3 year old nephew diagnosed with Leukemia. Advice or any info please.

I just found out yesterday that my bf's, brother's three year old was diagnosed with leukemia.  My bf and I are all torn up about it.  I've never known any child or adult for that matter, with leukemia and so, I dont know what to expect.  I am going to do some research on it but was wondering if anyone has had any experience with this cancer.  They currently reside in Florida but his family, including us, are in NY.  We've been told that the hospitals here are the best and so he's moving back east.
He's been undergoing blood transfusions as the Dr's found his blood levels to be 2 when they should be 15?  Not exactly sure what that means either.  I was told that the baby was sleeping alot and went to a party and just laid down to color instead of running around with the other kids. Then when my BIL sat the kids down for dinner (they are two of them) the youngest, passed out and fell out of the chair.  Thats when they took him in.  It's all so sad and he's so small.  He doesn't even speak properly yet.  It's unimaginable to me for this little baby to have to go through what he's about to go through.  I would appreciate any advice or info or even some education on this matter.  Thanks and sorry for such a long posting. :-(

[cantwait4baby]

Horrible Horrible news especially at this time of the year.  Do you know what type of Leukemia?  I know of good and not so good outcomes of kids with this.  

I can be cured, bone marrow may be needed and sometimes is hard to match.  This is something that Cord Blood Banking would cure.  My boyfriend and I have been talking about that It is expensive but can cure childhood diseases like cancer.  

Keep me posted, so sorry for this horrible news.  They will most likly send your nephew to Children's hospital of PHiladelphia.  Kids are sent there from all over just for their cancer treatment.

[newbie2b]

Hey! Thanks for getting back to me.  Well, I know that the little boy, chris, has been getting blood transfusions and that they did remove some of his bone marrow yesterday.  I'm assuming this is how they came up with the diagnoses. There were talks that they make take some marrow from his older brother but again, I'm just going by what being filtered down to me.  
I dont know what type of leukemia he has as they just told us yesterday evening that he even had it.  
On a side note, I've also been thinking about the cord blood thing.  Finding out yesterday made me stop and really think about it.  I know leukemia is not hertitary but, it really scared me into seriously thinking about it.  I dont know.  It's really expensive I've heard.

[deanne11]

I'm so sorry to hear this...I'm praying for you and your family and of course for this brave little boy who is God's brightest blessing and angel.  

If indeed your little nephew is sent to Philadelphia...please let me know.  I'm only an hour and half outside the city and would love to go visit and say special prayers with him....and of course bring him and his family a little special something.

Loving prayers in Christ for your family.

[shm79]

I am so, so sorry that your family is going through this.  I will be praying for your nephew and your entire family.

[cantwait4baby]

I have a coworker who has a nephew who fought it and beat it - has been in remission for a long time.  Then I have a girl who is my age but had her daughter when she was 16, when her daughter was 7 she was diagnosed with it and fought it but then it came back she passed away when she was 10.  Our whole neighborhood grouped together for this little girl it was so unbearable to watch.  Her mother had married and has since had two more children but that time was awful.  The fact that your nephew has a brother is great news - siblings are the best match.  Who knows your baby may even be the match.  I will be praying for a match and that this can be over soon for you guys.

[newbie2b]

Thank you.  That's very very kind of you.  I will keep you all posted on what's going to happen.

Thank you

Erin

[Me2mommy2b]

So sorry to hear such sad news.  Leukemia is something that our family deals with on every day basis.  My father-in-law has been living with it for 10 years (he has the chronic type).  I don't know much about children's leukemia but I hope that the little one feels better soon.  It's good that they're moving back east and getting him the best treatment possible.  It is so unfair for anyone to get that disease but especially for little kiddies.  God bless him and his family and guide them through this difficult time.

[AshleysMom]

I am so sorry to hear this, but most kids beat it.

Are you starting a fund?  Please let us know how we can help.

[baby4Staci]

Hey Newbie.. Im sorry about your nephew's diagnosis.  Fortunately (if there is a fortunate part of childhood cancer) great strides have been made in Leukemia research.  ALL Leukemia has over an 89% cure rate.  AML is a little harder to treat but still has a great response to treatments.  

please e-mail me and i can give you more information and tons of websites that you can go to to research. you can contact me at bambolina9(at)aol  

~Staci

[newbie2b]

Baby4staci: Thank for the info.  That is very reassuring.  I called my MIL to find out the latest and was told that they've hooked up to his main artery and so I guess they are beginning treatment as we speak.  Poor little guy.  My MIL is flying over there on sunday and so I'm gonna go buy him some superman toys (he calls himself superbaby)today and send them over to him.  I hope he really is super baby for all that he will have to endure.

Me2mommy2b: I'm really thinking seriously about storing our babies cord blood.  I know it's expensive but, do they let you have some sort of payment plan or do you have to pay it all at once.  I'm sorry if I'm asking to much but we're really considering it now.

Thanks

[Me2mommy2b]

Yes, they do have payment plans.  You can pay over a period of time if you prefer.  I went with CBR bank but there are tons of others out there.  There is ViaCord, CryoCell and those are the only ones I remember.  I'm sure if you researched cord blood banks, you'd find more.  Good luck and let me know if you need more info.

[Me2mommy2b]

I know that Cord Blood Banking is expensive but like I mentioned in the previous post, my father-in-law has had leukemia for 10 years so it is in the family.  We banked out baby's cord blood.  We're praying that we never need it though.

[baby4Staci]

Newbie,
there is a series of websites set up by parents and family members called caringbridge (dot org)  If your nephew's parents go to this website and set up a page then they will have contacts with many parents going through the same thing.  There are a couple of people that i can hook you up with who's little ones have been through the leukemia fight.  One is a little girl named Katia who has fought and beat AML with a cord blood transplant.  there are two little girls Kendrie and Julianna who have been off treatment for ALL for over a year each.  
Katia actually lives in Tampa and has received all her treatments there so her family would probably be a GREAT help to you.. Like i said before.. E-mail me and i will give you more details...

I hope your little "Super Baby" has a successful treatment with no complications... He is in for a long ride but he will do just great... He will be in my prayers..

[Wooly25]

my DH's cousin, has a little girl that is now a year old she was diagnosed at 3 months.  She is currently in remission after bone marrow transfer and chemotherapy.  The doctors didn't expect her to make it past six months but she did.  I wish you all the luck in the world. God bless you and your family.

[brentlie]

My father and grandmother had Leukemia so I have resurched adult leukemia alot and I know that it is NOT a death sentence!  Technology is so great now.  I am not sure what route they will take for his treatment, but it is great that he has a sybling becuase usually they are a bone marrow match.  My brother gave a transplant to my dad when he was 8 years old and had no problems with it.  I will keep him in my thoughts and prayers!