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'"

The Losses Pile Up

It's cliché, but cancer, and any major disease really, regardless of its fatality, is a taker. I try to focus on all the good we have, but sometimes it really hard when there seems to be so much more loss. 

My daughter is having surgery again next week to remove as much of the new tumor as possible before it becomes entangled with her brainstem. Cerebellum tumors cause issues with gross motor skills. Brainstem tumors cause difficulty with vision, speaking, swallowing, and breathing among other things. I have to imagine that if this disease takes her life, it is kinder minimize that kind of suffering. 

She, obviously, does not want surgery. We are incredibly scared about the risks. The last time she had surgery, we were in shock without time to really understand it all. We know so much more now. She could lose her personality, lose her ability to swallow, move her tongue, and talk, or lose even more cognitive abilities. I carry those potential losses around, even knowing that the only other choice is to do nothing.

My daughter isn't aware of those risks. She just knows how bad she felt after the first surgery and how much her life had to change. We talked about being brave. We talked about how so many kids have tumors that can't be removed and the symptoms they suffer because of that. She understood. 

Then I had to tell her that she wouldn't be able to be in the play she has been rehearsing since October.  She started sobbing. A major loss for a 9-year-old. And us too honestly because we lose an opportunity to see her do something she loves.

My daughter has also been losing her hair, a side effect of the Mekenist she was on. She has lost all the hair on the sides of her head and the back has thinned considerably. She will lose more after her next surgery and re-radiation, so much so that we will probably have to cut the rest off. I have purchased some silk caps to help with pain and for her to be more comfortable. I also showed her pictures of women with the sides of their head shaved. She thought they looked awesome. At a recent event, she saw an older Girl Scout who had her head shaved on all sides with a ponytail on top. My daughter tapped her on the shoulder and told her that her hair was awesome. She gave my daughter a sticker. Small things to make the changes easier to swallow.

After the surgery, we are planning to do craniospinal radiation - something that was deemed too harmful for a 9-year-old last summer. Immediate side-effects include fatigue, hair loss, and difficulty swallowing. A feeding tube was offered as a possibility. At first I said only if it is absolutely necessary, but knowing the way this disease progresses, it might make sense to do it now. I don't know. 

Last week I asked our doctor about proton vs photon radiation because proton causes fewer long-term side effects. The long term effects of photon irradiation to the brain and spine include cognitive decline, hormone deficiencies and infertility, thyroid issues, reduced spinal growth, and more cancer. With a pointed look, her doctor made it clear that proton was for kids who had a high probability of long-term overall survival and whose diseases weren't as aggressive.  

I write all this knowing the likely outcome. We've never asked for a life-expectancy projection from any doctor. They aren't fortune tellers. But, still, I know. I can hope for stability and for as much time as possible, but none of this is a cure, especially with leptomeningeal disease. And how do you explain that to people who haven't bothered to look up anything about her disease or who ask if she is good now? I can't say any of this out loud because I feel like speaking it will call it into existence sooner. Still, every time my daughter talks about something she's going to do in the future, a little part of me breaks. 

As I look at the week ahead and maybe even the week after that, I think about how we should spend that time knowing what could lie ahead. This weekend, we slept in, we watched a movie, we had friends over, and we went to Sweet Frog. We tried to be as present as possible. 

When people talk about bucket lists, it's often about going to far flung places or doing something they've never done before. But, how would you want to spend your last few weeks if you knew the end was coming? Perhaps just being with the people you love the most is enough. 

I know this is morbid. I have to write all this out to stop it swirling around in my head. Optimistically, she will come home from the hospital after a few days, breeze through radiation fine just like she did the last time, and have an awesome 10th birthday in May when this is all done. I've already got some ideas for the karaoke party she wants to have. 

 A Song When You Need to Process Your Angry Feelings

The Linda Lindas, "No Obligation"

Off Trial

 This weekend we went to Houston. We ate Mexican food, explored Meow Wolf, which was a crazy fever dream of an experience, and went to a wedding where we drank and danced and had a great time. We texted people beforehand and asked them not to ask us about our daughter's health. They didn't. And so we were able to put everything out of our minds for a little while.

