Chase is off to a fresh Start

Chase’s hemoglobin continued to decline last week to 7.3 and we decided it was time to have a blood transfusion. We took the opportunity while Chase underwent the several hour procedure at the hospital to meet with a Pediatric GI specialist as well as an Endocrinologist. After the series of meetings and tests, we feel that Chase is getting off to a fresh / “clean” start. His energy level has increased significantly. We determined some of the sources of his stomach issues (fortunately, it wasn’t an ulcer, just a major irritation in his lower tract due to the bouts of diarrhea) so we’re backing off further on some of the supplements and the best news of all – he’s completely off the steroid (decadron). We’ll have a couple more months using a milder version of the steroid (cortisone), until we can get his endocrine system to turn back on in the absence of these drugs, but we’re finally on track to his complete recovery from the side effects. Chase will probably have another transfusion at the end of the week, to ensure that his numbers are all boosted high enough in a “safe” range and we’ll continue to monitor from there to hopefully keep him healthy and strong.

All in all, it was a positive finish to a week of more ups and downs. Chase is in excellent spirits again and we’re hoping to capitalize on his higher energy level to get him back into sports – his basketball team starts next week, he’s in a weekly swimming camp on Sundays, and he’s considering getting back into karate again. These are all great outlets to keep his spirits and energy level high while we continue to fight his condition. Knowing that this is becoming more of a marathon than a sprint, we’re trying to keep the situation as “normal” as possible and prevent his grumpiness from inhibiting the activities we know are good for him. Barbara continues to be a great supporter as well and is signing up for all of the same activities with Chase to keep him encouraged. Unfortunately, it didn’t start off so good – during the swimming camp this morning, Chase didn’t cooperate (despite Barbara’s efforts), but she went through with it and had fun anyhow. Hopefully, it’ll be better next week… with all the prayers, he’s being lifted up throughout the process.

Thanks for all the support!

Love,

John & Carol Sammut
Chase & Barbara Ann