We came home from the beach on a Sunday. Monday immediately felt lighter. Everyone was in a good mood, my oldest was eating better and had more energy. On Tuesday she had a pediatrician appointment and then we went to the library and got smoothies. Wednesday my oldest had a friend over and we went to see The Sheep Detectives, gorging ourselves on candy and popcorn. Thursday we planned to just chill and catch up on chores. It was a good week. Things change so fast.
Thursday afternoon, my daughter started complaining about her legs hurting a bit, just the upper glutes, and she started walking funny. Two hours later, she complained that her eyes were hurting when she opened them, and she had a headache just above her eyebrows. I texted my husband who was out with friends to be prepared to possibly take her to the ER. I got my daughter into bed, and I put a cool washcloth over her eyes. She fell asleep, and I packed an ER bag just in case.
The next morning, I had to help my Girl Scout co-leader deliver toys we had collected to the children's hospital. Originally, I was going to take both kids with me so they could be part of it. But, my oldest still wasn't feeling up to it. Her headache was gone, but her legs were still hurting. While we were gone, my husband called the oncology office, and they recommended taking her in to the ER at the same children's hospital where I had just dropped off toys. My husband took her in and I tried not to cry in the car on the way home.
I texted my mom, who drove the 3 hours down from VA to watch my youngest, and I met my husband and daughter in the ER right after the MRI. The scan showed a brain bleed, new growth of her cerebellar tumor, and increased leptomeningeal disease (LMD). Because they only scanned her head, we have to wait until next week to see what is happening in her spine. However, the symptoms she is experiencing could be from LMD. LMD is when cancer spreads to the leptomeninges, the membrane that covers the brain and spine. Cancer there causes a build up of pressure, vision changes, leg and back pain, and seizures. The doctor also said the headaches could be due to the blood in her ventricle blocking fluid flow. I spent the night with her in the PICU. In the morning, neurosurgery decided there was no intervention needed at this point, so we came home with some steroids and that's it.
We have a virtual visit tomorrow afternoon with her oncologist to discuss clinical trials, but I also suspect it is to have hard conversations about the future without my daughter in the room. I'm not sure any of the trials available to us are worth the travel, the side effects, or being a pin cushion for science, especially if they are phase I trials just testing for safety.
The last few days, I've also been feeling like my youngest is getting lost in the mix. I optimistically took her out of daycare for the summer, but it's making everything a bit harder. She wants to swim and play and be a kid, and my oldest gets really tired and generally wants to read or nap. If my youngest were going to daycare everyday, I know she would feel left out of imagined fun she thinks we'd be having without her. Last night after a lot of 5-year old emotions, she told me she was sad that her sister wasn't playing with her anymore and that her sister just wants to be in bed chilling. I had to explain that her sister isn't just chilling in bed, that she is actually really tired. My youngest asked if it was from the radiation. I said yes.
Even though my youngest is only 5 and hasn't even started kindergarten yet, she is picking up on a lot of stuff. She recently watched a movie where the main character's brother died of cancer. Surprise cancer plot lines have shown up in a lot of books and movies recently. Maybe it has always been there, and I'm just more aware of it now. Anyway, because of that, she is worried that her sister is going to die. She asked me if her sister is going to get better, and I had to tell her that I don't know.
All of this has me reaching for some kind of life philosophy to make me feel better. I saw a video with a biologist talking about how many factors have to go right to create a healthy baby and for that baby to grow and become a healthy adult. It's a miracle that any of us are here. There is no great system of fairness or unfairness in nature. Things just happen, and sometimes you don't have the ability to change it. So, you have to learn how to live within it and be thankful for the good fortune of being alive here and now.
A Lullaby
The Beatles, "Blackbird"
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