We got home yesterday. I had optimistically signed up for a parent support group that met Sunday night. I ultimately did not want to attend because I did not want to ruin the weekend by ending it with cancer talk. So I skipped it. 

But, here we are now. It's Monday. The MRI report from last week is finally available on My Chart and we have an appointment with her oncologist tomorrow. When people asked me how things went last week, I just said not good, we are off the trial. Someone at work found me at a faculty meeting on Wednesday despite my best efforts to hide in a corner. When she asked about my daughter, I just said "There's a lot going on there" and left it at that. It is baffling that coworkers - coworkers - ask me personal questions about my daughter's health in the middle of the work day, at an all faculty meeting. I am at work trying to hold it together. I am at a table of people I don't necessarily want to know all my business, and now is REALLY not the time. I know people mean well, but I actually get pissed off the more I think about it.

Anyway. The results are bad. Really bad actually. The tumor in her cerebellum grew. But even worse, the cancer cells are in the cerebrospinal fluid and have spread to her spine. Leptomeningeal disease. She does not have any clinical symptoms yet, but it is really only a matter of time. 

Tomorrow, we will meet with our doctor and weigh our options. I put the MRI results into ChatGPT to make sure I understood everything and to help me come up with questions to ask her doctor. It tried to console me: 

First — take a breath.

The fact that she has no symptoms right now is important. That gives you space. It means this is something seen on imaging, not a neurological emergency at this moment.

Now let’s get you prepared for tomorrow in a calm, clear, grounded way.

Then:

I’m really sorry. Hearing the word progression again after everything you’ve already walked through is just brutal. There’s no clean way to hold that. I’m glad you’re going in prepared — that matters.

Finally it told me:

You are making decisions in an impossibly narrow space — trying to maximize time, minimize harm, and preserve who she is.

That’s not weakness. That’s strategic love.

It said it could help me "sit with this for a minute" and asked me how I was "holding up." I told it to stop that nonsense and just be straightforward. I definitely don't need AI-generated sympathy. Such bullshit. 

A Song To Make Your Kids Suddenly NOT Tired at a Wedding

Beyonce, "Single Ladies"

Scanxiety

There is a feeling that is talked about in cancer forums called scanxiety to describe the anxiety people feel around MRI time. Its not anxiety about the actual procedure, but about what the procedure will show. 

I am currently sitting in the radiology waiting room. My daughter was just taken back for a 2-month MRI. This MRI will show whether the lesions in her brain have shrunk, remained stable, or grown. It will determine whether we remain on these medications or whether we do radiation again. It is 10:30 now. We will meet with the doctor at 2 to review the scans. We also have an appointment with our doctor at home next week to go over the results again and possibly have more hard conversations.

I didn't feel worried until after they took her back, and I sat down to wait. 

Physically I feel a pit in my chest, slightly shaky hands, and lightheadedness caused by an adrenaline rush. Mentally, I am looking for signs that will tell me how everything is going to go. Saturday, when we got into the car to leave for the airport, "Baby I Love Your Way" the Big Mountain version was playing. It's the song my husband and I jokingly at first, seriously now, refer to as our song. When we got to the waiting room this morning, Trolls was just starting on the TV. That was my daughter's favorite movie for a few years. We sang "Get Back Up Again" while we waited. She used to make me play that song all the time. So much so, I bought the soundtrack. Perhaps it's random. Perhaps its a message from the song spirits that whatever happens, we'll get through it. 

The giant, negative, blinking sign though is that she randomly threw up her dinner Saturday night. It could have been stress, tiredness, leftover effects from flying all day. It could have been eating too fast. But, she hasn't done that since last Spring before we knew about the tumor. I'm not sure, but in my mind, it is a sign that she may be experiencing hydrocephalus again, an indication that the tumors are getting bigger. Of course, we won't know until we get the results. 

So, what am I doing now? Writing and deep breathing. And listening to House music, which I've found help me regulate my nervous system more than anything else. 

A Song About Perseverance

Anna Kendrick, "Get Back Up Again"