Thursday, February 10, 2011

Skyler did really well at clinic today.  All of his counts looked great including his bili.  A couple of the liver function numbers went up a little but it wasnt enough to be concerning.  So this meant that they were able to give both of the chemos, Vincristine and Methotrexate, together today.  They also upped the doses on both of them.  Skyler is officially back on the normal road map now.  The phase he is in is called Interim Maintenance.  If his counts are good and his liver function stays ok then they will be upping the dose of Methotrexate every ten days.  I really hope he does well in this phase and that his body tolerates it.  One of the side effects of the Methotrexate is Mucositis.  These are horrible mouth sores that can also go down your entire GI tract and out your rectum.  I pray that he doesnt get this especially now that he is starting to eat a little more.  He is still on feeds, but is off of them eight hours every day.  This weekend we are actually going to try having the feeds on only at night when he is sleeping.  They just want to see if it will make him eat more.  I hope it does because that would be so nice not having him hooked up to that pole most of the day.

On Monday Skyler will go in and get his PEG shot.  This is a shot of chemo into his thigh.  It is a VERY painful one so Im so sad that he has to do this on Valentines Day.  I just hope it doesnt make him miserable for the rest of the day because he really has been looking forward to this holiday especially because its our first one home in awhile.  The last four holidays were spent in the hospital.  At least we are able to go home afterwards for this one, and Im going to try my darnedest to make this one special for him.

Skyler has just been so fun to be around.  He has this light in his eyes that just shines through that makes me so happy.  When I get down I just have to take one look at him and he lifts me back up.  His little laugh is so contagious.  You cant help but smile and laugh when he does.  I am so grateful for him.  There arent words to express my love for this sweet little boy.  Im am blessed to be able to share my life with him.

This is one of the surprises he made for me.  How cute is he?  I love that his heart and exclamation mark are upside down.

Walking outside for the first time


The famous picture by the fish at the hospital

Playing his DS while getting chemo

His poison today was a fancy yellow color

Getting ready to go home finally.  I like to bundle him when we go out into the halls.  In my mind it keeps more germs off of him.  I know I know Im kinda weird like that

Mommy having to do the not so fun chore tonight of changing Skyler's dressing on his central line
He HATES this! 

Sky's favorite part...putting the band aid back on because it means we are done.  He says its his best part.

Stacking cups.  Doesnt he look so good doing that by himself?  He has become really steady with his walker and is even standing my himself sometimes.


Niki said...

WTG Skyler. Hope you have a wonderful valentine's day after the shot. Anyway they can use Emla cream? You're such a loving mom crystal.

Anonymous said...

Sending extra prayers for monday,, your doing great!!!
Hope you have a great weekend!!

zachs mom

lea said...

Yeah for walking and standing!! Go Skyler! McKall hated the PEG, but I think it was mostly the anticipation cause she was always fine when it was over. We put EMLA on, and that helps but only a little. GOOD LUCK, and have an awesome Valentines have a super cute valentine!!

Krin Thorpe said...

He's looking really good! I love the muscle picture of him holding the walker! His belly looks much less distended and his skin color looks great and i see the spark in his eyes! Awesome! He's getting back on track and I'm so happy to see it. Thanks for the updates, I love reading them and being inspired by your little miracle.
-Krin (and Mathias)

Padilla's said...

That cream takes like 30-45 minutes to work. You might want to ask them if they can put some lidocaine in with the shot though. It still hurts being poked but once the medication and lido are injected he won't feel a thing. We do this for children at our hospital. He looks great and I am so happy to hear is liver function tests came back good! Such a fighter way to go Skyler!

Amy said...

I'm so sorry i wasn't able to talk with you at was crazy that day! We will probably see you again sometime:) We, too, use to go once a week and then some...and It feels weird to only have to go every 3-6 weeks now.
It's so wonderful to see him doing well:) We keep you and Skyler in our prayers...and are so grateful that he's back on the regular road map!

Briana said...

he is looking so great! glad to hear that you guys are back on the normal road map - quite a milestone! we will be praying that his little body handles the methotrexate well. we are just now in the hospital starting that new ramped up interim maintenance phase now. anymore talk of that for skyler? are they going to just wait and see how he does boosting the levels and then maybe he'll go back and repeat if he tolerates it well? or are they waiting for the results of that test?

Chelsie said...

So glad he's doing so well! I second what Lea said, Daph was on study and got something like 6-7 doses of PEG. She hated it while it was happening. but it only lasts as long as a shot. Then she was fine. A little pissed about it, but back to playing.

I agree with you. It is adorable that his heart and exclamation are upside down. He is so sweet and thoughtful!

cjmom said...

Crystal, ask your doctor if you can give Skyler L-Lysine. It has helped our family a lot with mouth sores. If it wouldn't interfere with the meds, then maybe you could try and see if it would help? It is an amino acid that the body needs, but it doesn't make itself. Skyler is looking so great. Hope Valentine's Day goes well. Make heart shaped pancakes in the morning before he goes is, so if it isn't a good day, he will still get to celebrate???? (or crepes with whipped cream and cherries, or strawberries ;)

Amanda said...

He is so sweet! I am so glad his liver is looking good! GO SKYLER!

Jodie said...

I can't believe how GREAT he looks! Wow! I cannot tell you how HAPPY I am for you! I am so glad that you are both doing so much better! We will keep praying for him!

Chelsea said...

YAY for being back on the road map! This kid really is Super Skyler! I LOVE his note to you...adorable!!! Love you both!