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.
10 thoughts on “Closing in on the finish line”
Hey super Momma! This post came well timed for me. This Friday is Ori’s “last” treatment after 14 month on of weekly chemo on this drug. I wish it was a more clear cut end, but it’s still an end. His tumor is still there, but is smaller and no longer enhanced on the MRI at all. This means it’s not active any more. If it stays like this forever Oris good to go. If it decides to come back to life, we are back to figuring out what to do next. Oris de is very optimistic that we could be done now and that we have permanently paralyzed the tumor. This is what happens often in cases like this. Just in case, port stays in for 6 more months while we watch his tumor w MRIs. I relate to so much that your wrote. So happy for you momma. SO happy that you’re heading towards the finish line. I’m praying that Oris finish line is Friday. Sending lots of love!! -Sophy xxoo
I love hearing Ori’s good news so much and I have all the hope and am putting out all the good vibes that his tumor will remain at bay!!!! You’re the best. ❤️❤️❤️
WOW! Beautiful! Continued prayers for you all!👍👍
Thank you 🙏🏻❤️
Caitlin: MSK is also my hospital since 2011. I have the most amazing drs. Did you know there was a possibility Calum’s protocol might change or was it totally out of the blue? Either way, such a gift. And not to have a port. That’s when you begin to feel that things are getting back to normal. So happy , as always, to read your blog. You’re an amazing mother!
It’s an amazing place. We had no idea it was a possibility. We knew a trial had been run, but didn’t anticipate results to be available in time for us and also had no idea what the differences were. They also don’t like to tell you something unless it’s definite in our experience, which I think is probably a good policy.
Oh also!! Headed to MIDD Saturday and so very excited!
My niece was diagnosed with AML at 2, it’s one of the worst types, rarely seen in kids, but she had one of the best subtypes (hey you take the little wins).
6 months in hospital receiving chemo, then oral chemo for another year. Terrible stuff. Anyway she’s now 16 and thriving. Not one ill effect from all the poison pumped into her tiny body. Medicine is amazing x
Love you Murray’s yesterday, today and tomorrow…forever!