Updates and the CureSearch walk!!

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???

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...

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...

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

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

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

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!