Wednesday, March 21, 2018

Bumps in the road

March 21st – After our amazing celebration with the West Boynton Little League on 3/10, Cole had a pretty good couple of weeks. He was handling his twice a week chemo treatments like a trooper! However over the last week or so, we could tell that it was beginning to wear on him.

Last Friday (3/16) when Cole went to clinic for his chemo treatment they discovered that he had a fever. This required him to be admitted to the hospital after his treatment, as they needed to find the source of the fever and address it. On Sunday it was determined that he had a bacterial infection and they began to treat it with specific antibiotics.

The antibiotics have now done their job, however the infection and his chemo treatments have reduced his immune system counts to near zero. This means that he needs to remain in the hospital until his counts recover.

We also recently received word that his modified t-cells (CAR-T immunotherapy cells) will be back to Boston on March 29th. When he gets these super cells is when the real magic happens! We don’t have a schedule to return to Boston just yet as we need his counts to recover before we can go. Hopefully his counts will recover by mid next week. If so, we will then do additional diagnostic tests locally on Friday (3/30). The results will take a day or two and then maybe to Boston sometime during the first week of April.

Today he had an MRI and MRA that were requested by his Boston doctors in preparation for his return trip to Boston. He is also still scheduled to receive a chemo treatment this Friday. In general Cole is doing ok. He is pretty tired and his appetite is not what it typically is. But each day gets a little better. He is allowed to have “very healthy” visitors and has had a few friends visit, however we want to keep this to a minimum for now.

I will continue to send these updates as we continue on his latest journey. Thanks to all of you who have been helping us so much with your thoughts, prayers, meals, rides, watching kids, raising money and so much more! You are all ColeStrong!!! We feel very blessed to have you all in our lives!!!

#ColeStrong, #LittleWarrior, #immunotherapy, #StMarysHospital, #BostonChildrensHospital, #DanaFarber



Me and Cole at the Boynton inlet


Cole with his buds Matt & Jay


Madi, Cole,Denise and Mike





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