leukemia

MrsStanger

This is a request and a question all packed into one. We have a friend of the family that just found out her 5 year old son has leukemia. Ive started researching ways that friends and family(and strangers if willing) can help! Did you know that if you are pregnant your "left over" cord blood can be donated and used to help childre/adults that have a blood cancer? There is so much research out there and it breaks my heart i didnt know this sooner!

SO the question is. Are there strangers out there that would be willing to donate their cord blood? If you know someone that is sick you can specify who you want your donation to go to or you can put it in a general donation bank to help others. There are rules and stipulations of course. The donation is done annonymously (sp) and like i said you can either do a general donation or you can specify who its for.

Did you know that different ethnicities are harder to donate for? Her son is 1/2 white 1/2 hispanic. The odds of her current pregnancy being a match is 7 out of 10.

SO if you are interested in helping or looking more into how you can donate for a friend or family you can go to BeTheMatch.com and get more information. Fill out the paperwork and take it to your OB to see if he/she is willing to learn how to donate. There are only hospitals in certain areas that specialize in the donation process. i contacted the blood bank and they informed me that there is a kit that they can send and a brief "course" that the doc can sit through so he is able to assist in the process.
If you are willing to help please dont hesitate to contact me! We are trying to save a particular person, but you better belive that if im not a match ill find/donate to anyone else that needs it. We are not even close to being done haveing kids yet so i intend to do this with each of our childrens cord blood from this point on!!

If im in the wrong place for this please let me know and i will move my discussion elswhere

God Bless,

Megan

Goshen, IN

SuperTreesa

I'm so sorry for the little boys diagnosis. We've donated all three of my daughters cord blood. I know that delaying cutting the cord is getting popular due to the IMHO minor health benefits to the healthy newborn. But, for us, I would rather that blood be used to possibly save another child's life.

fancynewbeesly

My daughter was diagnosed with leukemia. Unfortunately for us, we never saved her cord blood. Now, I wish we did  

MrsStanger

@fancynewbeesly what are the treatment options for her? Do you plan to have more? Have you reached out to any banks?

fancynewbeesly

@mrsstranger

Right now she is on the standard chemo and doing well on it. We start step 4 in a couple weeks---delayed intensification. After that she is on maintenance for 2 years. If her treatment at anytime isn't as effective we will definitely look into other routes.

Originally we wanted more than one, and we put that plan on hold right now due to energy, time and cost. But then I feel like if I did have more than one--it would be very similar to My Sisters' Keeper. So yeah. 

MrsStanger

@fancynewbeesly i totally understand the My sisters Keeper. Did you know that in fact having a child to save a child is a bunch of bologna? Most cord blood isnt always a guaranteed for the first child anyways. If you decide to look into cord blood you can reach out to friends and family (and strangers because we all know it takes a village) that are pregnant and see if anyone is willing to donate theirs! The scientist ive been talking with said its all to be anonymous, however, if someone you know donates they can specifically say that it is for your LO You always have options! You are a brave and strong woman.

Meeshe

Nice of you to spread the word.  We did donate my second's cord blood (and I believe it was used, I received a call to verify health info).  I wish more people knew about it.

acesup

Wow I didn't know about this. I wish I had. I'm not sure if we'll have another kid but if we do I will definitely remember this! Thank you for sharing.

My sister is a childhood leukemia survivor, in remission for 20+ years!
Your friends LO is in my prayers as is @fancynewbeesly‌ 's LO Reese

amadden4

I wish more people knew about this. My 9 year old stepson was diagnosed with stage 4 PNET while I was pregnant and we looked into this. Unfortunately, this isn't a treatment option with his type of cancer but I hope that others will seriously consider it. I didn't know at the time that it could be donated for others and wish I had done so.

Missfunball

I'm registered for marrow donation, unfortunately the local blood bank isn't partnered with my hospital so no dice on cord blood donation

Edit:don't get your hopes up ...most people dont do altruism unless it benefits them. Usually someone they know is sick. Though to be super fair people who are against stem cells from non bad places should be all about donating cord blood if able.

JVS311

When my son was born I attempted to donate, but was told they were not in need of or accepting Caucasian donations. I guess the costs of transport & storage outweighed the need for my donation? I contacted a few donation organizations & all said the same.

MrsStanger

Missfunball said:

I'm registered for marrow donation, unfortunately the local blood bank isn't partnered with my hospital so no dice on cord blood donation Edit:don't get your hopes up ...most people dont do altruism unless it benefits them. Usually someone they know is sick. Though to be super fair people who are against stem cells from non bad places should be all about donating cord blood if able.

The nice thing about the website is that you can fill out the paperwork. take it to your doctor and they can let you know if they are willing to learn how to be the one to collect the sample. The hospital you go to doesnt have to be part of the donation list! The paperwork is lengthy and took me almost 2 hours to fill out. HOWEVER you are saving a life so i would like to think 2 hours is outweighed by a life saved.

MrsStanger

JVS311 said:

When my son was born I attempted to donate, but was told they were not in need of or accepting Caucasian donations. I guess the costs of transport & storage outweighed the need for my donation? I contacted a few donation organizations & all said the same.

The truth here hurts. Even if everyone that was pregnant donated the cord blood is put through testing and may not ever be used. However there are research centers out there that take donations as well! If its something you find yourself passionate about (like my blubbering self) It never hurts to research a little! Of course all the paperwork needs to be filled out before the 34 week mark so they can run testing and get everything prepared for donation! Good for you for at least trying!!!

"mixed" children and other ethnicities are in high demand, but again finding a doctor willing to go that extra mile for you is where a lot of the hiccups happen.

rin89

mrsmechanic1 said:

Question on this:  I've heard that you can delay clamping AND donate cord blood.  Is this true?  Does anyone have any input on this?  And does this affect the ability to encapsulate the placenta?  I'd guess so but I really don't know.  Is it something that differs from hospital to hospital, like the ability to bank cord blood?

I'm curious about this as well. I'm fully in the "delayed cord clamping camp" but also see how banking cord blood could be hugely beneficial. Unfortunately, it also sounds like banking cord blood is not a feasible option for all families because of high costs.

billybumbler

I'm not really convinced of the benefits of banking cord blood for one's own child/family, so I opted to donate to the public cord bank blood in my country.

I had to fill a bunch of paperwork before and had to have an extra blood draw and sign some stuff right after LO was born. Unfortunately they couldn't use it after running tests (there wasn't enough of it or not enough cells or something).

I'm still glad I tried to donate though. I would do it again if I have more babies, it might help someone.

MrsStanger

mrsmechanic1rin89billybumbler i was warned that even if i chose to donate and it wasnt a match or usable i could further donate it to science to help with any research being done! Dont feel like because any of you hear no once that its the end of the road! There are SO many options out there!

SuperTreesa

This has been my experience. I've donated the cord blood 3x and it's been the same each time. But it's also been through the same blood bank, hospital and midwife.

At about 27 weeks I call the blood bank and ask for a donation kit. They ask me some basic questions over the phone and then mail it to me. Inside is a ton of paperwork and all the medical equipment that will be needed for the donation. I fill out the paperwork and send in some and keep the rest in its nice little box.

The box gets packed in my hospital bag and then handed off to a nurse while I'm in labor. They add it to the table of scary instruments. A nurse takes some blood from a vein to go along with the donation for testing.

My midwife always seemed to take her time to clamp the cord. Probably 30 seconds- 1 min. She then drains the cord and gets a nice fat little bag of blood. She wrings out the cord to get every last bit.

And that's it. No big deal. But I am lucky to have an awesome public blood bank that also banks cord blood and a hospital that encourages it.