Saturday, April 21, 2012

Getting Ready

First, I want to apologize to everyone that has been checking the blog daily for "what's happening". Every time, it seems, that we had some new news or further information, the data or plan changed - once, even as I typed the blog entry for posting. So, here is the current deal with a bit of a glimpse of our big drama.

Xander has had two bilateral bone marrow biopsies since last Friday. Both biopsies showed no cell growth in his bone marrow. His bone marrow is completely aplastic or empty. In addition, we have the VNTR results back from the tests. In the first test, the nucleated cells in his marrow were 23% donor and 77% recipient (his). The VNTR results for the most recent test (Thursday) are also back, there were not enough nucleated cells (cells with DNA) to do the test. Obviously, this is not where we would like to be on day +39 post transplant…

So, as we stated before , Xander does have his own cord blood stem cells privately banked and the docs have been deliberating on the cure possibility with aplastic marrow and Xander's own cells. We had ordered all three of the cord blood aliquots (test samples) for a genetic test to determine if Xander's cord was positive for MDS monosomy 7. A 500 cell FiSH study was performed and the results were NEGATIVE. Xander's cord blood does not contain MDS.

In the past week, we have had meetings and appointments that center around Xander receiving his own cells back. We met with Dr. Hamstra from Radiation Oncology to discuss the exact details for TLI (Total Lymphoid Irradiation). Xander will receive a one time dose of 4 gray to suppress the periphery donor T cells (remember 23%) immune response. Xander has been measured using a really cool Philips Brilliance Big Bore CT scanner (see picture) for blocking to protect the surrounding tissue and his brain. The radiation will be focused only on his lymphatic system. Neither the CT scan nor the actual TLI hurts. The radiation will be delivered as ≈ 4 MeV X-Ray, so, not being a particle, will NOT cause Xander to be radioactive. Emilie wants me to add, "We will be able to hug him right after the procedure!" It is like a big X-Ray machine.

Xander getting scanned and measured

Xander's skull and brain

Xander maintaining his smile
After TLI, Xander will receive his own cord blood. We have been working on our play list for the procedure. There is a great sound system right in his room where the transplant will happen. This time, we are allowing Molly to come. The transplant is only as dramatic as we make it, otherwise, it is just like a blood transfusion, but starting with cryogenic frozen blood! Tuesday is the new day 0. TLI and the autologous transplant will all go down starting in the morning.

Thank you for your prayers.

Peace and Love from the Salsitz Family


  1. It has been a tough week, Xan. You're coming through it like a trooper. Hope to see you soon.

    Love you.


  2. That's one good looking brain! We are sending prayers your way that this time around is as easy as possible and we're thinking of you guys all the time. XOX.
    Julia et al.

  3. Thank you so much for sharing all of this with us. We are so amazed by your whole family, you are all so inspiring in the way that you communicate with us and with each other, and by how full of love and appreciation you are even when things are really rough.

    In case you are taking suggestions, Fleetwood Mac's "Don't stop thinking about tomorrow" has been on my playlist during a couple of rough patches.

    You are in our thoughts always and our prayers are now focused on Tuesday being a beautiful new beginning.

    Lot's of love,

    Margo and Ethan

  4. I have some music for you...Miracle and Keep your Head up by the Maccabeats would be great for your mix music. I'll bring it in for Xan to listen to so he can see if he likes it as much as Rachel....we listen to it every morning now to wake up to.


  5. Dearest Emilie and Aaron,
    We sing and pray for you every day. Arco and I always talk about Xander when we are near a really beautiful tree or budding flower. Arco looks at it and says "I have to tell Xander about this this week, man, he would *love* it"
    sending love and strength,
    The Horners

  6. Just wanting you all to know you're in our prayers all the time. We especially think of you when we enjoy those wonderful carrots! Thanks for all the help with knowing what's going on. And it'll be great when we can see you again!