Liminal Spaces and Magical Thinking

In the last two months, I've found myself doing a lot of magical thinking - framing my reality around beliefs that I know are temporary. After surgery, we existed in a reality where our kid was recovering well and would not need more treatments. While logically I knew there was a possibility that she would need radiation, I chose instead to believe that she wouldn't.

Then we found out that she has an aggressive cancer for which there is no permanently effective treatment, and we had to come to terms with that. While logically I know that her tumor will likely regrow, I'm choosing to live in a reality in which it won't. 

She might have metastatic cancer. But, the negative lumbar puncture has allowed me to continue living in a world where she doesn't, at least until tomorrow.

The in-between times, the times where we don't have all the information yet and are waiting for appointments or test results, feel like living in a liminal space. I'm in some kind of temporary waiting room that I've constructed to keep us all safe until a new piece of information pushes me out into the harsh glare of reality. After a few days of reality, I begin to mentally rebuild the safe room again. 

This has also led me to focusing on the favorable details of her disease and blocking out the unfavorable. The tumor was circumscribed, it was operable, they got all of it, the spots on her spine are so tiny the oncologist didn't initially recognize them as disease. Then I ask a dumb question like how quickly do aggressive brain tumors typically regrow after radiation - 9 months was the answer - and my safe room comes tumbling down again. 

I've been seeing this kind of thinking in the parent support groups. Some people think that cancer is caused by parasites and that ivermectin will cure it. Another person posted a video of a guy claiming to have cured his DMG through meditation and the will power of his mind. (Some googling about that guy led me to a pretty harmful cult group that convinces people to forgo modern medical treatments and instead train their minds to believe they aren't sick.) It is easier to believe that doctors are in the pockets of drug companies and are lying about serious diseases than to accept that cancer often happens randomly without clear genetic or environmental causes, and that sometimes there isn't a cure. 

In my most recent bit of magical thinking, I decided that maybe I was a witch or a shaman in a past life, which has given me prophetic dreams in this life. I know, I know, but also hear me out. 

When I was pregnant with my daughter, I had a dream that an old lady entered my body and became my baby. It was one of the realest, weirdest dreams I've ever had. In the hospital before her craniotomy, nurses kept commenting on how mature my daughter is. One nurse said she was sure that my daughter had been here before. I told her about my dream, and the nurse said it gave her chills. 

A week ago, there was a really strong thunderstorm in the area. It was around midnight or 1 AM, and the thunder and lightening sounded like it was right over my house. I was in and out of sleep and had a waking dream that the lightening somehow cleansed my daughter's body of cancer. 

Magical thinking? Sure. But also, I get to live in a room where lightening healed her until it is proven otherwise. 

A song about dreams

Fleetwood Mac, "Dreams"

A Letter into the Void

Around the time I first learned my daughter's diagnosis, I was sitting on the couch in the living room talking to my mom. The conversation turned to politics, and then all of a sudden, I found myself angry and crying about the cuts to federal cancer research grants. It was a very emotional time. 

I'm not crying about the budget (much) any more, but I am still really pissed off about it. And mostly I'm pissed off because these cuts are so needlessly cruel and unnecessary. 

Sometimes I draft social media posts in my head, but I never actually publish them. I don't want to deal with the comments that come after. One about cancer funding has been rattling around in my head for a while. Then a friend posted an article about cancer funding cuts, and I just couldn't stop myself. 

After making the Facebook post, I realized that yelling at my friends who mostly agree with me was unlikely to do anything. So, I wrote a letter to my senators and sent it to them. Did it make me feel better? Kind of, but also not really. They are still going to vote in support of these heinous budget cuts. We do what we can. 

Here's the letter anyway. 

Dear Senators Tillis and Budd,

I am writing to express my concern about the proposed spending cuts to the National Cancer Institute and the removal of funding for pediatric cancer programs like Give Kids a Chance in the “One Big Beautiful Bill.” 

In May of this year, my 9 year old daughter was diagnosed with diffuse midline glioma (DMG), an aggressive form of brain cancer that makes up roughly 10-15% of all pediatric brain tumors. So far, she has received excellent care at Levine Children’s Hospital here in Charlotte. She will start radiation next week and will get treatment every weekday for 6 weeks. After that, our only treatment option lies in experimental drug therapies, available only through clinical trials. Without continued investment in research from the federal government, these therapies may never become available. Because of the lack of available treatment options, fewer than 10% of children with DMG survive more than two years. 

Nearly 15,000 children are diagnosed with cancer annually, yet pediatric cancer receives just 4% of federal cancer funding. Cutting this lifeline will halt the progress that is being made in the fight against childhood cancer and strip hope from families like mine across North Carolina and the nation. 

