One of Ollie’s favorite foods – watermelon
The other night when I was cleaning up an accident (Ollie has lost control of his bowels), he asked me if I ever wished I was the one with cancer and he was taking care of me. I told him I wished that every day, and how sorry I am for all the pain cancer has caused him. His reply was that some days cancer gets the better of him, but there are still lots of time when life feels normal. It is my goal to maximize the normalcy of life during this time. But cancer makes if very difficult. The hard truth is that even with the support of hospice, and all the medicines at our fingertips in generous doses, John Oliver will continue to suffer from this cancer in a million little and big ways. It is so unfair that we are not only losing him, but it is happening in a manner that distracts from the quality of the time we have. Currently he sleeps a lot, but also has periods of time when he feels well enough to eat, talk, and play. In fact, he can be quite talkative, especially in the middle of the night. He always tells me about his dreams, and they are often exactly what you would expect from an imaginative seven-year-old, and sometimes they are what you would expect from a person traumatized by cancer. These moments are so precious, and I wish I could freeze time and preserve that experience of just being with him.
I feel an enormous amount of stress and anxiety. Caring for Ollie at this stage is a 24 hour job with little time for rest, and even when we find rest, it is plagued by worry and fear. I am afraid of the course this disease will run – as his body succumbs, what new challenges and pain lie ahead? I am afraid of prolonged agony that we cannot control with medicines. Mostly I am afraid of living in this world without him. It is an impossible concept to imagine.
Waiting for radiation
Ollie’s primary source of pain, and it is a big one, is his left hip joint. Anytime he moves at all – changing a pull-up, getting into his wheelchair, being carried to the car, adjusting on the bed – he feels a lot of pain. The good news is it is only when he moves, so there are times when he is able to experience relief and actually feel pretty good, but unfortunately, we have needed to move him a lot in order to get his radiation treatment. Each morning the dread grows as we get closer to the time to leave. I try to make the move to the car as smooth as possible, even doping him up on morphine, but it always hurts. He cries from the moment I pick him up until I place him in his car seat. Once in the car, it takes some work to get him comfortable and adjust his legs to a position he likes – he still can’t move them, so when I am driving, he is stuck in whatever position he is in. He usually dozes a bit until we hit that first bump, and he cries every time we go over any bumps, which are countless on these terrible patched up roads for the 45 minutes drive to Children’s. I see a bump coming, I look in the rear view mirror, and I see him wince and cry. It is an excruciating drive. Then he has to be moved from the car to the wheelchair. The anesthesia team have been wonderful and sedate him while in his chair so the next couple of moves occur while he is in a deep sleep. He loves the magic milk that knocks him out, and I sometimes wish I had a little on hand for the drive. Once he is finished with radiation and back in the car, he usually wakes up enough to cry on the drive home, and we once again have to make the transfer from the car to the bed. I feel like I’ve been hit by a truck by the time we are home, usually around 10 am.
Thankfully Thursday was our last day of radiation. We also had to stop by clinic to get his counts checked. We sat in the waiting room for an hour before one of the wonderful nurse practitioners took pity and finally got us to triage for vitals and to a room for labs. More waiting to get the results, and he needed platelets, so more waiting for the blood bank to send them over. Waiting while he got the transfusion, and just when I thought we were finally free to go home, Ollie got a fever. More labs were drawn, and we had to wait for pharmacy to send over an antibiotic, and wait through that transfusion. All this worked out to an 8 hour hospital visit. It was torture because Ollie was so uncomfortable the whole time, and I kept thinking, this is not how I want to spend the limited time we have left. He has been running high fevers since Thursday causing a lot of achiness and heat. After consulting with hospice and our oncologist, it was decided the fevers may be a response to discontinuing one of the medications, a steroid, so we have started it back and are optimistic it will abate the fevers. I certainly hope so – he is pitiful when his temperature gets over 102.
But in the midst of our worst nightmare, we have so much for which to be grateful. It truly makes these difficult days a little more bearable. The meals, lawn care, help with our Disney trip, the Glow Parade! All of it takes away a little worry and allows me more time to focus on Ollie. I believe in the power and necessity of community. Our lives are enhanced when we are connected to other people, and I have never felt that more than these past couple of weeks.
And tomorrow we leave for Disney! I have been holding my breath all week, just waiting for something to intervene, and those pesky fevers had me very worried, but it looks like we will make the trip. So many people have donated money, resources, and Disney connections, and we want you to know we could not have done this without that help. I know the trip will be bittersweet, but it is a special experience for those of us who want to give Ollie a bit of childhood joy. We are driving down in an RV so he can comfortably make the long trip and have a pretty spectacular trip planned.
Here’s a story about the tremendous love we were given by Montevallo: http://www.abc3340.com/story/25971378/hundreds-reach-out-to-child-battling-cancer
Getting ready for the glow parade
Waiting for the glow parade