I am so incredibly sad today :(

AllAboutTheBenjamin · June 2010

I made a post last week about how I was excited that I got my bone marrow donation ID card in the mail - and explained that I registered in honor of my 5 year old cousin with CGD (an immune disorder).

I also talked a little about another little boy that my cousin met in the hospital through a CGD network who needed a bone marrow transplant. He recently got a second BMT because his first one didn't work, and his second one finally engrafted over a month after his surgery - and he is HEALED of CGD! It's such a miracle. But he never fully recovered from the surgery and is now in respiratory failure. I read the family's latest care page update and they are basically keeping him comfortable and waiting for him to pass

I've never even met this little boy and my heart is breaking for him and his family. They've been through so much. And it's just not fair

526SadieSadie · June 2010

I'm so so sorry to hear this. Children shouldn't get cancer, there should be a law. It's truly awful.

PetraStonegirl · June 2010

That's very sad. No parent should ever have to outlive their child. *hug*

MarriedInAFever · June 2010

Really, really sorry to hear this, AATB. I mentioned in your original post I volunteered with young cancer patients. It's so terribly tragic. But those children always amazed me. They can be so mature and so strong about their situations. Sometimes you can only hope that they find peace and the children don't suffer. So sad. Hugs to you.

AllAboutTheBenjamin · June 2010

Fever I don't know how you do it but I think that's so incredible of you. Seriously awesome.

I've been praying for this little boy and his family for so long and everyone has always been so optimistic - it's incredibly hard to see them basically lose hope. I hope the little boy can go peacefully, too.

It makes me so scared for my cousin, too. He's only had a couple serious infections from this and many patients with CGD live relatively normal lives on their plethora of meds - but all it takes is for one serious illness to really wreak havoc on their bodies and they can get into a lot of trouble. It just stresses me out.

Steph0871 · June 2010

So sorry. I could never work with sick children, and I seriously applaud those of you who do.

If it's any help, your post the other day made me sign up for the marrow registry!

LesPaul · June 2010

This is so sad. I'm sorry.

Check out this website: Be a Hero, Become a Donor http://www.bahbad.org

The Mom in the story (and founder of the organization) is a high school classmate of mine. Her 9-year old son also died from complications after a metabolic disorder and successful bone marrow transplant. The story continues, though - his sister became a living kidney donor to a child they met at the Ronald McDonald house while he was undergoing treatment.

AllAboutTheBenjamin · June 2010

That is so cool steph

I was so excited and pleased to see a bunch of girls on here sign up. I continue to appreciate that - it's such a big decision and something that is so selfless and awesome of a person to do.

AllAboutTheBenjamin · June 2010

Thanks for sharing that link LesPaul!

MarriedInAFever · June 2010

Steph's right. You made a serious snowball effect. I'm mailing back my kit and FI's today. I also mentioned it on FB and a couple other people joined! Sometimes you just have to focus on improving the situation. You can make a serious difference. Focus on what you can do to help. It should really change your perceptive on things. It's ok to be sad now though because it does truly suck.

[Deleted User] · June 2010

I'm sorry to hear about this. I can't imagine what a parent must go through when experiencing something like that. I'm not usually a very empathetic person, but hearing stories about children in pain or sick kids really gets to me.

Blueyed228 · June 2010

Im really sorry.

kpwedkk · June 2010

I'm really sorry to hear, but thinking positively, he'll be in a better place, where there is bubbles in the air, smiles, and no pain

snoangel79 · June 2010

I'm really sorry to hear that! I actually work at Dana Farber Cancer Institute as a Donor Coordinator for the Be the Match registry also know as the National Marrow Donor Registry and that is so wonderful of you to sign up to be part of the registry! You are doing a great thing that unfortunately many people don't know about or realize that most of the time that donating is similar to donating platelets. I've worked for three years here and met many families through bone marrow drives and patients and their matching siblings. It is truly amazing when someone who is not related gives such a wonderful gift!

Sometimes the patients do not make it but you have given them hope (the stats are usually less than 15% chance of survival without transplant, 25-50% with). As someone who has also gone through cancer treatments when I was 23 (I actually only have one match on the registry). It's pretty scary knowing if I ever needed a donor transplant I would have only one person out there that would possibly be there besides possibly my sister, who I am not sure if she is even a match!

It's a really scary thing to see especially when there is no match from the sibs, or on the donor registry, we then look at cord blood, and sometimes there is no match there. I can't tell you how many times I've seen patients die because there was no one that matched! Awesome that you are getting the word out!!

AllAboutTheBenjamin · June 2010

I just found out that Kobe (that was his name) passed away this morning.

Ugh - I am just crushed

I am so incredibly sad today :(

Re: I am so incredibly sad today :(

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