Monday, June 30, 2008


Cohen will have scans and others tests to see if the cancer is gone and if he will be entered into the study. Here is our schedule:
Tuesday July 1st- Clinic visit-blood for study, Bone marrow aspirate/biopsy
Wednesday July 2nd- MIBG Scan and maybe an Echo (I don't think he'll have to have another one.)
Monday July 7th- CT Scan
Thursday July 10th- Clinic visit- blood for study

I think we will find out if he is chosen for the study on Friday July 11th and start the following Monday.

Tuesday, June 24, 2008

He's home

Cohen was able to come home on Sunday. He is doing much better but they're not sure what's wrong. However the cardiologists aren't concerned. The BMT doctors said that every few years they get a kid with neuroblastoma whose heart rate does this with no explanation (but it happens during the 2nd transplant) and their heart rate went back to normal. So.... We will just watch him. Please keep him in your prayers and hope that nothing is wrong and/or that it doesn't get worse. Thanks!

Saturday, June 21, 2008

Radiation is over and he's back in the hospital...

He is done with radiation and he did really well through it. But... His heart rate started slowly dropping on Wednesday. It was in the 80's, then Thursday it was in the high 60's so I called and the docs said it could be because he's may be dehydrated. So we gave him iv fluids overnight and checked him again the next morning. His heart rate was 54 bpm. Not fun when I've already experienced low heart rate with Kelsi and now she has a pacemaker. So of course they wanted him to come in. They immediately took blood cultures and hooked him up to fluids. He went down to cardiology for an echo and ekg. Everything looked fine. His heart rate even went back up to the 80's. The cardiologist nurse practioner (the one that checks Kelsi's pacemaker!) came and checked him out. She said everything seemed to be fine but they wanted to hook him up to the 24 hr ekg machine. They admitted him so they could monitor him for a bit and started him on antibiotics just in case. His heart rate is irregular. It is anywhere from the high 60's to 110. His blood pressure is a little lower than normal but they aren't concerned about that because other kids with neuroblastoma experience the same thing. His preliminary cultures came back negative. So we will just wait and see. I don't think I ever mentioned that they have heard a slight murmur every since he was first diagnosed but every test they've done on his heart has come back normal.
(He kept the clear bandages on all week! No tattoo's for my little man.)

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)

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