Friday, June 26, 2009

Medical Update

After much prayer and a consultation with Seattle (and their opinion that there was no medical advantage to conducting the procedure there rather than Nashville), we've decided to have the procedure done at Vanderbilt Children's in Nashville.

Over the past month AJ's blood counts have continued to drop so that it is now time to move forward with the transplant.

AJ will have to go through a thorough work-up over the next month to make sure he doesn't have any hidden infections (because he will be without an immune system for a few weeks).

The plan is for him to have a new marrow biopsy on July 1st, along with obtaining baselines for all his major organs. On the 14th he'll have another viral screening (to make sure he hasn't been exposed to anything). They will also do an overall health inspection of Austin on the 14th to make sure he doesn't have any infections (since they would end up getting transferred). Following these screens AJ will be on "lock down" at home (with no visitors) as to not expose him to anything before his procedures begin. Assuming nobody is sick, they will admit AJ to the hospital sometime during the week of July 20. He will receive a Hickman line (a central line) then begin chemo the following day. After 5 days of chemo they will do the transplant. The day of the transplant becomes day 0.

The marrow is taken from Austin via a needle and is an out-patient procedure. (Austin is still unaware of this and we will be giving him information as appropriate and in terms for a 5 year old to understand). The marrow gets dripped into AJ via an IV line.

It will take up to 28 days to tell if the transplant worked. About that same time, (when his white blood cells recover to an acceptable level) they will let him out of the hospital, but he will have to stay sheltered and within 20 minutes of the hospital until at least the 100 day mark. If all goes well, he'll be allowed to come back home after 100 days.
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During this time we will be using the website to send updates on his progress. Please take time often to send AJ messages as he looks so forward to receiving them. Please feel free to send him funny stories or even jokes (the cornier the better) and tell him about the things going on in your world - this will be an important part to keeping his spirits up, keeping him in touch with his family and his friends, and alleviating any feelings of isolation.
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As always, please continue to pray for AJ's recovery, for the family's strength, and for the doctors' wisdom.

(Some people have made us aware of problems with posting comments. We think we have corrected those issues. If you some reason you are have difficulty posting please email or call Greg and he will walk you through it.)

15 comments:

Aaron and Erica said...

My heart is so heavy for you guys right now. 100 days in Nashville? Am I reading that correctly? God is good though...he will be with you and will hold you tightly during this time. We'll be praying for you all.

Greg Revera said...

Yes, that is correct, if it all goes to plan, we'll be in Nashville for a little more then 100 days.

Daniel and Tatum said...

These are the things that pull family and friends closer togeather. We love you all. Our prayer is that things just go smoothly and according to plan.
Tatum

irene berkson said...

Hi AJ, I remember when I was a child, about your age... I got really sick. I had to go to the hospital for a long time too. I was there about 50 days. When people came to visit me, they had to wear masks so they wouldn't give me any bad germs. They also had a kid's play room. I don't know if you will be allowed to go right away, but when you are able... ask the hospital if they have a play room. You can meet other kids that are staying at the hospital and hear the stories that they have. It was really interesting to meet other people my age and listen to the experiences that the other children were going through.

Stay as strong as you can. And, I will stay in touch. Trevor (my 8 year old son) is in sleep away camp right now. When he comes home, I will ask him to write you.

Carolyn Parker said...

My thoughts and prayers will be with all of you everyday during this difficult time. Please let me know if I can help you out in any way.

Rhonda said...

AJ we will definitely be thinking of you throughout this journey and the time you spend in Nashville. I'm sure that 100 days seems like an eternity but I pray it passes quickly for you.

Greg and Cindy- please let us know if there is anything we can do for you from here (or there). We would be happy to help out in any way we can!

Jawana said...

Hey AJ! We just got home from your house, and we wanted to tell you and Ryan Austin and Jack that it was GREAT to see all of you! Shayla was so happy that she was able to play with everyone! We are still praying for you daily and we can't wait until you are well enough for us to come visit again! WE LOVE YOU!!

Anna Fennell said...

AJ, I think you are very brave. I am sorry that you are having to go through this but I am glad you will be at Vanderbilt. It is a great hospital and close enough to visit once you are allowed to have visitors. We are getting a Webcam so I will be able to talk to you and see you. I hope you feel better soon.

Anonymous said...

Hi AJ,
Good luck tomorrow sweetheart. I hope everything goes well. Pop Pop and I will be thinking of you. All our love,

Grandma and Pop Pop

Bonnie said...

hay this is price we were on a ball team tougether if you have game boy,ds i have games you can borrow. good luck
price howard

September's Corner said...

We love all of you very much. Our hearts and prayers are with all of you. If you need anything while you are in Nashville, let us know. We can water plants, take the dog if you need us. We are only a stone throw.

Jenny Frith said...

We are praying for you all. Please keep us up to date on everything and let us know if there is anything we can do to help out.

Aunt Denice said...

Had fun at your house today AJ! We are all praying for you and know you are a CHAMP!
Love
Aunt Denice

Anonymous said...

Hi AJ,
This is your grandma "anonymous". I can't figure out how to put my name as a sender, I am old you know. Anyway, from now on I'll just be Grandma Anonymous :)
Love,
Grandma

irene berkson said...

Hi AJ and family. Was thinking about you all and just wanted to give a warm hello. Hope all is going smoothly and that the energy is still high!!!- Irene