Tuesday, April 29, 2008

Ready for tomorrow?

Well not really. I'm so worried that something might go wrong. The docs told me that there is more risk to this one (just will infections I think.) Grrr. Can't they just stop telling me that. Don't they know that we already know that there are risks. He did say that the outcome totally outweighs the risks though. At least he's optimistic! :o) I'm not ready for radiation. I still feel like I don't know much about it but when it comes down to asking questions I don't have any. I'm worried that he'll stop breathing again and that it could become a problem. Anyways.... Here is the week and half ahead.
Wed. April 30th Day -7
6:00am- Admit
8:30am- TBI (total body irradiation) We will take a shuttle from Primary's to Huntsman each time he has TBI. They said it should only take an hour.
3:30pm- TBI
Thurs. May 1st Day -6
7:30am- TBI
3:30pm- TBI
Friday. May 2nd Day -5
7:30am- TBI
3:30pm- TBI
Saturday May 3rd Day -4
Chemotherapy. I can't remember what it is called but it starts with an M and goes for 1/2 hour
Sunday May 4th Day-3
Chemotherapy
Monday May 5th Day -2
Chemotherapy
Tuesday May 6th Day -1
Day of rest
Wednesday May 7th Day 0
Stem cell transplant
Thursday May 8th- Kelsi's cath lab procedure.

I packed two big suitcases full of Cohen's clothes, toys, blankets, books, and movies. The expected stay is 3-4 weeks again. I'll post tomorrow.
Thank you so much for all of your thoughts and prayers.

Tuesday, April 22, 2008

Total body irradiation

Cohen had his radiation simulation yesterday and we met with the radiation Doctors on Friday. They sedated him and took measurements. He needs to be still during radiation so they'll have to sedate him every time. He kept fighting the medicine that they gave him so they had to give him more and more. Finally he was out and stopped breathing... They were able to pump air back into his lungs and get him to breath on his own again and get the procedure done. He'll have radiation twice a day on the 30th, 1st, and 2nd. And then once a day for 4 days 4 weeks after transplant. He's going to be sedated a lot. It seems like he fights the sedation more each time he has it. :o( I'm so worried that something could go wrong. Also the thought of radiation scares me. I don't know why other than its new and he's never been through it before. I don't know; we'll see. He goes in on April 30th. 3 days of irradiation twice a day, 3 days of chemotherapy, day of rest, then his stem cell transplant.

Wednesday, April 16, 2008

Cohen is just amazing

So far so good. He has been eating a little and staying healthy. The BMT doctors and nurses are so impressed that he is even eating and playing. They said after the first transplant the kiddos usually just lay around the house. Cohen has been up dancing, acting crazy, and playing with his sister. She really does help him stay normal. They have so much fun together and she encourages him to be crazy. As for eating they said that it takes 6 months after treatment for other neuroblastoma kiddos to even start because of where the tumor is located and all of the stuff they go through. Most of them have the NG tube in. Cohen is soooooooo amazing. He has defied most of their expectations. No mouth sores, eats ok, maintains weight, plays around, shorter stays, minimal nausea, only one extra hospital stay. He is so cooperative with the nurses and his meds. He is so sweet and fun even though he is going through so much. He is definitely my little hero. :o) Hopefully everything continues to go well. Unless he is chosen for a study or gets sick this next stay should be his last. Crazy huh? The 2 weeks he has radiation will be outpatient. His last chemotherapy will be on May 6th. Wow! What an experience this has been. I can't believe the treatment is almost over (even though we still have 2 1/2 months to go.) It has gone by so fast but it seems like he's had this for a long time.
Thank you so much for all of your prayers. They mean so much to us. They've really helped along the way.

Friday, April 11, 2008

Happy Birthday Cohen!!!

Today is Cohen's 2nd birthday!!!

Wednesday, April 9, 2008

Going Home!

We are so excited that Cohen gets to come home today! He's been here for 20 days. A few days shy of the expected 3 or 4 weeks. His anc is 1500 this morning and he is still negative for infections/viruses. I am so pleased with how well he did. The only virus he got was RSV and it didn't get that bad. They said for sure he'd get mouth sores this time but he didn't. His appetite isn't fully back but enough where he'll only need TPN & Lipids for 12 hours a day at home. He comes back on May 2nd for the next transplant. They did schedule his day of rest on the day Kelsi will have her procedure.
Thank you for all of your thoughts and prayers.

Sunday, April 6, 2008

Stem Cells have engrafted

Cohen's counts are starting to come back up!!! His white blood cell count started coming up on Friday (it's at 300 today.) His ANC started coming up today (it's 15.) His ANC needs to be above 500 for 2 days before he can go home. He also needs to not have any infections or viruses. So guess what!!! He is negative for RSV today!!! The ribaviren really did the job. He did so well with it. He kept the mask on his face the whole time; even when he was sleeping. (He had to have it 3 times a day for 5 days.) He is doing really good in general. Surprisingly he's fine being up here for so long. Anyways hopefully he will be sent home on Thursday so he can spend his 2nd birthday at home (Friday April 11th. I can't believe he's almost 2.)
Thank you so much for keeping my two cute kids in your prayers!

Thursday, April 3, 2008

May 8th

Kelsi's cath lab procedure is scheduled for May 8th. I told her last night and she just pouted and said 'I don't want them to cut my leg.' It's so cute how kids think the little things like shots or iv's are worse than the actual thing they are having done. Cohen will be up here the same time receiving radiation, chemo, or his 2nd stem cell transplant. It would be ideal if her procedure was done on Cohen's rest day (day before transplant.) Hopefully BMT will schedule Cohen's stuff around Kelsi.

Wednesday, April 2, 2008

Kelsi's cath lab procedure

Dr. Cowley called and said that they are definitely going to close the hole in Kelsi's fontan. There is no set date yet but it will be in 6-8 weeks. They will go through her groin with a catheter and close the hole with a balloon. She will be able to go home after the procedure as long as everything is ok. Here is a picture of the fontan (actual size they put in Kelsi) and then a picture of where the fontan in her heart (labeled RA.) The hole that is in between the artificial wall and the heart is the hole that they will close.

 
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