It’s been quite a while since I’ve posted! The last few months have been relatively uneventful in our cancer world. We had two unexpected hospital stays that were both minor in the grand scheme of things. The first was for a sunburn or rash that Dom developed, but when we got to the Emergency Department to have them check it out, I let it slip that he had a temp of 100 the night before. This is below hemonc’s fever protocol, so I didn’t think much of it, but by the ED’s standards that was considered a fever. Bloodwork showed that he was neutropenic, so we were automatically admitted. Luckily, they let us go home the next day once he remained afebrile. The second stay was a bit more “exciting’ – another trip to the ED for a fever. His behavior was uncomfortably similar to that of pre-diagnosis (wanting to sleep all day and really crabby) which gave me a jolt of fear and PTSD. Turned out he was very neutropenic – ANC was only 63! – had an ear infection, a rhino/enterovirus, and needed a blood transfusion. After a night in the hospital, antibiotics, and fresh blood, we headed home to continue the rest of the antibiotics there.  

The second, and probably more honest reason that I haven’t updated lately is because I’ve been really burnt out. This happened to me during Interim Maintenance I so I was sort of anticipating it, but it really hit me. The quitter phases give my mind more time to run rampant which is not a good thing to say the least. The weight of everything we’ve gone through – and have yet to face– really hit me. I have a solid support system around me, complete with a great psychiatrist and therapist, but ultimately at the end of the day we are all facing this alone, in our own ways. Now that the immediate threat has hopefully passed, the collateral damage is starting to become apparent. Dominic has some very, very hard days where he is just unhappy and can’t seem to fit in with the world around him, whether that’s meeting new people or playing with kids at school. When we look at his behavior through the lens of his strong-willed personality, plus his age, plus all the trauma that he’s been through, we aren’t overly surprised that he’s struggling with some things. But still, as parents, it’s heartbreaking to know that he’s gone through so much at such a young age and doesn’t seem to see the world as a safe place where he can let loose. We obviously try to make him feel as secure and loved as we possibly can, but there’s no doubt that a certain amount of his innocence was lost because of all he’s been through. Every night before bed I tell him that mommy and daddy’s job is to keep him safe, healthy, and loved. Some nights there’s a voice in my head telling me not to tempt fate, but for his sake I say the word “healthy” as confidently as I can muster.

Nonetheless, we’re putting one foot in front of the other and have somehow already made it to maintenance therapy! This is a big milestone because it means that the majority of his chemo is done at home and we only have to go to the hospital once a month (unless he gets a fever or other complication, of course). While we’re very much looking forward to the consistency, there’s an undercurrent of nervousness because relapses are most likely to happen during maintenance. All we can do is trust that his team is watching him closely and hope against hope that he isn’t one of the 10-15% of kiddos that relapse. As time goes on, I’m slowly learning to tamp down the fear that creeps into my mind, but some days are easier than others. I take comfort in knowing that Dominic doesn’t have these same fears. I can’t go through the physical part of this for him (though I would in a heartbeat!), but I will happily hold the fear and keep him shielded from it. 

For those that are interested, here is what treatment will look like until January 2024:

At home chemo & other medicines:

• Daily mercaptopurine (aka 6mp)
• Weekly methotrexate 
• 5 days of dexamethasone every 3 months (FUUUUCK)
• Bactrim every weekend to prevent fungal infections 

Hospital Visits:

• Monthly visits for labs and to check/flush his port 
• Lumbar puncture with intrathecal (in his spinal fluid) methotrexate and IV vincristine 

One foot in front of the other…