You both have consistently championed pro-life legislation. In your commitment to protect life, please remember the children whose lives are lost fighting this horrible disease. Funding cancer research is not a partisan issue. It is a moral one. We have the best cancer research hospitals in the world, but they cannot continue to save lives without the resources to innovate. 

I ask you to oppose the cancer research funding cuts in the current budget proposal and support the full funding of pediatric cancer research programs. Do not let loyalty to a party undermine your commitment to protecting the lives of our children. 

Sincerely,

The Mom

A song for protests

Beyonce, "Freedom"

A Diagnosis

The pathology results arrived in My Chart the Friday afternoon before Memorial Day. I knew I shouldn't open them. I knew I should wait for the oncologist to explain everything, but I didn't. 

The tumor's mutations were:

• H3K27M
• FGFR1
• NF1

The diagnosis: 

• Diffuse Midline Glioma

Google prognosis: Poor. Median survival less than a year. Put the results into AI. Same thing. Aggressive, likely to return, poor prognosis. H3K27M is associated with worse outcomes. Median overall survival is less that a year. 

I knew for a week before I told anyone else. My husband wasn't ready to know, and I didn't want to talk to anyone else about it before we could discuss it together. My husband would randomly find my crying in the bathroom. My kids would see me crying in the car. I did my best not to spiral, but I couldn't stop myself. I googled everything about DMG. I read academic articles about it. I joined Facebook groups about it and read through Reddit posts. Instead of working, I spent an entire day researching, reading about people's experiences, and spiraling. 

A few days before our follow-up oncology appointment, I told him that I had to tell him. I couldn't carry this by myself anymore. It wasn't fair and he needed to know. I was glad we had that conversation because the oncologist called us with the results the next day. 

Since then, I've come to realize how little anyone knows about this kind of cancer. H3K27M was only discovered in 2012. DMG became a separate classification from DIPG (Diffuse Intrinsic Pontine Glioma) in 2016. Gross total resection of DMG is rare. It is either diffuse in the brain or deep in the midline structures, making removal difficult if not impossible without seriously damaging healthy brain tissue. We are very lucky hers was in an operable location, that her surgery did not lead to lasting damage, and that they were able to get all of the detectable traces of tumor. The median survival is not accurate in her case.

At this point in time, there are no medications to treat DMG because no one's tumor is exactly the same. ONC201, which targets H3K27M, is up for FDA approval in August, but right now it is only available through clinical trials. ONC201 has given people longer lives and reduced tumor symptoms. I am hopeful it will be available when she is done with radiation. Inhibitors for FGFR1 are also only available through clinical trials, but there may be treatments for NF1 we can do. Mainly, our options are radiation and then maybe a clinical trial IF she qualifies. Though without active disease, it isn't likely she will. Aside from chemo, which doesn't typically work for this kind of cancer, our other choice is to do nothing, which means the tumor is likely to return more quickly.

From here, the doctors really don't know how her tumor will act. Will it come back in a few months or will it be years? Will it come back in the same spot or will tumors grow in other, less operable places?

On top of all that are the spots on her spine, so tiny that they barely register on an MRI. Are they cancer or not? The MRI says likely. The lumbar puncture was negative for cancer cells. We have a special MRI next week that will show how the spinal fluid in that area is moving, but how much will they be able to conclusively determine from that? And if it is cancer, are the available treatments effective?

We have a lot of questions and very few answers. We are taking shots in the dark.

As a result, I've been trying to live with where we are right now. I have a kid who feels like her normal self, who does not have a brain tumor. She can swim and run and dance and jump on a trampoline if she wants to. We will do radiation for 6 weeks. She will get more MRIs. She will return to school in August. We will try out available medications. She is not dying from cancer today, tomorrow, or a month from now. We will focus on what is good and try not to worry about what we can't know or control. I will keep repeating this to myself. 

 A song to about enjoying life

Romy, "Enjoy Your Life"

Praying for You

"Sending you lots of prayers." "Praying for you." Different versions of this have been said to me so many times. I know the people that say it mean it genuinely, and I always thank them for it. But, it can feel empty.

I was raised Presbyterian. We went to church most Sundays. I went to church camp every summer, sometimes multiple church camps. I went to confirmation class. I got a Bible when I graduated high school. But, as an adult, I have an unsure view on religion, and really church. Nothing bad happened to turn me away, but I also never had a strong reason to go back. Church was always a place I put on the church version of myself rather than a genuine version of myself. Now, I'd really rather not do that. 

