Over the course of Gavin’s treatment, you’re going to come into contact with hundreds of nurses, doctors, and therapists. And you’re not going to get along with all of them.
I have decided that in the interest of fostering understanding between parents and professionals in the world of pediatric oncology, it should be a necessary component of these professionals’ training that they actually care for a child with cancer for a period of several weeks. I mean, 24 hours a day, 7 days a week, get up at the crack of dawn, go ’til you drop care. This might help some of these individuals to understand what we, as parents, go through in the months and years of our children’s treatment. Perhaps they could then understand that so much of the advice that they offer is meaningless or impossible to apply. Perhaps then they could have more sympathy with how difficult it can be to get a toddler to eat 1,000 calories a day and drink more than a litre of fluid, or collect all the urine from one day from said toddler. (That’s right, I said pee.) Perhaps if they ever had to pin their child’s arms to his sides while he screamed and shed hot tears as an NG tube was inserted, there might be more sympathy for how hard it is to have one. Maybe if they had to chase an active and curious toddler around the house and try to get him to HOLD STILL to do blood pressure reads. On top of those things, they would have to hold this child’s hand during ECHOs, ECGs, EEGs, CTs, X-Rays, and GFRs. They would have to cajole and threaten to get to appointments on time. And, they would have to feed, dress, change, bathe, play with and socialize this child. Sounds like a good job, huh?
Don’t get me wrong. We have been fortunate with so many of our doctors and caregivers. Many of the doctors who have been with us on the journey truly love Gavin and have given us nothing but incredible support. There were times that certain doctors came in from home in the middle of the night to be with us. There were times that they didn’t leave until 3:00 in the morning. And our fellows worked their overnight on-call shifts without complaint, though it often meant being sleepless for more than 24 hours.
Over the course of our inpatient stays, there were only ever a few nurses who really got under my skin. I know that a couple of our nurses cordially disliked me, but most were too professional to really let on. When you are sleepless and frazzled, angry and emotional, you are not the most likable version of yourself ever. The nurses, though, get it. They stay on their feet for a twelve-hour shift, changing diapers and cleaning vomit the whole time. They pin the kids down to insert NG tubes and hold their hands during pokes. They remove tapes and change dressings. When the parents can’t be there, they are, sitting at the bedside and feeding, changing and playing with these kids. Many of our nurses gave Gavin so much love, and gave me a shoulder to cry on or, at the very least, a little bit of adult company in an otherwise toddler-filled day. I am eternally grateful to these women (yes, ALL of our nurses were women, bar one) for having the courage to work such a tough job and for doing it with a smile. I have a special little pocket in my heart where I keep the nurses of 8B, and when I think of them it is with love and enormous respect.
At our last clinic visit, I had an encounter that sparked this little rant. I was feeling vulnerable and did not appreciate some harsh and insensitive words that were sent my way. I became defensive, which didn’t help. I’ve shared the details with friends and got the sympathy I needed, so I don’t feel it necessary to repeat the conversation here. There was an insinuation that I was being selfish in the decision-making process regarding Gavin’s continued health.
Let me just state for the record: I do nothing without considering Gavin’s best interests. He and I are rarely apart. I know him better than anyone. Through this process, I have fought for him, nourished him, cried for him, prayed for him, stood up for him, and loved him. More than anything I have loved him. I still dream big dreams for his future. I believe in him, in his continued ability to rise above and to live a normal and happy existence, free from hospitals, drugs, lines and tubes. I must not only believe that, I have to push for it. To do otherwise is pure cowardice.