It’s been a while since I’ve put the figurative pen to paper and written anything of length about Calum, his health and how we are all continuing to make our way through life. So much of my thoughts about Calum and Leukemia, at this point, are consumed by us being so close to finishing this chapter of our lives.
In June, by complete surprise to us, Sloan Kettering changed its treatment protocol for children with standard risk Acute Lymphoblastic Leukemia (ALL). A successful trial had been conducted at Sloan to treat kids with Calum’s same diagnosis with less chemo; the results were very positive and their changes were implemented immediately, which is one of the cooler things we have witnessed in our time at MSK. In real time as a result of real science, Calum is now receiving less chemo for the remainder of his treatment protocol (until March 2020) than what he had previously been prescribed. This will likely become the new standard of treatment for kids with ALL nationwide at some point, but because we are lucky enough to be receiving treatment at this incredible hospital, we were able to benefit from it right away.
His once monthly infusions and bouts of steroids have been extended to every three months and this was, honestly, life changing for us. The gift of giving his body two extra months off his more intense chemo coupled with not having to put him on steroids every month was something we never expected. Calum not having to be on steroids each month felt like the biggest win, personally. I have tried not to complain much about the steroids because we had no choice but to live with it, but to see him become so emotionally altered for the better part of a week out of each month really chipped away at me. For him to be brought so easily to tears or anger, and yet not able to understand why, has been one of the hardest parts of his treatment since day one. It has always been a conundrum for me – I could explain to him the ways in which his medicine effects him, but I don’t want to run the risk of deterring him from taking his medicines. Not once since diagnosis has Calum ever protested taking his medicine, which has been an incredible gift. Even this morning I overheard Calum and Faye chatting while they were getting dressed for school; his stomach was feeling queasy, and I heard him asking Faye if she ever wakes up with her tummy feeling funny. She replied no, and Calum proceeded to let her know it happens to him all the time. Faye then pretended to be sick. In any event….we received the phone call from Calum’s oncologist to let us know about this huge change in treatment while at a family dinner celebrating Calum’s last day of school last year and it brought both Mike and me to tears.
Equally as monumental was the fact that, because he would no longer be receiving as frequent infusions, his port would be removed to reduce any unnecessary risk of infection. He would be required to get more needles, which is another hurdle, but not having a port granted us so many freedoms we had been stripped of over the last two and a half years. The port was the biggest emergency factor when it came to fevers. Any time he got a fever when he had the port in, we had to get him to the hospital within an hour due to risk of infection. The relief of not having to think about the emergency plan for every single scenario lifted the weight of about a million pounds off of my shoulders.
After a couple weeks of healing from having his port surgically removed in early July, we were lucky to enjoy so much of what I had missed most about summer. Summer, as seared into my memories from my childhood on Cape Cod, is about carefree time spent in the sun and playing in the water. Being able to bring Calum and Faye to play in the water this summer without the fear of his port getting infected was nothing short of magical for me. In retrospect, this year was the perfect year for us to really enjoy swimming. The kids both were old enough to have a little more stability in the water, so monitoring them playing in the pool or at the ocean was less stressful than it would have been a year ago. It’s not lost on me that the timing of everything in this process has been somewhat fortuitous.
In September, Calum started Kindergarten – a milestone for any parent, indeed, and a true triumph for us. So far he is doing great. His teacher pulled us aside to let us know he is “really reading” the other day. I nodded in agreement, and she said, “No, but he is REALLY reading.” I figured when he began school that she would catch on, so I didn’t mention that Calum is fairly advanced for his age, but I continue to chuckle to myself when I hear him speak in such unusual terms for a five year old. The other day he was instructing Faye on the correct way to write the letter “y”. He was incredibly troubled by her lack of interest in proper letter formation and, through his frustration, he exclaimed to me in despair, “Mom, Faye sometimes just won’t listen to me unless I speak with her firmly.” Another thing I already knew…
Faye continues to bring the fire and fun to our house. Everywhere she goes the excitement follows. Because I am able to spend such quality time with Luke now while both Faye and Calum are out of the house and in school, my heart sometimes aches for the one on one time I lost with Faye over the many, many months of us being so focused on Calum’s health. Something tells me, however, she is going to be just fine. No one really fucks with Faye and it’s kind of my favorite thing in the world.
Luke is now almost six months old and I can hardly believe it. Just like that he is a full on member of our family and, from the bottom of my heart, he is a tiny angel. He’s sleeping really well, which makes a big difference for me mentally and physically so I’m grateful for that, but I will say there is something kind of extra special about him. His smile is penetrating and, almost everyday, I whisper into his ear to let him know how lucky I am to be his mom because he’s everything I prayed for in my last baby.
In a handful of months Calum will complete his treatment and we will begin to know life without cancer again. In some ways I can’t believe it’s almost over and, in other ways, I still can barely believe it ever happened, but I have every hope and every expectation of leaving this all behind us forever. Our conversations about it will continue and the story for Calum will evolve as he grows and understands more about it but, in the end, all that will matter is that we’re having the conversation together. No matter which way we slice it, I’ll never truly know what he’s been through and he’ll never truly know what we’ve been through, and I guess I kind of just hope it stays that way.