Yesterday I emailed the doctor at U of M who is doing the transplants for EB kids.
Here's what I know:
- They are opening up the transplants to Junctional kids. Only seven have been done so far, and those just on RDEB patients.
- Bone marrow transplants are risky, especially without an exact (sibling) match
- They recommend that, since Jonah is doing so well, we hold off for now, although they've offered to evaluate him at any time.
There is so much to think about, and I've looked at the sites of all the transplant kids that I could find. I'll tell you - these transplants are no joke. There is lots of risk involved, and right now, for us, it's just not worth the risk. And by risk I mean that he could die. They would do chemo and I think radiation as well to kill off his immune system. THEN, he would get the transplant, and from what I've seen on these other kids' sites, it gets worse before it gets better... high fevers, worse sores than ever before (temporary but excruciating nonetheless), painful sores in the mouth, isolation for a long time.
Matt and I will be pursuing all the preliminary tests etc that we need. HLA typing (to determine who might be a good match... The doctor said that it's unlikely we'll find a good match among our relatives), genetic testing to determine where, exactly, his deficiency lies, and any other tests they require. If he gets in a more urgent situation or it becomes less risky, we want to have our ducks in a row.
But we may NEVER choose this option for Jonah. That will depend on how well he continues to do. If it becomes this option or death or this option or a much more severe state than he's in now, we may choose this. But right now, we just don't consider the risk worth it... especially since NONE have been done successfully without sibling donors (I don't think, at least). If we thought he had Herlitz, it would be a totally different situation.
If you'd like to follow a couple of kids with me, you can follow:
Samantha - seven days post-transplant, having a rough time right now
Hannah - about 140 days post-transplant, doing well
Keric - about 260 days post-transplant, doing well
*For Samantha and Keric, you'll have to register with Caring Bridge... it only takes a minute.*
Please be in prayer for these kids, as well as kids in a more severe and urgent situation than Jonah's and their parents who are having to struggle with this decision NOW. It's a big one and a hard one, and I can't imagine having to make it. Unfortunately for a "cure" to become a "cure," someone has to go first. These families are so brave and strong for choosing this. I know it is so hard. But Faith in God has been a recurring theme I've found with these BMT kids and other EB kids in general. For the most part, they're still praising in the storm. I'm amazed at their faith and strength.
Please pray.
Friday, September 4, 2009
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16 comments:
WOO HOO! I am the first to post! You know, no one ever tells you when you are thinking about having children or when you are pregnant that you will have to make some pretty tough decisions about what is right for your child. In the near future I will be facing a similar dilemma only this one won't mean life or death....but there could be some serious consequences if I choose the wrong thing...so I am patiently listening to what God is telling me...and doing some heavy praying about it!
I understand you not wanting to put Jonah through the unknown. Makes perfect sense to me. He is doing so well.....and so darn cute!
Hugs love and prayers!
You have my prayers each day! God lays you on my heart every morning. I personally have been through 'regular' chemo and it's devastating to the body let alone a transplant with high-dose, immune-killing chemo. You are so brave to research this! Have a great weekend!
I follow every update and pray for Jonah every day!
I think you're doing the best thing right now by holding off but staying open and researching and preparing the paperwork and details in case. You're right that it's not worth risking death when he's so healthy and doing so well right now. It is sometimes hard to see the excruciatingly slow improvements from one day to the next, when there are good days and heartbreakingly bad ones, BUT I see the pictures of Jonah months ago compared to the pictures of him today and it is so noticeable the difference! God is going to use Jonah for something great! I just know it! He's so adorable and he could not have been born to parents more loving and patient. Hang in there! You're a great mom and you're doing great. Just keep praying and asking; God will lead you!
Decisions like that are always hard to make. Praying for you, as his parents. And for his healing. God bless.
Our 18 month is +42 days post transplant and besides a blood infection he is en grafted and doing good.
