Hello all,
My name is Denise and I am the mother of a 24 year old daughter
(Nina) who was dx at age 20 with CML. Today I spent several hours on
the phone trying to gain information re: cord blood collection
because Nina is pregnant wih her 3rd baby since dx and is expected to
deliver in the next 2-4 weeks. Yesterday, I was of the opinion that
the harvesting of Nina's babys' cord blood was not going to be very
beneficial to her personally. Today I have a different opinion based
on new information that I did not have yesterday.
I apologize if the information that I have today is info that has
already been discussed in this group. It is new info to me and
therefore something I am excitedly, compelled, to share with you.
Today we found out that Via Cord (a U.S. private cord Blood bank) has
a program they call "Extra measure program" which offers FREE
collection and storage of cord blood from babies whose parents or
sibling have a disease which can be treated by stem cell transplant.
To me this is a true blessing!!! Today I have HOPE!!!
FYI: Statistically a BMT using (HLA tissue typing) stem cells
gathered from a living donor they are looking for 6 markers
...4 of 6 is an adequate match. 6 of 6 is a perfect match.
With cord blood they look for 3 of 6 markers.
Today I was told that an HLA 4 of 6 match Related donor is better
than a non related 6 of 6 donor. And that a related fetus is better
than a related Adult. Also, that with a fetal donor you are less
likely to aquire GVHD and other complications.
If you are a CML patient and you or a Family member is going to
give birth or you are the parent of younger adult children who may be
giving birth in the near future PLEASE PAY ATTENTION!!!! Viacord has
a web site that has information that is unique to you. You may very
well qualify to have your grandchild, child, neice or nephews' cord
blood harvested and stored for free or only have to pay the annual
fee of $125.00 year.
I have permission from the person I talked directly with today to
offer her name and direct line to you.
Via Cord: Kathy 1-617-914-3655
Kathys'hours: Days 10:00 am - 7:00 pm Eastern Standard Time
I fould Kathy to be a delightfully, empathetic person who was very
easy to talk to and who was extremely helpful in answering all my
questions.
Viacord has a 24 hour open phone line with other personnel qualified
to help you.
Please know that I am not a salesman or are connected personally in
any way to Via Cord. I am a Mom with a CML daughter who is very
excited about information that can be very beneficial to many CML
patients on many levels. There have been many (potential) dads to be
who have inquired on this website about their chances of fetal
viability who may benefit from their babys' cord blood. There are
many (Potential) moms to be who may benefit from their baby's cord
blood.
On a personnel level an update on Nina: Nina is currently pregnant
with her 3rd child since dx and has chosen to be off gleevec with
every pregnancy. I know that there are many potential moms who are
eager to aquire information re pregnancy and CML while on Gleevec.
Please feel free to contact me personally. I'm not always reviewing
the CML message board.
My other daughter, Nicole, (Nina's only sibling) is not a match to
Nina. Nicole delivered her first child in October of 2005. She was
offered, by her delivering hospital, to harvest her baby's cord blood
in a public blood bank. Had we known that Via Cord would have
harvested her baby's cord blood free of charge we would have done so.
Now we are placed in the position of petioning the public blood bank
to release Nicoles' babys' cord blood.
Yesterday, we were unaware that Ninas' babys' cord blood or Nicoles'
babys' cord blood would be beneficial to Nina. Today we are more
aware and more hopeful, and are waiting to see if either will be a
match or an adequate match for Nina.
Sorry for the lengthy message. The enclosed information is as acurate
as my understanding and processing of the information that I acquired
today is.
Denise
Nina's Mom
Dx March 2001
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