In the hospital before surgery and during recovery, my daughter kept telling the nurses that she knows how things work, she's done all this before. At the pre-surgical appointment, when the doctor was talking about where her incision was going to be, she showed him all of her other scars.
Even though it's all a familiar process - surgery, recovery, radiation, clinic appointments - things seem to get harder the more we do them.
My daughter had to get an MRI last week before starting radiation. A brain scan usually only takes 30 minutes, so she does them awake. It's much quicker when there is no anesthesia. However, that means my daughter has to get an IV while she is awake. When I told her she had to get an IV, she started crying. I hugged her. Told her it sucks and isn't fair that she has to go through this. I got out her iPad and we started listening to music. She wanted to listen to 1989. So, we sang and waited for the imaging specialist to be done with the patient before us and then come over to put in the IV. She held her arm still, gripped my hand with the other, squeezed her eyes shut, and said "ow ow ow" until it was over. As he put the tape over her arm, "Shake it Off" was playing.
One of the first times they took blood at the oncology clinic, the nurse couldn't find a vein. They called in another nurse, who tried again, and caused blood to spurt down her arm. Finally a third nurse was able to do it. Through it all, my daughter practiced breathing, listened to music, and gripped my hand. Despite this experience, she does ok with blood draws. She doesn't like them, but they are usually quick. Sometimes I talk about what we are going to do that weekend to distract her. Other times she just wants to get it over with as fast as possible. I know grown men who faint when they have to get blood drawn. Even though she pushes through, the little traumas, the IVs, the gross medicines compound and things that were easy before get harder.
We start radiation again this afternoon. If I go by what the doctors say, it is going to be worse this time. Instead of focal radiation, they are doing the entire brain and spine. Since coming home from the hospital, my daughter has had these stickers with green crosses on her ribcage. We were told not to take them off or wash off the marks because they need them to be able to line up the radiation machines. She got a new radiation mask made - one that covers her shoulders. I hate that beating this disease back requires poisoning and maiming her body like this.
I really felt like that after surgery, and questioned whether the pain was worth it. When the surgery was over and we were waiting to go see our daughter, the neurosurgeon met with us in a private family room. Sometimes the doctors will just come into the waiting room and meet with parents there. We were taken to a private room, so we knew it wasn't going to be good news.
The doctor told us they were only able to get about 60-70% of the tumor. The rest was spread out into healthy brain and intertwined with her cranial nerves. The doctor described it like chewing gum stuck in your hair. While he was talking, I kept staring at his cowboy boots. What kind of brain surgeon wears cowboy boots while literally holding people's lives in his hands? What is the psychology behind that? He told us that the hardest thing for a surgeon to do is stop operating.
I bring that up knowing that he is a good surgeon. There are YouTube videos of him being interviewed by local news and patients talking about how he saved their lives. I am glad he worked to conserve my daughter's brain function and her mobility. I am glad that she is now back at school, walking and talking like normal. But at the time, I also wondered why we did surgery in the first place. Why not just go straight for radiation and not put her through the pain of this. I know now that radiation can cause more inflammation in the brain. Radiation can be more dangerous when there is already hydrocephalus, leading to seizures or neurological complications. Many families wish their kid's tumor was operable. As we are finding out, removing it doesn't mean getting rid of the disease.
I keep thinking about the part of the tumor that is left in her head. In my imagination, it is like Venom from Spider Man - this black, crackling mass, spreading out and taking over its host body. I hope that radiation will kill the rest of it. That it will slow the effects of LMD. That she will continue to have a good quality of life. However, for the first time, the clinical notes clearly say: "she has progressive, metastatic disease and this portends a poor prognosis. There are no curative options."
Another DMG/DIPG parent said that they know the statistics, the overall survival with this disease, but they don't know the future for their child. And I keep coming back to that. I know, but I don't know.
When Your Kid Decides She's a Swifty
Taylor Swift, "Shake It Off"
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