Monday, April 16, 2012

Still waiting for tests

Good Evening,

All-in-all Xander is doing well. He is getting some liberty from the IV pole, his friend Gabe showed up with an infection this weekend and got the room right next to us! This was a great time to socialize, had some nice discussions with his family and they played all sorts of different things. Gabe and Xander influence each other in positive ways! Gabe went home today, so his stay was good and short.

Update on Bone Marrow Transplant:

1. Tests confirmed our suspicion that Xander's stored cord is perfect. It sits patiently in Boston waiting for the next move
2. Xander had bi-lateral bone marrow biopsies on Friday. They have come back with the results - there is no living bone marrow. We are waiting for the final, additional tests to come back next Monday.
3. If indeed the donor cells have failed, this leads us down the path of Xander getting his own cord next.

It looks like we will have a "final" plan in place by next Monday. Until then, he is making the most of being without ANY White Blood Cells (like 0.0). This means high risk of infection(s) and ultra-nervous parents.

He is concentrating on eating and getting up out of bed on a daily basis.

His insane itching attacks are at a minimum and nightly baths help keep his skin clean and healthy.

Aaron and I are on a good schedule and just got our carpets cleaned at home (oh, this is so nice...).

Peace and Love to you All and thank you (with all our hearts) for hanging in there with us.

Tracy... thank you for ALL you do!


  1. I am so happy the cord is perfect!!I I have a picture of it in my head and it is surrounded with sunshine and light!

    Xander, I'm happy you got to hang out with Gabe. And I am so impressed that you are getting out of bed and eating each day. You are so, so strong! You really blow me away...kind of like the wind that is gusting outside my window as I write this message!

    Lots of love to you all,


  2. Hey guys,
    That is great about the cord blood. Love hearing good news. Xander, I wondered today if you had a good view of the clouds that blew through? Thinking about you guys all the time,
    Love, Julia.

  3. We are still thinking positive thoughts!! Especially because the stored cord is here in Boston~ where we are! We'll keep an eye on it~~
    David, Asher, and Ezra

  4. Xander (and family),

    It was great to see you during your furlough last week... hope we can do it again soon.... Continuing to pray for you and all your family during this trying time...

    Great to hear about the cord sample results.... eagerly waiting to hear more .... See you all soon, Tom G