We did not take a real vacation this summer, and we could really use one. But, school starts and work continues, and so we go on.
My daughter has not had many side effects during treatment, but she has been really tired this week and has been less hungry overall that usual. She did not eat much dinner on Sunday night, and Monday she got dizzy and fell down, hitting her lip on the fridge when she was trying to get some orange juice. She stayed home from camp Monday and Tuesday, but went back today.
Yesterday afternoon we met with Make-A-Wish, which seems like a right of passage for parents of kids with cancer. My daughter wants to "go on a cruise to multiple islands." When the volunteer asked for a non-travel wish as a back up, my daughter couldn't think of anything. When a shopping spree was proposed, she said she already had enough stuff. We decided that her back up is a mini art studio in her room.
It feels weird accepting gifts like this because we can afford to take a cruise. We can afford to buy our child whatever she wants. But, I guess it is the fun of allowing her to pick something and having it come true. And, it will be nice to let someone else do the planning.
In the meantime, I've been researching clinical trials. We have to wait until after her follow up MRI in September to see what she is eligible for. CAR-T cell trials would require us to be in another city or at another hospital for a month to 6 weeks. The timelines and requirements are different depending on the trial, but basically she would be in the hospital for at least a week, and then we would do follow up appointments weekly for a while. There are trials are in Seattle, San Francisco, Houston, and Memphis. Those are all plane flights away, and we would have to live there for however long until the appointments get spaced out enough that we could go home. It is overwhelming thinking about the logistics of how that would work. But, families with kids the same age or older than mine are making that choice for hope of a treatment that works.
There are 2 children who are on a CAR-T trial at Seattle Children's. They both have DIPG and have survived on trial for 4 years when the average survival is a year after diagnosis. However, they have to get T-cell treatments every 3-4 weeks. One family flies from Vermont to Washington every month for treatment. That is an extra $1,000 every month for just plane flights, not to mention the logistics of flying with a sick child, taking off work, and leaving other children at home. The commitment and requirements of that astounds me, and I wonder what that would look like for us.
There are other trials for ONC 201 and 206 that would require less hospitalization and be within driving distance. There have been some "successes" with those drugs here and here. But, when you see those stories, and then look them up to see where those people are now, they are usually dead. So, it may work for a few years, but cancer, especially brain cancer, is tricky and mutates and treatments stop working. Tumors grow back and can't be surgically removed. And for every "success" story, there are many more stories of people for whom treatments did not work or who were unable to get on a trial at all. Just yesterday, this story of an actress named Kelley Mac who died of DMG was all over my new feed.
School is starting next week, and I want my daughter to be able to attend as normally as possible. But, is it that really a priority when her life is at stake? How much do we balance normalcy and the need for treatments that would extend her life?
We recently attended a local baseball game curtesy of the Pediatric Brain Tumor foundation. Both of my kids were taken to the field with the team for the national anthem, hamming it up like usual. At the end of the game, we went onto the field to light lanterns for families like ours and to watch fireworks. The first family on the field was a family who had lost their son to brain cancer. The announcer talked a bit about their family and their son. Then families with children currently in treatment or who have survived brain cancer came onto the field, followed by support people like medical professionals, friends, an extended family. We were standing in the in field near second base turning around and looking at all of the lights. People in the stands had their cell phone flashlights on. My daughter started crying, I started crying. It was a lot. Later, my husband asked her why she was crying and she said that she was so sad for the family that lost their son but also happy that her tumor had been removed.
We live with the things that we don't tell her.
A Song for being Happy and Sad at the Same Time
Swedish House Mafia, "Heaven Takes You Home"
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