Thursday, June 12, 2008

Focal Radiation and then maybe a study?

The kids are doing great! Kelsi's oxygen saturation has been pretty consistent at 96. Cohen is off all TPN, lipids, and IV fluids because he is eating and drinking enough! Like I said before it usually takes 6 months after the 2nd transplant for other kids with neuroblastoma to start eating. He's eating normal after 1 month!!! I'm so proud of him. He had his radiation simulation yesterday and they mapped out where they will do the radiation. They are only going to do it on the spot where his tumor was since the tumor never metastasized. He has permanent marker markings on the right side of his belly. They are covered with the tagederm (clear band aid.) He has to leave them on until next Thursday or they may have to tattoo him. He'd have four really small dots forever so hopefully he'll be good at leaving his tummy alone! He starts radiation on Monday and will have it once a day through Thursday.
He then will have his scans the first and second weeks in July. If everything looks good he'll be entered in a study where he'll be randomly chosen to do it. The study is pretty neat they'll infuse monoclonal antibodies into him. These are special molecules that seek out and attach to cancerous cells. Sometimes, these antibodies can stimulate the child’s immune system to fight the cancer more effectively. He'll also receive cis-retinoic acid (aka Isotretinoin or Accutane.) This helps the cells mature. The study goes for 5 months and he'll be in the hospital 1 week every 4 weeks. If he doesn't get picked for the study he will just receive the cis-retonic acid for 6 months and not have to stay in the hospital. We'll know which one he'll be chosen for by the 3rd week in July.
Thank you so much for keeping my two cute kids in your prayers! Kelsi and Cohen have done so well thanks to all of you! Chris and I couldn't do it without your support. :o)


Brad & Britt said...

I was wondering how you guys were doing! I am curious to hear if you guys get picked into that study is intense, but pretty amazing! I miss not seeing you 4421 will forever be yours in my mind! Sounds like Kels, is doing great with her O2 sats!

The Martin's said...

I found your blog through our cousin Katie's blog. I wish you the best with your sweet children. We have a dear friend who is going through similar heart problems with their wee one too. Thanks for sharing your life! Makes me grateful for the blessings we have!


I am glad to hear things are going well with you two!! Well 4 :-) Good luck with radiation hope it all goes well. Keep us all updated on if he gets to do the study or not!!

carolyn q said...

Just checking in on how things are going for your amazing little family.
I am glad to read that Cohen is back to eating normal. The study sounds like it would be very valuable to participate in for Cohen.
Let me know when you are free some weekend so we can work out a time to get that voucher for Park City Retreat.
I hope by now you have moved and it went well.

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