goodies...one of which was an air horn! I had to take that one away after 5 minutes cause it got to be a little much and all the adults were getting headaches! You went to bed that night worn out, but happy.

I cant believe my baby's 4!

Presents are the coolest!

Twinners!

Sunday was your Primary Program! You did such an awesome job. Your part was the First Article of Faith and you said it perfectly. Grammy and Grampy Shepherd, and even Uncle Josh and Conrad came to see. It was such a good meeting. There wasnt a dry eye in the room during the closing hymn, "I Know That My Redeemer Lives". You and your sisters did an awesome job.

Sunday night we had dinner at Grammy Shepherds and celebrated your bday with all of the Shepherd side of the family. You had a lot of fun playing with cousins and opening presents. You got spoiled by everyone...and loved every minute of it. Im so grateful you were feeling up to it.

Looking back over this past week I have noticed a bunch of things.

One: You are amazing! How can you be doing so well? Well, I know how. Through the many faithful prayers of all who have prayed for you during this time. I have been overwhelmed by the number of people who say they are keeping you (and us) in their prayers. I also know of at least 4 people who weekly put your name on the prayer roll in the temple. I know that through this combined force of prayer, you have been blessed.... a lot....and so have I.

Two: Your an animal! You never stop moving. My previous thoughts about your ability to judge your strength and adjust your activity level may have been spoken a bit too soon. After watching you overdo it these last few days I've decided I need to intervene. Today (Wednesday), there WILL be a nap, and you WILL be taking it easy....whether you like it or not.

Three: The steroids are working... Ive decided I hate steroids. I hope that it works the way they say it does cause I HATE what it does to my little girl. The last few days have been pretty busy. Lots of coming and going, and you've been playing with your friends a lot. Which I thought was good, but the effect it has on your sleep is more than I think I can deal with. Last night was the worst. You woke up throwing a fit. I had just gotten up with Tucker, and you were whining and I told you (like I had many times) that if you need me at night you need to call for me nicely and I will come. I told you (like I always do) that I WILL NOT come in when you are screaming and throwing a fit. So, after I told you this I took Tucker in my room to feed him, and not 2 minutes after I started, you started in on a whopper of a fit. There was nothing I could do. I was aleady holding Tucker while he nursed so I couldnt yell for you to mellow out till I was done or it would have startled him. I also didnt think youd hear me through your screams so I did my best to tune it out, but I was pretty sure the neighbors could hear you! Dad went in and tried to calm you down but you lost it even more...screaming that you only wanted me. Dad told you multiple times I was feeding Tucker and you'd have to wait, but that info fell on deaf ears. Once Tucker finished I went to your door and told you I wouldnt come in till you calmed down. You instantly started to try to calm down, but it took a minute. I went in and talked to you...turns out that whole fit was because you had to go potty! There were a couple others like it (but not as loud) last night, and I thought the night would never end. Its so hard to know how to handle these "outbursts" when they are not your fault. I have to hold you accountable for your behavior and let you know that it is NOT ok to scream and yell and throw fits and be mean, (and try to help you cope) but at the same time, I hate to get upset with you about something you cant control. And when its happening, you are clearly out of control. I cant wait till your off these drugs...only 27 more months!

and Fourth: I have been so blessed! When the girls got their back-to-school blessings dad gave you and I one too. In my blessing he blessed me that I would be able to get by on whatever sleep I was able to get. Whether it was 2 hours or 12. I have seen that blessing fulfilled. Over the last 2 weeks your sleeping has gotten more and more difficult. I never know how the night will go, but every morning I wake up ok. I wont say Im doing cartwheels out of bed, but I always have enough energy to accomplish all that I need to during the day. I dont even feel like I need a nap in the afternoon! And anyone who knows me knows Im a woman who not only NEEDS her sleep, I want it. So the fact that I can make it through the day after a night like last night is something to celebrate! I am so grateful to a loving Heavenly Father who builds us up and makes us strong enough too bare the burdens that are placed upon our shoulders. With His help, I know now that I can do anything.

As I write this, you are sound asleep on your bed. Thats something to celebrate too! Another clinic day tomorrow...better rest up.

How can anyone be mad at this little girl!?