View Full Version : Need Pixie dust for my nephew

03-12-2007, 07:27 PM
I just found out that my almost 4 year old nephew is out of remission. He has a form of anemia called Diamond BlackFan anemia. This means his bone marrow doesn't produce red bloods cells on their own. He was diagnosed at 9 months and was transfusion dependent for over 1 year. It's been about 16 months since he's had a transfusion and now he has to start all over again. Please send pixie dust and pray for another spontaneous remission for him. And even better, a cure for this disease.

03-12-2007, 08:04 PM
:pixie: :pixie: :pixie:

For your brave nephew!

hoop de do
03-12-2007, 08:13 PM
Powerful PA Pixie Dust and prayers coming your way. :tink: :pixie: :tink: :pixie:

03-12-2007, 08:18 PM
Pixie dust and prayers coming your way from New Jersey!:pixie: :pixie: :pixie:

03-12-2007, 08:25 PM
Pixie Dust coming your way. :pixie: :pixie:

Is he close to any of the Boston Hospitals? (I see you are in Mass.) I have family that work there and I know there has been a lot of work done with blood diseases and such. (One family member is in a research department there).

I also have a friend that had plasma cancer which is very rare. They harvested her stem cells after some injections to push her levels up. Then clean her out and restarted her system over again. This was 4 years ago and she's still doing very well. Maybe ask about whether his own stem cells could help (her's was done at Cedar Sinai).

03-12-2007, 08:49 PM
Stem cell research will definitely be able to help if it gets to that point. Right now, they'll try transfusions first, and possibly steroids. They only do bone marrow transplants if the other treatments don't work. I'm really hoping after he transfuses, he'll pop back into remission again. He did it once, so maybe he can do it again really quickly.
He actually goes to UMASS Med Center. He's gone to Long Island to have a spinal done. But you are right, we have some of the best hospitals in the world.

03-12-2007, 09:38 PM
:pixie: :pixie: :pixie: :pixie: :pixie: for that sweet nephew of yours.

03-12-2007, 09:46 PM
I'm so sorry to hear that.....:pixie: :pixie: for your nephew. I hope he gets a quick remission.

03-12-2007, 10:06 PM
:pixie: :pixie: :pixie: :pixie:

03-12-2007, 11:01 PM
More :pixie: on the way!

03-12-2007, 11:36 PM
More :pixie: for successful treatment and that he goes back into remission! And some extra :pixie: for the entire family!

03-13-2007, 01:09 AM
more pixie dust on the way!

:pixie: :pixie:

03-13-2007, 01:58 AM
:pixie: :pixie: :pixie: and prayers for your nephew and all of his family.
More :pixie: :pixie: :pixie: for the people working on the cure he needs.

Jeri Lynn
03-13-2007, 06:07 AM
Ton's of pixie dust being sent for the little guy. Hopefully he will go back into remission soon.

03-13-2007, 07:45 AM
Much pixie dust :pixie: :pixie: :pixie: and prayers for your little nephew, and your family!

03-13-2007, 08:57 AM
pixie dust on the way..please keep us updated!!

:pixie: :pixie: :pixie: :pixie:

03-13-2007, 09:14 AM
I'm so sorry.:( Your nephew, you and the whole family will be in my thoughts and prayers.

03-13-2007, 09:21 AM
More Pixie dust on it's way for your nephew:pixie: :pixie: :pixie:

03-13-2007, 10:00 AM
:pixie: :pixie: :pixie: :pixie: :pixie: for your nephew.

03-13-2007, 12:07 PM
Lots more :pixie: :pixie: on the way for your poor little nephew and your whole family. Sickness is never fun, but it is so much harder when the sick one is just a little guy. Hope he is back in remission soon and back to the all important business of being a four year old!!

03-13-2007, 12:12 PM
Sending loads of :pixie: :pixie: :pixie: :pixie:
for his remission and hope they find a cure soon.

03-13-2007, 06:56 PM
I would just like to thank everyone for all the well wishes for my little boy. We had really hoped he would've stayed in remission for awhile longer but at least he's been in it. So the good news is it's likely that he will be able to go into remission again. My sister did get something wrong though he didn't have a spinal it was that they took a sample of his bone marrow when we went for our 2nd opinion so they could make sure of his diagnosis. He has a great doctor, his doctor did his residencey under one of the doctors that discovered this disease. We go in tomorrow morning for his transfusion and I'm worried how he's going to do since he hasn't had to have an IV for so long. Thank you again everyone I believe that prayers do wonders that medicine can't explain.

03-13-2007, 07:02 PM
Some more :pixie: for your son and nephew!

bucky at disney
03-14-2007, 01:13 PM
:pixie: :pixie: :pixie:

03-14-2007, 01:41 PM
I'm still hoping that he's still in remission and this is just a bout with a bug or something!

I wholeheartly believe that he went into remission because there were so many people praying for him.

He can always call on his cousin to come "beat up the bad blood"... :cool:

The Bookseller
03-14-2007, 02:24 PM
Let's hope the best for the little guy! Here's some :pixie: :pixie: :pixie: :pixie: :pixie: for the hope of a cure and a solid recovery.

03-14-2007, 06:25 PM
Sending prayers and :pixie: :pixie: :pixie: :pixie: to your nephew and family.

03-14-2007, 08:46 PM
Well, William had his transfusion today and did great! The hardest part for my sister and the doctor were them trying to get Tylenol into him to prevent a fever.
The whole procedure takes about 4-5 hours. He goes back in 3 weeks and they'll check him again to see if he's maintaining his levels. Keep the prayers and pixie dust coming!

And my BIL talked to someone at the DBA foundation and there's going to be an announcement that Dr Gazda and her team have identified another factor in this disease. That's 2 breakthroughs in less than a year! Keep up the good work!!!

05-09-2007, 10:40 AM
I just noticed that no one has updated on the nephew.
He had one transfusion in March and has NOT needed another one !!!!!!:thumbsup: :thumbsup:

His numbers are still good and he is looking good!
Acting just as rambunctious as before, playing spider-man and fighting the bad guys.

He's looking forward to his trip to Disney in August with his cousins!!!
Oh and his aunts and parents and new baby too.

So Prayers are powerful tools. Let's keep praying that this was just a glitch in his system and he is still in remission.:mickey:

05-16-2007, 02:21 PM
Well went in for blood work monday and he didn't want to have it done. He didn't want to have anymore boo boos. I'm hoping it was just because a nurse he wasn't used to was drawing the blood. His number weren't good though but his retic ( which shows the "new blood") count was up so we are hoping he's going to pull the numbers up on his own if not he'll need to get transfused again. We go back again next Monday for more blood work. Thank you everyone for all your prayers and pixie dust, it means the world to me and my family.

05-17-2007, 04:32 AM
Sending more prayers and pixie dust for your little one... what a trooper he is, even when he doesn't want to be. He must be very brave. I will keep thinking of him and praying that all goes well next week. :thumbsup:

05-19-2007, 12:19 AM
At least if he needs another tranfusion, he's managed to go more than 2 months on his own. When he was getting transfusions before, it was at least once a month. So I'm keeping my fingers crossed that he'll jump start his red blood cell count on his own. Thanks for the well wishes and please keep them coming for Monday.