Friday, October 14, 2011

October Clinic

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 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 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 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!

Wednesday, October 5, 2011

An old post, and a new one...

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 said, "No, just really sleepy." I'd say that was an 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 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, 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 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 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 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'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.