Yes it is hard seeing your baby go through Chemo and transplant but this was our only choice as he had a rare Immunity disease and would of died from it.God has graciously been walking and sitting with us the past 14months and We have a long long road ahead of us but Anthony is doing so well and keep amazes his doctors and staff here at childrens.
Anthony didn't have to have the radiation but did do 7 straight days of harsh very harsh chemotherapy.
I will pray for you and Matt as you make your decision for Jonah.I do know its a difficult decision.
God Bless
Rhonda
I think you guys are doing the right thing right now. I would want to spend all the time I could with my child and if they were doing good why, make it worse. I know its a hard decision, but you can only know what is best for him so do what you believe at the moment. We can only live in the moment we can't think about what could happen tommorrow!!
Definitely stay in contact with the U of M, they are a nop-notch research school. I'm glad you guys are at least looking into these options now so you'll know exactly where things lie if you need to pursue it someday. We're all still praying for a miracle.
Thanks for sharing the other sites - We have friends who have two EB babies who are with Jesus and so it's near and dear to our hearts. God bless your Jonah ~ he's a special little boy!
Patrice, you guys are facing some pretty tough decisions. but I know you will seek the Fathers face in all you do and he will lead you in the direction that is best for your family. I am so proud of who you both are, and baby Jonah is a pretty lucky little guy to have you both as parents!
Praying for healing
Love Gina
i went to the sites of the children. wow, strong kids. strong families. i have added them to my prayer book and i will keep them in our prayers.
you and matt are making well informed decisions about jonah and his care. getting all your ducks in a row, while in the immediate giving all you can day-to-day. he is doing so well because of you and your love and care for him. jonah is so adorable. his smile says it all--he is one happy little man.
blessings, mari
I think as a parent you have to "go with your gut". You know your child best, and what is best for him. Praying for you.
Keeping you all in prayer for your miracle. One decision at a time. Getting ducks in a row is a good one. Thanks for sharing Patrice. God bless your sweet family. Jennifer in Southeast, NC
I have breifly glanced at Keric's site and I do have a password but it's not recognizing it for some reason. Could you please tell that mother, if you have contact with her, that it absurd for someone to tell her that he can't attend functions at school if he is placed on homebound. Someone is giving them a hard time. I mean first of all, what kind of person in education would begrudge a child a feild trip or class party JUST because he was on homebound. And second of all, it's just not legally true. UGHHHH!! I'm on a soap box so I'll get off. But I'm a special ed teacher in a public school and that's just not true. Also, she can request homebound for the times he is at home and then regular school for the times he can go. All they have to do is put it in his IEP that that is the agreement of the IEP team. AND here's another thing, if he's out for medical reasons whatever they put in that IEP trumps school policy. They don't have to count him out when he's out if it says so in his IEP. Ok oK, I'll stop now!!!
My heart breaks for your sweet baby boy and all that you have to go through. Jonah is beautiful and his face just shines. :o) Decisions are always tough, especially when all you want is to desperately do the right thing for your child. You guys have done so well with Jonah and I pray that God continues to guide you to make the best choices for your baby.
Certainly no expert on EB but it sounds like you are doing the right thing. He is in no immediate danger, his blisters look pretty superficial and he doesn't seem to have any major bullae that could be an infection risk, and you don't know yet if he will grow out of the EB as he gets older. So yeah...waiting seems like a good idea, give him a chance to get bigger and stronger before you think about putting him through chemo and transplant, and in those few years they will have done more transplants on other kids and you will have a better idea of the success rate.
Have you looked into colloidal silver? It has amazing healing and disinfectant properties, I use it for minor wounds and they heal super fast. You can also drink it which could help any blisters in his throat, it also improves stomach problems. I love it, maybe look into it for Jonut?
That's a tough decision to make- keep in mind that medicine is making huge leaps all the time. I had a bone marrow transplant 11 years ago (for something unrelated to EB) and am doing well. But there are definetely risks. We're praying that you all will be able to make the right decision in the right time.
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