Marrow Mania

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Wow you guys, I have been completely inundated with so many of you wanting to know how you can be tested to see if you are a match for Allistaire.  Thank you for your beautiful desire to help!

The place to go to get all of your questions answered is:  www.marrow.org

However, I am going to attempt to answer a few of the major questions here:

  • The only way for you to be tested specifically for Allistaire is to have the HLA (human leukocyte antigen) done on your own with your own health care provider, at your own expense and then have those test results sent to Dr. Jessica Pollard at Seattle Children’s Hospital.  You are not able to be tested on behalf of a specific person through the bone marrow registry, as it is a means for you to be matched with anyone who might be in need of a donor.
  • As I understand it, because neither Sten or I, nor Solveig are a match, closer family members are as unlikely to be a match for Allistaire as someone off the street (of course this is a generalization, but tends to be the case)
  • Ideally, we want the bone marrow of someone between the ages of 18 – 44 years old.  Not that we don’t appreciate all the love and willingness from the over 44-year-old set, but apparently, this age range is the doctor’s ideal populace because of the health of their bone marrow and of course we want the very best for Allistaire
  • Getting tested is super easy – simply go to http://www.marrow.org and click on “Join the Registry Online.”  You will be directed through a number of questions in order to initially sort out those who cannot donate.  I myself am unable to do so because of an auto-immune disorder I’ve had in the past.  If you are a viable candidate to donate, you will be sent a little kit in the mail to swab your cheek to begin the tissue typing process.
  • If you are serious about joining the registry, please know that the speed with which you take every step and respond to all requests by the registry is literally helping a real person.  There really is someone in a hospital bed, with cancer gnawing at their flesh, waiting for your cells to rescue them.  If they call you, call right back.  If you have to go get a blood test done, do it that very day if you can.  Yes, inconvenience your life – because you have these choices and you may be able to help someone who is out of choices.
  • While I cannot tell you how much love I feel from you all who have said you can get tested, please, please, do this regardless of whether or not it will help Allistaire herself.  When this reality first hits you it is easy to say, “Why me?  Why my child?”  It did not take long at all for me to see the other side of that.  The truth is, Allistaire is no more wondrous and cherished and valuable than any other child.  Yes, we know her.  We know her blue eyes that smile and her pudgy dimple in her right cheek and her silly dance moves.  But, I don’t have any more right to have a living child than any other mother or father.  Register regardless.  And again, if you’re not white – yeah!  All the better!  You clearly won’t be a match for Allistaire but your cells are oh so desperately needed!
  • Will it hurt you wonder?  Yeah – a little, and I’m not exaggerating.  You’re thinking, oh gosh, gigantic needle stabbing my bones, I couldn’t do that.  Yes you can.  You’re a big kid now.  Listen, Allistaire had a gigantic needle put in her back 8 times on Friday.  She left with a band-aid and has had not one dose of pain meds and has literally been jumping around on her hands and knees, jumping off stairs, running everywhere, spinning, spinning.
  • So, take all that enthusiasm and desire to help and follow through.  Go online, register, do your little cheek swab thingy when it comes in the mail and then be ready to act with speed should the call ever come.

And just a little clarification for what Allistaire herself needs.  She needs a donor ready to go by the end of this first round of chemo because we are so hoping and praying that she will indeed be in remission by then.  I am realizing that saying, “round of chemo,” has been a bit confusing.  This “round of chemo,” involves 7 days of shots and 5 days of chemo itself but the actual “round of chemo” is 28-35 days long because it includes the full time for the chemo to wipe out her blood counts and then for them to rise again.  In this world, the ANC or Absolute Neutrophil Count (one of the specific types of white blood cells), is the key number we watch.  On Friday, Allistaire’s ANC was about 1400.  About 7-10 days after chemo it should drop to zero and then it stays there – how long totally varies.  Allistaire’s very first round of chemo ever in December 2011, her ANC stayed at zero for 18 days, which is a very long time.  It could end up at zero for only a few days.  Regardless, the “round of chemo,” is not considered complete until her ANC again rises to 200.  This is the golden number that allows you to leave the double doors of the Unit.  This is when you know it is time for another bone marrow biopsy and aspirate to determine if she is in remission.  This is why I say we need new donor cells in about 5 weeks.

5 responses »

  1. Jai,
    Thank you so much for the information. I immediately got online to begin the process to become a donor. Sadly, I have Factor V Leiden, so I’m a “no-go.” :o( I was so hoping I could help Allistaire or some other beautiful person needing this.

    I am praying Isaiah 41:10 for you: “So do not fear, for I am will you. Do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.”

    Love and prayers.

  2. The journey your family is embarking is an arduous journey indeed. Many, many risks but the rewards are without reproach. I heard of this grave misfortune early this morning and your Allistaire has not left my thoughts since. Don’t worry about the match…the Docs will take care of that. We sincerely feel for your family and offer proof that this can be overcome.

    Thoughts and prayers…we’ll see you at the SCCA downtown.

    Ty Hamlin (double cord transplant Abis’ Dad)

  3. Dear Jai, Sten and Allistaire,
    You have been in our thoughts and prayers for the past 1+week (and in the previous months) but especially these past two days. We trust you have felt the presence of our Heavenly Father as you deal with all that is happening. I, too, thought about offering to be a donor as I have been blessed with good health, and then learned that I am “way too old” at almost 74! So thankful for all you have shared with all of us. “Talked” with JoMarie today to see if there was something more we could be doing. Another friend from CBS who is also going through trials wants to communicate so will get the web site to her Our love and continuing prayers, Joe and Bethel

  4. Hey there:) Been saying so many prayers for your sweet one and family. Ed and I just went on-line and both registered to be a donor… kit arrives in 2 weeks! would love to help someone out in this way! praying God’s peace over you:)

  5. Jai. You are in so many of my thoughts and prayers. I am home now. And I am here if u need someone to talk to. Hugs for you and Allistaire.

    Love in Christ,
    Alicia

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