It’s been a little over four months since Kennedy’s transplant!

We have experienced ups and downs throughout the past few weeks. Kennedy tested positive for EBV, but at a very low level. Then her white blood cell count plummeted, resulting in injections done at home 3x a week for a few weeks. This also triggered many changes in medications, trying to see if her immune system was crashing due to certain medications. EBV disappeared, and slowly the injections brought her cell counts back up. Then CMV tested positive, but again at a low level. Now her cell counts are remaining at a good level, even without any more injections. 

At the beginning of the month, her liver numbers were trending in the wrong direction. Although the doctors brought up “rejection”, they assured us that we can continue to monitor and adjust medication…and then on the 14th we got some great news when Dr. Goldner said, “Well, I likely won’t see you here for maybe a few months!”

Kennedy’s labs were great that day, so she was encouraged to spend the afternoon at the zoo! We were told that she can start soccer & gymnastics… she can start attending birthday parties… AND she can try starting school in September! Obviously all of these things make us nervous because she still has a suppressed immune system, but with careful precautions, we will start trying them all out and hope for the best

 

Caden, Kennedy’s little brother, isn’t so Itty bitty anymore… he is gaining weight like a champ! His labs are all trending in the right direction, with his direct bilirubin dropping considerably! Some other LFTs are still elevated, but not concerning at this time. The Kasai procedure isn’t considered “successful” unless the child makes it to age 2 without transplant, but so far, things are great!