Help Cure Caleb- Caleb's Journey

So getting used to this portion of his treatment has been a learning experience. As much as you want to let your guard down, you don't. I still worry, a lot... and that I don't think is going to stop anytime soon. I mean realistically, I always worried just being a mom - but now I have other types of worries as I try and let my son have as much as a "normal" as I can without putting himself in danger. One thing that has been hard getting used to is not knowing his counts. Knowing each week was so much more of a safety blanket for me. Knowing if he needed a blood transfusion or what his immunity level to illness was helped me gauge what I'd allow him to participate in and not. Today though, I found out those counts and I am okay with them. Everything is in normal range for him, meaning it's not normal for any of us, but for still being on daily doses of chemotherapy - it's a good range for him. His liver enzymes aren't elevated, so he is tolerating

So we are head first into his first cycle of LTM. Having a certain time I need to tell him to stop eating and drinking each day hasn't been easy, but we are managing for this to be a new norm. A few meltdowns of being hungry ten minutes before his chemo, trying to wake him to take it (did that one night, some mom's told me their kids did well that way - never again!) or changing bedtime to coordinate the schedule a few nights.... but overall he's been doing well. On the other hand, I am still very cautious. Nervous with the flu season upon us and as I see growing numbers on the news. Flu can be fatal to Caleb and those that are immune suppressed. Not knowing his counts and him taking chemo daily is still making me question everything. It will just take me a while to get used to this new normal. I actually almost brought him in the other day because he napped. Caleb never naps, and it was out of sorts and I went into panic mode and called clinic. I think just not knowing t

June 22, 2015 After reading through Caleb's thick medical chart of records, that's the date that Dr. Eslin stated. That's the end of treatment date. Two years and a half to go. The last 9 months have been a roller coaster and I am hoping and praying that the rest is just smooth sailing for my little boy.   Caleb began long term maintenance on Thursday.     This is a phase we have been longing for since dx. They say things get easier from here and out, though I've seen differently from other moms and kids battling this beast.  BUT I am going to remain positive, take each day as it comes and continue to believe this is and was the best plan for my little boy.   Now we will be visiting our nurses and doctors only monthly for visits, unless he gets sick or I suspect something. His counts can still bottom, as I've seen other kids do in this phase so I'm still on the lookout for signs and symptoms of low hemo or low platelets and as always a fever. He wil