My view on religion is something that I have not been open about to many people in my life. One time I told someone that we don't take our kids to church, and I was asked if I wanted my kids to be losers because only losers don't go to church, as if our worth and goodliness is only found by being in a pew on Sunday morning. I also wonder if the people who know we don't go to church are praying for us to find a church home, something I didn't ask them to do. 

Yet, as we've been going through this, I sometimes find myself praying. I pray when I go to sleep at night and again when I wake up. It's like a meditation I go through silently to be thankful, to beg, to sort through my thoughts, to focus on what's happening now rather than spiraling about a future I cannot control. I mean, what else can I do?

Whether there is a God or not, I do not believe that he or she has anything to do with which kids get cancer and which don't, which kids survive cancer and which don't. How can people tell a parent that it's God's plan when they are watching their child suffer from a horrible disease? People don't think and just say whatever cliché thing is the easiest - a sentiment that feels hollow because it is hollow. "Praying for you." "God's got it."

If I were to look for God in all of this, its in the doctors who spend their lives researching and treating patients. It's in the therapists that show up to work everyday and treat terminally ill children and their families normally and with care. It's in the parents who've lost their children and then dedicate their time raising money for research and supporting other families going the same thing. It's in the people who have showed up for us without us asking, sending gifts and money and food and just being there. 

In the car the other day, I was talking to my 4-year old about prayer. She had been asking about her big sister and the conversation went in that direction. I told her she could say a prayer inside her mind if she wanted to. She could say what she was thankful for or ask God for things.  She was quiet for a minute and then asked if I wanted to know what she was thankful for. "What?" I asked. "Every thing in the whole world."

A song of love and loss

Clean Bandit, "Symphony"

Surgery and the Aftermath

Sunday, May 4, 2025 was surgery day. My daughter had been in the hospital since Thursday. I went home for the first time Saturday afternoon. My husband told me to take a break and a shower, so I did. I sobbed the entire way home. 

I wondered if my daughter would be the same when she woke up. If she would be able to walk and talk. I wondered if each song that came on would be a good song to play at my kid's funeral. I wondered if my 4 year old would remember her big sister if she died during surgery. I was irrational and scared and I had been holding everything in for 3 days. I probably shouldn't have been driving. 

When I got home, I took a shower, ate dinner, hugged my 4 year old daughter, and finally felt like I could breathe a little better. I texted friends and told them what was going on. I talked to my mom, who had been babysitting. Then I tried to go to sleep, and my brain kept spiraling and I kept crying. 

I woke up early the next morning with puffy eyes. A cold wash cloth did little to help. But, I had to get to the hospital early for surgery. 

At the hospital, my husband and my daughter were still asleep. I took off my shoes and crawled into bed with her. When she woke up, we cuddled and whispered. Was she scared? Was there anything she wanted to ask me? We giggled at Dad snoring. 

In pre-op, we listened to music. The nurses asked her what she did for fun. She said she had just been in a musical - Willy Wonka - and she was an Oompa Loompa. One of the nurses got excited and said he had been Mike TeeVee in a production one time. She then regaled them with the Oompa Loompa song AND Defying Gravity from Wicked, before the meds kicked in and she was out. 

My husband and I went and got bagels and coffee from Panera before settling into the waiting room. A few hours later, the surgeon came in and said the surgery was a success. He had gotten all of the tumor, and she might be able to go home the next day. We were relieved. 

In the PICU, my daughter was waking up. She was talking some, but was still a little out of it. The biggest thing I noticed was that she had what the OT later called a "flat affect." She would say "Got it" or provide one word answers to direct questions, but her personality was not there yet. I was prepared for whoever she was going to be post-surgery. I was just happy to have her awake. 

I stayed with her in the PICU that night. I had to help her go to the bathroom every 30 minutes. The nurse put a portable toilet next to the bed so she could go without having to be unhooked from all the IVs and monitors she was connected to. I managed to find a time to get myself dinner, which I ate as quickly as I could. I brought a grilled cheese on ciabatta back for her. She didn't eat much of it, but was so happy - ciabatta is her favorite. 

That night I had to sleep on the little recliner in the room. It was facing the door, and even though I tried to close the curtain, there was a light shining in my face the entire time. I also did not have a pillow or a blanket, so sleep wasn't really happening. But I wasn't crying anymore. Positives. 

My daughter had to sleep at an incline to help the fluid drain from her brain. She wanted me to tuck a stuffed animal between her shoulder and chin with the arms hugging her. All night, my job was to help her up, help her back down, and tuck a dog under her chin. 

