Monday, April 28, 2014

Bone Marrow Donors - Always Looking for More

There have been quite a few people asking about Tiffany's bone marrow transplant that we are working towards.  Many of the questions are these...

  • Have the doctors found a match for Tiffany? Are her siblings a good match?
  • How do I sign up to be tested?
  • What is the process?

Has a Donor been found for Tiffany?

At this time we are still waiting to hear back if Tiffany has a match.  Her four siblings have all taken the test and unfortunately, none of them are a match.  Each had a 25% chance to be a match, but no such luck.  We were told there were some possible matches in the 'system', but those individuals  need to be contacted and if possible, and if willing, come in for additional tests.  We expect to hear back soon whether or not these individuals are still able and willing to donate.   Some reasons why they may not be could include:

  • Age - they defer to younger peoples donations, preferring ages 18-44 - though you can donate up to age 60.  They don't mean to discriminate based on age, but the older the donor, the more complications that exist for both the donor and the recipient.  In reviewing the registry, some of the matches may have been tested 10 to 15 years ago, and now their age may become an issue.
  • Contact Information - People move, change phone numbers, etc.  They may be a perfect match, but if contact information is not available any longer, they can't even be contacted to see if they would be willing to help.
  • Willingness - somebody may have signed up to see if they could help a friend, but aren't as willing to do it for some stranger.  We think, though, that this is a small minority of people.  We think that most people that get tested, most know that they are unlikely to be the match to their friend/loved one, but could help out somebody else who needs their bone marrow.

How Do I Sign Up to be Tested?

This one is easy.  Go to BeTheMatch.com and sign up or simply click here.  They are looking for donors as well as donations.  It costs about $100 for every person that signs up, that covers the materials, postage, and actual testing.  Testing is free, but any donation you can give can help the cause.

What is the process if I am selected to become a Donor?

There are two types of donation - most common now is the PBSC (Peripheral Blood Stem Cell) donation and if needed, the bone marrow donation.  Thanks to continued study and technology, the PBSC method is a very non-invasive method of donating blood.  See below for details, from BeTheMatch.com.

  • PBSC donation is a nonsurgical procedure and the most common way to donate. For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of cells in your bloodstream that are used for transplant. Some of your blood is then removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to you through the other arm.
  • Bone marrow donation is a surgical, usually outpatient procedure. You will receive anesthesia and feel no pain during the donation. Doctors use a needle to withdraw liquid marrow from the back of your pelvic bone. To learn more, watch the marrow donation video.
After the PBSC donation they would give it to the recipient through a process similar to a blood transfusion.  Once the cells are in the blood stream, they find their way to the bone marrow and set up shop to create new blood cells and a new immunity.  

There is no cost to a donor - all costs will be taken care of by the recipients insurance or through the BeTheMatch foundation.  Of course, you also do not get paid.  You will not be reimbursed for your time and they suggest with all the test and prep work, there could be as much as 20 hours needed over the course of 4-6 weeks, though most of that would be the week leading up the donation and the donation itself.  But the hope is, saving someone's life is worth a little time out of yours.

Status of Tiffany's Bone Marrow Transplant

The Doctors and staff at Huntsman are doing preliminary work for the bone marrow transplant.  Obviously finding a donor is key.  But just as important is receiving insurance approval.  As much as I wish I were Bill Gates, we do not have his resources and hence need insurance to cover the bill.  We are sure things will move forward, but the insurance company wants a ton of information before they give their approval.  We are hoping and praying this won't take too much longer, but additional prayers along that path may help it forward.  Once we have approval and found a donor, we will need to wait for the current chemo treatment to finish.  That too is key, to get all the cancer in her body killed before we replace her bone marrow so that it doesn't come back and wipe away the benefit of having a new immune system. 

If you have questions on the process - feel free to ask in the comments below - we will see if we can find out the answers for you!

Cheers,

Nathan

5 comments:

  1. Thanks for this post. Lots of us have been wondering how we can be checked to see if we are a match for Tiffany. Keep us posted on this! You are always in our prayers.

    Amy Simms

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  2. Can someone from Canada be a donor? If so how is the process done?

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  3. If you are in Canada - go to this website to join the network...
    http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/page/Join_Today?OpenDocument&CloseMenu

    The more we can get in the system, the more likely it is we can find a match for somebody who needs it. Thank you for your question!

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  4. Do you need to be a specific blood type to even try to match up with Tiff? Also do they have the same stringent guidelines about living in certain countries for more than 90 days etc (eg. I can't donate blood for that reason)?

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  5. Blood type, surprisingly, has nothing to do with a stem cell donation. There are specific DNA markers they are trying to match up for it and there doesn't seem to be a specific way to tell who will be a likely match (aside from siblings).
    I believe there may be some stringent guidelines... though from what I have read, I cannot tell you what those are. I would say - go through the donation process and there will be a series of questions online that you would answer that may tell you some of those guidelines. If by chance you are chosen to be the donor (for Tiffany or some other person) I am sure they will do a much more in depth understanding of your possible donation.

    Not sure if that really helps.

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