Sunday, December 21, 2014

T It Up!

Good news on the T cell front - Ezra's T cells have reached the normal range! We also received the results of the general function T cell test and his T cells have surpassed the "two-thirds of normal" immunological marker. They aren't functioning normally yet, but they are making slow and steady progress towards a safer place. Looking back to September, Ezra still had very few T cells, and it felt like we would never see the day when he would have normal T cell numbers. Now, three months later, he made it!

Although we have reached this milestone, nothing changes as far as his treatment and isolation. In fact, Ezra had normal levels for these tests prior to transplant, but this is an important milestone for a post-T cell depleted transplant patient. We still need to see if he can make antibodies in response to the vaccine. This will be the true test of whether he is cured. Another round of tests to see if he responded to the vaccine have been sent to the lab, and we should have the results in the next couple of weeks. Please send some positive antibody thoughts Ezra's way!

We have also continued the slow wean of the immune suppressant. Getting off the immune suppressant and steroids is another challenge that Ezra needs to surmount in order to have a properly functioning immune system. His doctors are keeping a close eye on his counts to make sure there is no autoantibody flare up while we wean. So far, so good. 

We have been fully enjoying the light of Hanukkah this year. It isn't just the giant menorah that is once again on our front lawn. It is the love that has been bestowed upon Ezra. He has received gifts from many people who we know wish him good health most of all, but want him to also enjoy himself in the meantime. He is having a blast! 

We also had the opportunity to celebrate the holidays at Menorial Sloan-Kettering's annual pediatric holiday party. We spent time with Ezra's wonderful primary nurses from his time in-patient and celebrated with the doctors, nurses and staff who have gotten us through the most difficult times of our lives. It is also Ezra's favorite time of the year at the hospital because hidden away in the basement level is a magical hallway transformed into a winter wonderland by the operations staff, including a model train display that always captivates Ezra. We've become experts at finding light in even the darkest of places. Happy Holidays to all!


5 comments:

  1. Keep those T-cells working. Happy Ezra was able to enjoy the outing. Continue to find light with there seems to be darkness. Positive thoughts sent your way.

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  2. Speechless!!
    So happy for you guys!♡♡♡

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  3. so happy for all of you !! Continued good health

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  4. What a wonderful gift for Chanukah. We'll all keep those positive vibes going and pray for those antibodies to work really, really well. Can't wait to hear some more great news in the near future. By the way Ezra looks fantastic!
    Much love always,
    Michele and John

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  5. Mazel tov! Praying for continued improvement.

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