Long term maitenance

August 7, 2017

We had an excellent hospital visit today where Calum received the last treatments of his latest cycle. His counts were up and, for maybe the first time, I had nothing of note to report or inquire about in relation to his health. He did ask me in the car ride in why we still had to go to the hospital since he “isn’t sick”. Before I could respond, he answered his own question and said “Oh, I know! Because we are making sure my leukemic lymphoblasts stay out.” Luckily, we are still able to keep these conversations very matter of fact, but I do have fears for the day when he wants to know about it all on a deeper level.

As of today, Calum has officially completed the first eight months of his three-year treatment protocol. This is quite significant because it marks the end of the “intensive” treatments, the ever-changing cycles, and the constant unknowns of what each new cycle will bring. In two weeks, after a chemo-vacation, we begin what is referred to as “long term maintenance”. Long term maintenance is an 85-day treatment cycle that will be repeated over and over until March 2020, when Calum finally finishes the chemo leg of his battle against Leukemia.  Long term maintenance is something we’ve aspired towards, and a huge milestone in this journey. Initially, when you are in the thick of digesting your child’s cancer diagnosis while simultaneously holding their hand through incredibly painful procedures and the countless other side effects of chemotherapy, “long term maintenance” sounds like Shangri-La.

As we approach this phase and put others behind us, we are learning that maintenance will not be quite the utopia we fantasized about during those early days of watching Calum lay in his hospital bed. Though the strength of his chemo will be reduced, his hair will grow back, and we should know what to expect, long term maintenance will still present its challenges. Calum will receive:

– a daily oral dose of chemo at home

– an oral dose of steroids five days out of every month at home (along with which we will

battle his mood swings and hunger cravings that accompany steroids)

– two other chemos once a month at the hospital

– a spinal tap once every three months for which he will have to undergo anesthesia

It is as confusing as it sounds, and a little crazy that this was initially described to us as “lighter” treatment. I think Mike and I both took it as a shock to learn just how much medicine Calum will still require, even after eight months of intense chemotherapy. These are the realizations that continue to make Calum’s Leukemia difficult to accept but, once again, it is what it is, and we will continue to put one foot in front of the other until we cross the finish line alongside Calum.

Though maintenance is surprisingly intense, after a couple of months, we should hit a groove and adjust to life being, hopefully, more predictable. Many kids return to school and reintegrate into something resembling life before cancer. Calum will not be returning to school yet but, by next year, the plan is to send him back. We feel it’s too risky given the fact that recent studies have confirmed that, at age three, 100% of objects resemble a big red button, waiting to be touched. Our goal for now is to limit the amount of big red buttons Calum is tempted to touch in a day. We would like to clock as many uninterrupted months of treatment as possible by keeping his damn hands off everything/everyone he sees and, therein, germ free.

Though we know we have a long way to go, in looking back to late December, we have come so very far. We have been able to do some great stuff this summer. Most notably, we attended two amazing fundraising events for cancer research; the first was Swim Across America, where funds went directly to a research lab at MSKCC and, as a small event in our town, raised over $1million; and, last weekend, we travelled to the Pan Mass Challenge (PMC) where, as many of you know, my dad rode in honor of Calum. It was an unforgettable experience to take Calum on his first trip since he’s been sick to this special event. The PMC raised a whooping $48 million for cancer research at Dana Farber. Aside from Faye doing a man-sized puke in the back seat of the car on our way up to MA, the weekend was a major highlight in our year. I’d also like to take this opportunity to thank our family and friends who so lovingly contributed in honor of Calum to both events. We are touched by the outreach and kindness in your hearts. We explained to Calum these events were to help give money to the hospital that makes him better. He accepted the explanation without further question.

There is certainly a reason why things appear smaller in the rearview mirror. I won’t go so far as to say that some of what’s in our rearview is out of sight yet, but we are trying our best to move forward. It is very hard. We are often unsure of how fully we can take on life. Where do we need to hit the brakes and where can we accelerate a little bit more? The objects still coming at us ahead on this road look pretty big, but I do keep faith that we will continue to put things behind us and deeply look forward to this all, one day, being a distant mirage

Calum and my dad at the Pan Mass Challenge in August.


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