Tuesday, January 21, 2014

MDS - Second Anniversary

Xander's Yggdrasill

January 21, 2014 - Today is the second anniversary of Xander’s MDS diagnosis. OMG, trying to wrap my mind clearly around the past two years boggles my ability for clear thought and makes my heart fill with wild emotions that I hardly have the ability to contain. As I sort throughout my thoughts, I find that one part of the situation resolves quickly and clearly - community.

As a family, we have included you (the reader of Xander’s Journey) in the experience of extremely difficult times along side the times we have shared together in love and brotherhood and you were there. We have invited you to participate in the financial support of our family and you came through for us. You have thrown parties in Xander’s name and you have sponsored our family two years running for Christmas. You have collected change from your piggy banks and you have sent us large gifts of cash at just the right time to help the family not unravel. You continue to provide the medical treatments that insurance does not cover. As Xander’s Dad, I really can not thank YOU enough for the hopeful prayers and loving thoughts that you, your friends, and your family continually send.

Thank You

Now that I have emoted, here’s an update;

Xander has been doing much better with eating. He is finally off of TPN (IV nutrition) and is stepping up his consumption of “real” food. Xander is resisting his restricted diet less and less although we have allowed him to have a couple of risky foods occasionally in order to bribe him (he’s still 10 remember). I know this will sound strange but, we even celebrated the fact he has gas and can kick out a stinky toot or two. This is a wonderful sign that he has solid stools and is digesting food. We still have him float all of his medicine capsules in apple juice for a few minutes before he takes them in order to guarantee absorption.

We have been hooked up with Ms. Tucker in order to keep Xander up to date on the fourth grade main lesson block. He is reading a book on Norse mythology recommended as a substitute for class discussion. Xander made this really great drawing in his main lesson book of Yggdrasill which is the nine worlds for all the creatures to inhabit created from the void. My favorite part of his drawing is the red squirrel named Ratatoskr who is the messenger between the worlds.

Many people would like to know when Xander can return to school. The truth is that we don’t know. The problem is that Xander is still very immune suppressed. The docs tell us that if Xander gets a respiratory infection, it will very likely immediately turn into a situation involving a ventilator and might develop into GVHD of the lungs. Obviously, this is not what anyone wants. However, I do want to point out that we will keep him out of school only as long as the risk outweighs the reward. Xander did go through the third transplant so he COULD return to school.

As for the not-so-good news - We have been dealing with a hematology issue over the past several weeks. Xander’s platelet level has been trending dramatically downwards with a sudden drop (40%) reported today relative to last week. We ran a test to see if it was antibodies he might have picked up with a transfusion - the test was negative for antibodies. Emilie emailed Dr. Connelly today, and we will talk him on Thursday morning. We will post on the blog when we know more, however, it will not be for a few weeks as the genetic test result just takes that long.

--- Peace & Love,

1 comment:

  1. I am so happy to hear that Xan Man is doing much better. We keep missing each other when I call as he is out at HBOT or something. When I call earlier, he is eating. Well, we'll catch up soon, I hope.

    I am planning a short visit the first week of April after a business meeting I have in Chicago. Maybe, this time, unlike September, I can actually hug my boy!!!