Tuesday, February 1, 2011


Clinic today went alot smoother than I anticipated.   I went in expecting a blood transfusion, maybe a platelet transfusion, a couple different chemos, a lumbar puncture and a bone marrow aspirate.  Even just getting a platelet transfusion keeps us there for a least 2 to 4 hours, so getting all of this extra stuff I expected to be there for a lot longer.  We found out, however, that his blood count had gone up so he didnt need a blood transfusion.  We also found out that his platelet count was a whopping 614!!   I almost peed my pants when he told me. (haha ya I just said that)  Im used to seeing 6 on the paper, not 614.  Its a little higher than normal (normal is 400) but his white count had come up a little too so the doctor was saying its probably just his bone marrow responding to one of the chemo drugs he got a couple of weeks ago.  It will be interesting to see what it does when we go next.  His bili stayed the same from having the Vincristine last week, but a couple of his other liver numbers went up a little.  Its not too bad so we arent that worried.  Our plan is to try and get him on the regular road map, so he should be taking Vincristine and Methotrexate together now.  We decided to hold off on the Vincristine this week and give him a dose of Methotrexate to see how this effects his liver.  If he does ok on this then next week they will give them both together.  We are just being extra cautious giving him these new drugs because he reacted to badly to them before.  Also the Oncologist was saying that sometimes if you have a certain make up with different chromosomes than you are predisposed to not tolerating high dose chemo.  Im not sure how to explain it because it was really complicated when he told me, but they are going to test him for it.  The test takes a couple of weeks to get back because they have to send it to Cincinnati because its not common to test kids for this.  If it does come back positive then he wont even consider one of the drugs.  So Im praying that it comes back negative so he can get the drugs he needs.
Instead of doing a bone marrow aspirate today they just did a lumbar puncture to put chemo into his spine.  It went amazingly well.  It literally only took a couple of minutes and Skyler did great waking up.  The first thing he said to the nurse when he woke up was "I did so good last time"  It was funny.  He also didnt want the blow by oxygen by him and said "Do I really have to have that stuff?"  She laughed and took it off.  I was so proud of him because he was really scared but did so good.  He was back to his normal happy self within no time.  We then went back up for the Methotrexate and then we were ready to go home.  We were there for a total of 4 hours.  I was expecting a lot longer so I was happy. We arent scheduled to go back in until next Thursday.  Thats the longest we have gone without going to the hospital.  Im so happy things are going
better for him, he definitely deserves a little break.

                                  Beware: Picture overload

                                 Getting ready to go to clinic


Just being cool


He was able to stand on the scale for the first time today.  Usually I have to hold him.  Go Super Skyler!


Also the first time standing for his height.  Usually they get a height from him laying down.


Im so grateful my mom was able to come today.  She kept Skyler really happy.


He made his own "clinic bag" to bring every week.  Pretty fancy huh?


Waiting to go back for his LP.  Thumbs up dude!


Mommy doesnt like seeing him get the sleepy medicine


Falling asleep on mommy after the sleepy medicine


Leaving him there by himself is always the hardest part for me.


In lala land


Just waking up.  He was a little sleepy but did great!


Our amazing Oncologist showing me that his platelet count was so high.  I thought he was joking at first so he showed me the paper.


Eating some yummy chips.  I was so surprised that he wanted to eat because its still a struggle to get him to eat anything at all.


Getting everything ready so we could leave.  This was the respiratory therapist we had in the PICU so it was nice seeing her under better circumstances.


And last but not least, a lovely dose of poison


Thank you so much for all the many prayers on Skyler's behalf.  I am overwhelmed with gratitude at all of the love and support we have been shown.  Thank you from the bottom of my heart.

10 comments:

Jenna Beth Thomas said...

Crystal, that is so awesome! He looks great and I'm glad you guys had a good day. It's so nice to see doing so well. Go Skyler!

Candhl @ Adventures of a Super Family said...

Skyler is looking better and better each time you post more pictures. I am so happy God is healing his little body. He is a handsome little fellow and his new 'baby hair' growing is so sweet! Crystal I'm continually praying for Skyler and you each day. Thank you for updating as much as you do even though I'm sure your so busy taking care of Skyler.

Mindy said...

I LOVE the picture overload, keep them comin'!!! :) Things sound so great for you guys right now I'm so happy. He looks amazing!! Yay for both of you! :)

suzie said...

Ur little twin (skyler) looks so dang adorable and so much better. I CAN NOT. Say it enough & WILL NOT stop saying how much Skyler just absolutely blows me away with his bravery, courage and strength!!!! WOW.....he is just perfect. You have every right to hold ur head up high.....you have one awesome little boy on ur hands. You two are an dynamic duo and your doing an impecable job as a mother. Skyler has so much trust and faith in you! His eyes say it all with his improvment....his eyes smile right now!
U both r in our prayers.....ALWAYS!!

*SUZIE

Adria said...

What a wonderful update. I am glad to hear he is doing so well.

Adria
Mom to Serenity

Anonymous said...

woot woot!!! ya skyler!! so proud of him!! and so happy that he is "kicking cancer's butt" .

zach's mom

The Beals Family said...

Crystal,
He looks fantastic it is great to see him doing so well! I had to comment on this because I used to work in the Oncology Clinic at Children's Hospital in Birmingham and seeing him eating those doritos was funny! You wouldn't believe how many mom's would tell us their kiddos wanted doritos after their bone marrows! It's good to see his big smile, I read about him everyday!

Briana said...

So great to see him standing! What a strong guy! And YAY for his platelets - I bet that is such a great feeling to see that number! Glad to hear things are going pretty well for him - you guys deserve it!

Erin said...

What a fantastic platelet number!! It's about time the little guy's body cooperated for him. He looks fantastic, and seems like such a happy guy!

Chelsie said...

Yays all around! I love seeing the smiles on both of your faces. You're just so full of joy to be together.

Daph loved doritos after LPs as well. She calls them "skinny chips". I have no idea why.