We are about halfway through John Oliver’s Make-A-Wish trip, and it is even better than I had hoped for. We spent most of yesterday at the Nintendo Headquarters in Seattle, and it was a dream come true for Ollie. We were given a tour, hosted by the most fantastic group of employees who played video games with Ollie, and left with tons of swag. Ollie had a hard moment, and one of the employees who works on Pokémon rushed up to his office to get some cool Picachu toys. He spoke to Ollie with so much tenderness that I was flooded with appreciation for his compassion and patience and wanted to stop everything and tell him how much it meant to this exhausted mom. Most of the adults in Ollie’s life, including me, are constantly asking him to do things he hates, or doing something to him that causes pain.
Video games and the worlds they provide access to have become central to Ollie’s well-being. Among the many, many things cancer has taken, physical play and time with other kids have been ruthless. As the disease has invaded his body, atrophying his bones and muscles, leaving him with nerve damage and a drop foot, wiping him of energy (this is a kid who almost never needed a daytime nap, and now he spends more time sleeping than awake), Ollie’s choices of how and what to play have been limited. He can’t walk, so playgrounds are no longer an option; his tailbone is a primary source of pain, so sitting on the floor with his toys is mostly gone; he is so cautious of his noodles and g-tube that he feels most comfortable in a protected position in bed or on a couch. So we have turned to video games, and while I was skeptical at first, I now see how magical they can be. Ollie becomes engrossed in the various missions, problem solves, identifies with and loves the characters, and is distracted from his own limitations. His creativity and imagination are engaged and he feels proud when he achieves a victory. And they are a lot of fun for him. He has been able to play with other kids and his cousins via online games, giving him a little more social interaction. He is even able to convince me to play sometimes.
Games also expose his “areas of growth,” as we social workers like to call shortcomings. He has very little patience, and gets terribly frustrated when things are difficult; he hates to lose; and he often gives up in a fit of anger. This are hard moments for me, but also times for us to talk about things like perseverance and practice. I figure it is good for him to learn these lessons though a medium that he loves. But we still have a long way to go. He had a breakdown at Nintendo, becoming frustrated with a game he was playing, crying, and asking to go home. I simultaneously wanted to make him feel better, and ensure our hosts that they had exceeded our expectations and this behavior was entirely about Ollie’s own issues. He gets overwhelmed with a lot of stimulation (which I can relate to), and I think the attention, his own exhaustion and discomfort, and his natural impatience caught up to him. It’s been such a long week, with so much pain and anxiety due to the G-tube, and he has started to have new pains. We spent close to 10 hours traveling the previous day, pushing his body to its limit, and he started the morning by vomiting into the ice bucket in the hotel. We’ve also received some bad news (I’ll get to that in a moment), so I am sure my own anxiety and sorrow are seen and felt by such a perceptive little boy. I wondered if this was too much for him (of course, when the trip was planned, we had no idea he would have surgery less than a week before traveling to Seattle), and after returning to the hotel, I asked him how the trip has been. He said, “It’s been really great.” And I asked if he was glad we had come, and he said, “Really glad.” This is actually high praise – the kid is brutally honest (so, so brutally honest), so I have no doubt that he has had an amazing time. Make-A-Wish experiences are bittersweet – if a kid is having one, it means something has gone terribly wrong, and I have my own internal struggles about acknowledging why we are here receiving this once-in-a-lifetime opportunity. But we are so, so grateful to Make-A-Wish and Nintendo for taking great care of us, and finding something that is perfect for Ollie. He feels so special.
The dark cloud hanging over my head – darker than usual – started as we boarded our first flight from Birmingham to Atlanta. Ollie mentioned that his head hurts when he touches it, and as I examined it, I could see growth in the area that lit up on his last CT scan. Once I started to look closely, it seemed to bulge and I wondered how I had missed it. I felt the familiar clamp on my heart and knot in my stomach. I am prone to motion sickness anyway – a challenge for someone who loves to travel as much as I do – so I had to fight the urge to not throw up during most of the flight. Once in Atlanta, I called our doctor, and she said if it hurts only when touched, it likely does not require immediate attention. She gave me all the information about the neuroblastoma expert in Seattle, assured me we would be in good hands if we did need medical assistance, and made plans to examine his head first thing next week.
This likely means the cancer is growing, which means our current treatment is ineffective. I spent much of the day wishing to get the news that Ollie has an ALK mutation. This is a genetic form of neuroblastoma that is very rare, so unlikely, but there are additional treatments that have recently been shown to be quite good for this strand of the disease. It would give us more options. But unlike Ollie, my wish did not come true. I received a text message from our doctor that Ollie does not have the ALK mutation, and it felt like my last hope was crushed. The message came through just as we were getting into the limo to drive to Nintendo, and all I wanted to do was be alone and cry. Thankfully we had a 30 minute ride for me to rally, and the atmosphere at Nintendo provided a solid distraction. But I felt like I was engulfed in a thick fog, making it hard for me to think or breath or have a coherent conversation. The dark thoughts were strong. And today Ollie said his ribs and back hurt. Other spot that lit up on the scan.
The emotional heaviness of what we are confronted with, the arduous task of caring for a sick person, and the torture of seeing my son suffer on a regular basis are unbearable. Why can’t we just get a break? Why can’t the news be good? Why is my sweet boy inflicted with so much pain so often? Last night Ollie asked me if there is a chance the cancer can kill him, or if we had done enough to stop it. I lied and said I think we have done enough. I hate lying to him, and I am pretty bad at it, but I cannot be honest about this. I wish he could get a chance at good health.