Sunday, April 8, 2012

A Wolf Named Zoster

Xander's Varicilla Zoster virus is looking nice and scabbed over now. This is necessary before Xander can get off of Respiratory Isolation. The Acyclovir and Immunoglobulin (IVIG) that Dr. Connelly ordered likely saved Xander's fanny. Atarax and the iPad have provided the itch relief necessary so that Xander is not a super itchy spasming 8 year old wiggle worm with a bad temper. We are hoping for a non-isolation room ASAP - maybe early next week! That is the good news…Now for the rest of the story…

At first, there were signs of engraftment - we shared those on the blog. Xander even had a very common. mild case of GVHD rash that is actually a good sign of engraftment. His counts did go up to almost non-neutropenic levels, he was even starting to hold his own hemoglobin levels and platelets…almost…

So, here is the issue; since shortly after the Varicilla Zoster viral re-awankening (he had the real wild chicken pox around two), Xander's WBC count as been 0.1… that's not good - he has no immune system whatsoever - still. The rounding docs started talking about engraftement issues now we are talking about a rescue. A genetic test was done at Day +21 that normally is done at Day +30 to determine the genetics of the existing White Blood Cells (the only nucleated cells}. We will have the test back on Monday or Tuesday. Xander was given some additional drugs last week that should have increased his engraftment level. So far…no dice. In addition, he has not held onto transfused Red Blood Cells nor Platelets.

Fortunately, this past week was the first of two weeks with Dr. Levine rounding. Dr. John E. Levine is the Chief of the Bone Marrow Transplant service here at University of Michigan. Dr. Levine (sounds like divine) is a very intelligent and thought filled man who is clearly at the top of his game. He catches everything during the morning report - he really seems to be able to visualize the whole picture of Xander so that even a slight dosing units blunder is caught and must be corrected. Yay!

Now that he is actively on our case, I suspect we will have his personal attention for a while…
As I have stated before, Xander has always pushed the envelope in everything he does - from reading early to… er… well, everything! This Bone Marrow Transplant is of course no exception. After multiple conversations with Dr. Levine, some facts and options are on the table at this time:
Xander has 6 units of his own cord blood that we stored in our freezer (just kidding) when he was born. In mechanical terms, his own cells were not an initial cure for Myelodysplastic Syndrome because his own cells would not provide the "friction" necessary to annihilate the remaining 1% of the bone marrow cells not killed by the chemotherapy that would still contain a 5% dysplastic colony - five out of every 1000 - still a whole bunch. We have no idea how many of Xander's original cells actually survived the partial engraftment and are alive now- this will be determined later this week by a bone marrow aspiration. The results will take 7-10 days to get back.

Back to those original stored cord blood cells… Emilie found out that we hired a top notch service to store our children's cord blood on Thursday. The New England Cord Blood Bank (NECBB) rocked our world that they had the foresight to process out 3 aliquots of samples when they originally processed Xander's cord blood. On Monday, one aliquot will be sent for genetic testing STAT to see if it is predisposed to MDS monosomy-7. We obviously are praying that it is not. Dr. Levine, I believe, has committed (≈85%) to the fact of Xander getting his own cells back as a stop gap rescue no matter what the results of most of the tests are. He, however, did suppose that if Xander's cord is monosomy-7, he would likely lean directly towards a living donor or double cord transplant to get the cell volume increased and not put back the MDS.
In further discussion, Dr. Levine and I spoke about conditioning Xander to increase the engraftment rate and decrease the mortality rate of Xander's own cells returning to the body in addition to possibility of destroying any remaining MDS cells with radiation or chemical agents. Strong chemo agents are out as Xander is very immune compromised already and Dr. Levine does not want to create additional issues at this time.
Dr. Levine seems to enjoy rising to a challenge. He really seemed to be intrigued at the possibility of Xander keeping is own cells as a final treatment. He said that individually, there have been cases with the three primary factors (stored cord - MDS -  failed engraftment) but no single case with all three - ever.
Dr. Levine is attending a conference on Tuesday at which he will informally discuss Xander's case with his peers. Currently, he is considering the hypomethylating agents class of drugs and high on his current list are Azacytidine and Decitabine. Ideally, these agents target MDS cells only and have a tolerable side effect profile. If we could destroy the MDS cells first…that would be AWESOME!
Xander and Molly playing iPad games together with a new Wolf donated by 7th floor friends!

Xander has been getting back to his non raw vegan roots by requesting Zingerman's 30th Anniversary Blend caffeinated coffee with double cream and double sugar. I am very happy to trade him to eat while he drinks his coffee. So far, he'll do anything for coffee. Molly begged for coffee and of course I gave in. I allowed them to split a 16 oz coffee.

Thank you everyone for your love and prayers.

Peace & Love,


  1. Hey Guys,
    Sounds like you have a good team of caregivers. I think about y'all every day. Hugs from the Borgers.


  2. Wow, Aaron, thank you so much for keeping us up to date and in the loop.

    We are right with you in praying for the cord blood results to be non-monosomy 7, for all of the MDS cells to be destroyed, for Dr. Levine to truly rise to the challenge, for Xander to get out of isolation and to be well. We pray for good things for Xander and for your whole family.

    You and Emilie were so smart to store Xander's cord blood and to use such a good service to do it. And we are so happy that you are in such good hands at Mott. Dr. Connelly and Dr. Levine sound awesome.

    We hope this week brings good test results.


    Margo and Ethan

  3. Hi guys, ditto Margo's comments - this is truly a dance with changing circumstances and creative solutions! Love the photo of Xander and Molly!! So great to see such smiles...

    Our hearts go out to you all!


    Laura, Dale, Corbin & Wilder

  4. Hi all. We are sending loads of positive energy. The kids want to pass along a message of strength as well to Xander and have told him to continue to be a warrior.