Here We Go Again

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"

I Got A Lot Of Jokes

The first joke my daughter ever learned was "Why did the girl bring toilet paper to the party? Because she was a party pooper!" She was 3 or 4 and she told it to everyone, multiple times. 

Last summer when my daughter did radiation the first time, the child life specialist found out that she liked jokes and brought her a special notebook where she could write her jokes along with a joke book. My daughter's third grade teacher apparently taught her how to make up jokes, and she does it all the time. At every appointment, she asks everyone if they want to hear a joke. What follows is a mix of puns, dad jokes, and stupid riddles. I think she likes getting a laugh out of people. 

Here are 2 jokes my daughter has wrote down in her special joke book last summer. I think she came up with these herself:

• What did one grain of wheat say to the other on the Ferris wheel? This ride is toast-ally awesome. 
• What did one cheese puff say to a super hero cheese puff? You're very powderful!

(I'll have to get her to write down some more.)

Before her surgery, I made a Facebook post requesting jokes and everyone and their mom decided to send us joke books. I don't have the heart to tell anyone just how many we got - but it's more kid joke books than a normal person should have.

My favorite was all the individual jokes and videos people sent us. We went through them all one night before surgery when we were feeling anxious. I told her more after surgery when she would have moments of alertness. It helped get a laugh amid the pain she was feeling. 

When the neurosurgeon came by for a final check before releasing us from the hospital, he got two jokes. I hope all the hospital staff went home thinking about that kid who told all the jokes.  

Last week one of my students told me they were going to be traveling to Florida for medical appointments at the Mayo Clinic. I don't know what it is for, but traveling for medical testing is never great. I told her a little about our traveling and then offered to share some of my daughter's jokes. It felt good to pass them along to someone else. 

People always ask if they can do anything for us, and while we don't need any material things, jokes, memes, and funny videos are always appreciated. Laughter is the best rebellion. 

A Silly Song The Kids Are Obsessed With

Peace, Hope, Strength

I've written about prayer and religion here before. It's kind of inescapable when your kid has cancer and you live in a small town. I have so many messages from people praying for her and us. Multiple coworkers have told me that they have their churches praying for us. Teachers at my daughter's school had a prayer group the night before her surgery and wanted to know the exact time her surgery was so they could say a prayer then too. Family members, internet strangers, people at the hospital. I just say thank you.  

My own feelings about it are complicated. I want to believe that there are unknowable things about death, souls, the universe. I like the idea of loved ones who've passed sending signs. But, I have a hard time with the proscriptive rules of Christianity, the saved versus not saved dynamic, that saying these magic words will save your soul, and all the racism and sexism in the church's past and present. The idea that the culture or religion you are born into would prevent you from a heavenly eternity never made sense to me. The idea of God in my mind seems bigger than all of these human rules, has always seemed bigger than that to me. A friend of mine said maybe it's not important whether we believe that Jesus was God or not. We can instead focus on his message of loving others and taking care of the poor, and it made me feel better coming from someone who seemed much more religious than me. So, all that is to say, if praying helps others feel like they are doing something, that's great I guess. None of us can have too many good words for us out in the universe, but I also don't feel any need to ask for prayers. 

During my daughter's surgery though, I had so much anxiety that I started reading some Bible verses. Surely if this many people are finding comfort in prayer and the Bible, then maybe it will work for me. I googled things like "Bible verses to help with anxiety" or "Bible verses to help with grief." I know that's not the best method, but it's what I had to work with at the time. I don't really find comfort in random Bible verses taken out of context though, so then I bought a devotional e-book specifically about getting through hard times. It didn't help. 

The one book in the Bible that I did read a few times while I was in the waiting room was Philippians. It is one of the prison epistles written by Paul when he was under house arrest in Rome, bound in chains with little food. The letter is to a church that he helped found. In chapter 4, verses 6-7, Paul writes: 

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Then later in verses 11-13: 

"I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength."

I suppose this one stuck with me because of the idea that even in suffering, there can still be peace. And I think maybe that is something I have been trying to find or at least hope for at the end of all this. That I could still find peace through it all.  

A Peaceful Song

The Head and The Heart, "Let's Be Still"

Better When I'm Dancin'

My daughter had her second resection on March 3. I have a lot of complicated feelings that I am parsing through, but to keep things simple, she is ok for now. Recovery has been similar as the last time, though her cognition hasn't been affected. Instead, she is more unstable walking and has some coordination deficiencies on her left side, but we are working through it. She has a walker that she used in the hospital and yesterday around the house. Today we encouraged her to try getting around without it, and she is doing ok. Moving slower, but not falling. This time the incision was through the back left-side of her skull and the base of her neck, so she has more muscle pain and neck stiffness as she's healing. Again, we are working through it and making progress little by little. 

All of us are grappling with our feelings in a different way. My daughter is on dexamethasone, a pretty potent steroid, to help with swelling. She was on it last spring too. It makes her very emotional. On the way home from the hospital, she started crying about our dog that died a year and a half ago. She also has big feelings about losing her hair (which I dyed purple on the ends to help her feel better), being in pain, and missing out on things at school. 

My younger daughter has been extra clingy with me. I was up way too late last night catching up on my Bravo shows, and she came out around midnight wanting to cuddle and sleep with me. She climbs on me at the dinner table and wants me to carry her around constantly. 

My husband and I vacillate between snipping, crying, and forgiving. We do ok I think with giving each other space for our anxiety-induced idiosyncrasies and balancing the load of caregiving. We alternated nights at the hospital and coming home and playing Barbies with our youngest. He makes spreadsheets to track medications, takes tons of notes during appointments, and goes to pick up food, prescriptions, and whatever else we need. I research, keep track of the schedule, communicate with teachers, social workers, and doctor's offices, and try to calm everyone down when they are getting too emotional. 

I've been trying to be present during the sweeter times together, but it's all kind of tinged with sadness. The girls sent silly videos to each other while the oldest was in the hospital. It's always cute to hear them laughing together, but also a bit heart breaking not knowing how long it's going to last. 

Last night we were on the deck watching the sunset. We put on a playlist that my daughter's Girl Scout troop made for her, and she proceeded to scream/sing "This Girl is on Fire" at the top of her lungs, and I struggled to keep it together. We then had a mini dance party on the deck. One kid swaying around like a ballet dancer and the other holding on to her walker and shaking her butt. 

I'm sure we all need therapy, but with what time? We have 3 appointments in the next two weeks, and then it's daily radiation again until April 17. We're just going to have to get by haphazardly with forgiveness, music, and sunsets on the deck for now. 

A Deck Dance Party Song

Megan Trainor, "Better When I'm Dancin'"