Sunday, May 12, 2013

The "D" word has been spoken…

Shout out to all the wonderful mothers out there:

Happy Mother's Day!
As I previously blogged, Thursday morning Xander had his first detectable white blood cell count of 200. It would have be a blessing if on Friday he saw a gain or at least held the level. Well… on Friday Xander's WBC count did go up AND held his hemoglobin. Xander did NOT need to get packed red blood cells on Friday! Dr. Kitko an Dr. Tran declaired that Xander to be engrafting as of Friday ♥.

But wait there is more… and here it is… without any further ado… ;-}

This weekends results are so incredible that you need to be sitting down - don't read the next line while driving… As of day +12 Xander has a white blood cell count (WBC) of 2900 with an absolute neutrophil count (ANC) of 1600 AND his hemoglobin is showing recovery (10.4). Xander has been blessed with no fevers (afebrile) and no symptoms of graft versus host disease (GVHD). Xander did get platelets this morning due to falling below the transfusion threshold, but not because of a big drop. Xander actually has been statistically holding platelets for two days.

Dr. Kitko used the "D" word - DISCHARGE - maybe mid next week after Dr. Connelly rotates on if trends keep up without complications. Dr. Kitco ordered the switch from IV tacrolimus (anti-rejection drug) to oral. The first 24 hours of the switch have been fine. We are still taking it one day at a time but I am so thrilled in every nook and cranny of my being - Xander's future is yet to be determined but I am just excited he may have a future. Still, Emilie and I work hard to enjoy each day and show thanks for what we are blessed with.

The mornings seem to be starting out a little rough but improve by late morning. It is not unexpected that Xander does not feel at the peak of his game in the mornings. With a little more time and no more chemo drugs the overwhelming yucky feeling that he has everyday should begin to subside. Monday morning at 9 Xander will get the last dose of scheduled chemo. In the mean time we will take advantage of the anti-emetics that are available. Dr. Kitko has moved Xander over to oral Kytril from IV phenergan in preparation to go HOME. Xander will still need IV magnesium run every night for a while - even while at home.

Friday afternoon, Xander was asked if it was okay for the Department Director of UofM's BMT program to bring several medical students by to visit and talk about Xander's condition. Dr. James Ferrara first came by alone to make sure that Xander was feeling okay and not doped up. Shortly thereafter, Dr. Ferrara returned with 5 medial students.

Everything was going well… for a bit. Emilie received a huge compliment after accurately talking BMT "shop" when Dr. Ferrara asked if she was studying to be a hematologist oncologist (way to go Emilie). The students were amazed that Xander was so knowledgeable about his disease and was so proactive in his own treatment and recovery. Then something strange happened…something really weird.

You will pass out when I say "pericardial effusion"
While Xander was telling the students about last years events, specifially his pericardial effusion, a student passed out and collapsed. Aunt Katie and Erik were in the room, Dr. Ferrara, and four other students but it was Emilie that saw what was happening and hustled across the room to catch the student. Emilie saved the day… but you say what was so weird about that???? Well…

When Xander and I were doing our interview with the K-12 beat reporter for regarding Xanderfest, she collapsed during the same part of the story. Danielle had to leave the room to get a glass of water and passed out and hit her head. We ran to her rescue but the damage was done. I guess talking about draining 410 ml off of a 9 year old kid's heart is overwhelming. I am so thankful to God in Heaven that Xander has had a smooth BMT thus far. WOW!

Last night, Emilie and Molly brought a special treat to the parking lot - ice cream and Admiral Hobbes. Let me tell you, both boy and dog were so happy to be together. Hobbes is such a good dog, he seemed to know that Xander was fragile and did not jump or use his mouth on him - not even one bit. Xander ate his ice cream and played with the dog for a bit and then it was time to go back to the hospital room.

Today Xander's teacher, Ms. Tucker, is coming to learn to play Minecraft. Evidently, she is the last person in the third grade to learn to play :-) Watch out creepers and zombies when Ms. Tucker is in the house!

Not trying to jinx anything, but it looks like we did it. The next big test is on day +30 when Xander will have another bone marrow biopsy that will determine the engraftment percentage (VNTR). Beyond that, the next ninety days will be the most important regarding GVHD symptoms. Thank you all for your prayers - we feel them and it is working.

Peace and love to you all!



  1. well... shazam! keep up the good work!

  2. Yahooooo! Way to go guys!

  3. Well, Xan Man, you've certainly given your Mom a very Happy Mother's Day gift. Keep up the good work.

    We love you!

    Grandpa Howie and Grandma Rhondi

  4. This is great news! So happy to hear.

  5. We are so happy!! So much great news!

    We'll keep the prayers, positive energy and good vibes heading your way!


    The Lowensteins

  6. Wonderful news! I'm so excited for you all! Wooo hooo! *doing a happy dance*