Beachlily - our friend's son with ALD (update)

tinam61June 6, 2012

And anyone else interested:

I was reading through Anele's thread and saw where Beachlilly had asked me to update on our friend's son.

Blake had his bone marrow transplant and did very well. Too well, in fact. 20+ days after the transplant they discovered engraftment had not taken place. They did not make him sick enough and his own system killed off the new cells. Blake has enjoyed a few weeks of recovery, gained a little weight, and moved into the Ronald McDonald House (they are at Mayo) with his parents. Monday he was admitted back to the children's hospital there as an inpatient and he started chemo yesterday. He'll have 5 days of chemo, one day of full body radiation and then a second bone marrow transplant. This transplant is from a living donor with a full 8 out of 8 point match. The first transplant was from umbilical cord donation. Mayo apparently has a huge umbilical cord bank. We are hoping that this time it works. He's on a different chemo and he will probably get much "sicker" and feel much worst this time around, but they need to "kill" his own immune system as much as possible. If you are so inclined, please pray or send your good thoughts for Blake that this works. He has ALD which is similar to ALS. He does not have alot of symptoms yet, but it is terminal unless stopped. He would probably not live past his 20's. If successful, the transplant does not repair any (nerve) damage already done, but stops the disease. Blake is 14 years old with so much ahead of him. He is also an only child, so you can imagine how his parents are feeling. This is an excellent program and they are having very good results, so we are very, very hopeful for Blake.

Thanks Beachlily for asking about him!!

tina

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cooperbailey

my thoughts and prayers are with Blake.

    Bookmark   June 6, 2012 at 10:19AM
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olliesmom

tina, I must have missed Blake's illness also. I will keep him in my prayers also and will light a candle for him as well. Praying for Blake and his family too.

    Bookmark   June 6, 2012 at 10:41AM
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lukkiirish

OMG, I too missed the original post. I can't imagine the angst this family is experiencing but I'm so glad to hear his prognosis is positive. I too will keep him in my prayers.

    Bookmark   June 6, 2012 at 11:04AM
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tinam61

Thank you guys!!!

    Bookmark   June 6, 2012 at 1:32PM
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mitchdesj

I definitely wish him well, a hard road with the chemo, keep us posted .

    Bookmark   June 6, 2012 at 8:55PM
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yayagal

I'll be praying too and I'm putting his name in a petition list that has over one millions prayer warriers praying daily. God bless.

    Bookmark   June 6, 2012 at 11:14PM
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tinam61

Thank you Mitch and Yaya! Thank you Yaya for putting Blake on the list. He is on many church prayer lists across the country. His family strongly believe that is what has helped them thus far.

Mitch you are right, they need to kill off his immune system, and last time he didn't get that sick. I'm sure this time will be much worse, but hopefully for a short period and hopefully the outcome of the transplant will be well worth it! I know it has to be hard for his parents to watch him go through this.

tina

    Bookmark   June 7, 2012 at 8:47AM
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texanjana

Praying for Blake.

    Bookmark   June 7, 2012 at 11:20AM
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anele_gw

Blake is definitely in my prayers. I am so sorry it did not work the first time, but I am guessing it gives them a very good starting point and will be able to control the process well. I am so glad he is getting the excellent care that he deserves.

    Bookmark   June 7, 2012 at 4:44PM
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cyn427 (zone 7)

Sending all good energy and good wishes and hoping for the best possible outcome!

    Bookmark   June 7, 2012 at 8:30PM
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tinam61

Thank you!!!

    Bookmark   June 7, 2012 at 9:44PM
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daisychain01

tina, my 13 year old daughter's good friend is battling a rare form of cancer right now and is away having some major surgery. It is heartbreaking when kids get sick. I will add Blake to my prayers.

    Bookmark   June 10, 2012 at 8:56AM
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beachlily z9a

Good evening, Tina!

I've been out of town. Oh, Tina, I wish the very best for Blake. No child should have to go through that! Mayo is great and they tried. Please let us know what's happening. Blake won't like what he's going through, but if it helps the graft .... that's what has to happen.

You take care of yourself, Mom. You gotta be there for him. I've been there for my husband, too.

    Bookmark   June 11, 2012 at 6:59PM
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beachlily z9a

Oh, I'm sorry. Not your son. He still needs your support!

    Bookmark   June 11, 2012 at 7:00PM
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roarah

I just want to add that even more than prayers this little boy needs bone marrow and everyone that is healthy and under 65 can get a simple blood test and be on the donor list. I had the good fortune to be a marrow donor seven years ago for a child I did not know and let me tell you I felt like I won the lottery when I got the call. The procedure was not that bad incomparision to what these brave little fighters go thru with their illnesses. Please, if you are not already on the national bone marrow registry please do so. Along with prays and positive thoughts, bone marrow is what this little one really needs. And what an honor it would be if one of us could be a match that might save a soul.

    Bookmark   June 11, 2012 at 8:19PM
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tinam61

Thanks for the new replies. Update on Blake. Today is his last day of chemo. Tomorrow he has total body irradiation and Wednesday IS THE BIG DAY!!! 2nd bone marrow transplant. Live donor - 8 out of 8 points matching. They have a large enough dose so that if they see the need, in a few weeks, they can "boost" the transplant. They have been giving him meds to help prevent host vs. graft disease (I hope I have that right). He is doing well, not feeling bad yet, but a little sick to his tummy. He has had a wonderful attitude through this. His best friend from here in TN was there last week to visit and that really was good medicine. Blake is ready to come back to TN, however, best case scenerio, would be that he come home late September.

I will let you all know how things are progressing. Please send out lots of prayers and good thoughts on Wednesday!! Thank you so much.

tina

    Bookmark   June 11, 2012 at 9:23PM
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