September 21, 2017

The last few weeks have been a little rollercoaster-y. I’m pretty sure that’s a word. Getting used to the first week of long-term maintenance (LTM) at home was, like my teary meltdown in front of our doctor a few weeks ago, unexpectedly emotional. I was having a hard time coming to grips with the intensity of our “new normal” and whilst still sort of feeling sorry for myself, both kids got sick. Faye first, then Calum. Faye started with a fever that turned into awful, scary croup and Calum’s fever wasn’t far behind which meant of course we had multiple doctors and hospital visits and sleepless nights for a good week.

Faye struggled with the virus more so and she had a fever for a good four days, which scared me because one of the indicators of Calum’s cancer to me was his persistent fever. Because I’ve been bitten before, I took Faye back to the doctor for one last visit to make sure she wasn’t suffering from any secondary infections, like an ear or throat thing. Our pediatrician’s office is a large practice, and we don’t usually even see the same doctor each visit, but we were coincidentally placed in the same room with the same doctor that I saw the Friday before last Christmas when my fears that something was very wrong with Calum were dismissed and we were sent home. I will never forget the events of that day, and the lack of satisfaction I felt from being sent home, despite having asked for blood work on Calum. It turns out, that doctor didn’t forget either. It was clear she had been waiting for the opportunity to see me.  She immediately asked about Calum and I could tell she has felt regret for a long time as she confessed to me how powerful a mother’s intuition is. I told her to please not worry about it, and that I realized that 99.9% of the time, she would have been right with her summation of Calum. I did truly appreciate her acknowledgement, however.

In hindsight, I am actually glad we were sent home from the doctor that day with Calum, as we were able partially enjoy Christmas. In the end, those two extra days will not change the outcome for Calum, and the time lapse will have been an excellent lesson for both me, and that doctor. For her, she will probably keep her antennas up for the next time it seems like a mother is trying to tell her something. For me, I realized that it will continue to be 110% my job to be the advocate for my children, and to trust my own instincts more than anyone else’s when it comes to them. I learned that when it comes to parenting, the onus is always on you; not the doctor, not the teachers, not anyone else. I will not have my children be victims of the bystander effect on my watch, and I’ll not second guess myself or apologize for going the extra mile to get to the bottom of something when it comes to my kids, even if it seems overzealous or silly, and even if I am wrong. To be wrong would be relief, not regret.

Over the last week, the kids have been on the mend and back to their usual selves. Calum’s been badgering me with questions of mystical places and creatures that don’t exist, and Faye has been drinking from the toilet with her plastic tea cup. It’s funny how quickly one’s focus can be shifted; The kids getting sick completely distracted me from my feelings of sorrow over our “new normal”. They both immediately required so much care and attention that I didn’t have the time or energy to worry about long term maintenance. I had bigger fish to fry and, now that we got over another little hump, I’m just grateful that we are no longer dealing with the added pressure of the virus they caught. All it takes in life is a shitty event to make you totally appreciate how easy the shit you were previously dealing with was. Next time I start feeling sorry for myself, I think I’ll ask God to give me diarrhea so that, once it’s over, I can go back to appreciating life without the added challenge of unpredictable bowels. Sorry, not sorry.

Calum has had one check-up this month in addition to his fever visit, and his counts were decent, even considering he has been fighting this virus. His hair is growing in, and it is so soft and fuzzy and getting thicker by the day. Over the next couple weeks we will hopefully have a good idea of how is body is adjusting to LTM and we are hopeful that it will continue to go well for him. Lately, I have begun to close our bedroom door a little further, worrying just a little less about what the night could bring and trying to get some good sleep.