The next day we met more doctors and therapists. They checked her vitals and her incision. They asked her questions and walked her around the floor to make sure she could handle stairs and bending over. The OT asked if she liked Taylor Swift like so many others her age. She said not really, but then sang "Cruel Summer" to the OT in a mostly monotone voice. It was a small sign of her normal self. We laughed and felt more relief. 

Then, they told us we could go home. Just like that. Home, the day after brain surgery. We felt extremely lucky. 

A song while waiting for brain surgery

We Love You, Leave Us Alone

Outside of dealing with my 8 year old child about to undergo brain surgery, the biggest stressor for me was telling other people about it.

Here's the situation: we were in a small hospital room - bed, couch, bathroom, desk and chair. Outwardly, my husband and I were trying to talk to doctors, keep our kid calm and entertained, and take care of ourselves (eating, drinking, bathrooming). We were also trying to take in a lot of information about pediatric brain tumors and the effects of craniotomies on children. (Children can have strokes, memory problems, or physical impairments that last for days or even months.) On top of that, we had people constantly texting for updates and information that we just weren't ready to give or talk about. Each time I tried to articulate what was happening, even over text, I started crying. And I really didn't want to lose it in front of my kid. Tears, fine. Full on sobbing? Not fine. 

Honestly, the biggest help were the people who passed information along for us without even consulting us. I wanted people who care about us to know. I just couldn't do it myself. 

And the questions and messages of concern weren't just coming from family and friends. They were also from coworkers, teachers, neighbors, people we aren't close with, but who we had to tell for practical, logistical reasons. 

While waiting for the sedated spine MRI to be done, I got a call from her school. The person on the phone was expressing concern and support. All greatly appreciated. But then they started crying. And then I was in the position of comforting them, me whose daughter had a brain tumor. It felt absurd. I decided to stop answering my phone. 

Then, we got the results from her spine MRI. They found spots, but they weren't (and still aren't) sure what they are. 

Google leptomeningeal disease. Poor prognosis. 4-6 months with treatment. Cry. Realize it's results for adults, so add pediatric to the search. Poor prognosis. Survival measured in months. Cry. 

We decided not to tell anyone that part yet. 

A song to listen to while getting an MRI

Lindsey Stirling, "Surrender"

The Beginning

On May 1, 2025 I found out that my daughter had a brain tumor. It was one of those things that you know is a life shift - everything after this point will be different. 

Throughout April, she had woken up three separate nights, each about a week and a half apart, with a headache that then led to vomiting. In our sleep stupors, my husband and I initially brushed it off as allergies, which were particularly bad in April. Clearly she must have a sinus infection and drainage. We told her to drink some water and we'd assess it in the morning. 

Each morning after these incidents, she would eat food, throw up again, sleep until 10 AM, and then wake up again and be completely fine for the rest of the day. No fever, no headache, nothing. A Google search indicated that it could be a virus, allergies, or migraines. It said, "In rare cases, headaches and vomiting can be symptoms of more serious conditions like brain tumors or meningitis." There was no way we were rare. A brain tumor never even entered my mind. 

After her third incident, I took her to her pediatrician, sure that they would see me as an overly cautious mom. It seemed like nothing. But, the doctor took me seriously. She listened carefully as my daughter explained what had been happening. She performed some motor tests and checked her eyes. Then the doctor said, "I don't see anything obviously wrong, but something doesn't feel right. I think you should get a CT scan." She recommended we go to the ER at the children's hospital instead of waiting for a referral. It would be quicker and cheaper. 

So, off to the ER we went. It was 3 pm. We should have stopped for food. We should have stopped for a change of clothes. But, I was convinced it would be nothing. We would be going home that night. 

It wasn't and we didn't. 

At 5:30, after being in the ER since 4, we saw the first doctor, a young resident. He was mostly concerned about meningitis, but was going to do a CT first. We waited for hours, watching cartoons and listening to music. 

At 8, they wheeled her back for a CT scan, which showed a brain mass. The doctor, the attending physician this time, called me into a separate room to tell me the results. The room was small - big enough for a couch and a few chairs. A room to tell parents bad news. A room to collect yourself before going back in to see your kid. I fought back the tears and felt proud of myself for holding it together. A stupid accomplishment, really. He asked if I wanted him to tell my daughter the results. I did. She would want to know, and I wasn't sure I could do it. 

At 9, we were admitted to the hospital for an MRI. They needed better pictures to know what they were dealing with. 

At 12:30, she got an MRI of her brain. 

My memories are of being hungry, cold, and overwhelmed. I sat with her in the MRI room wrapped in a hospital blanket, holding her foot and leg to remind her that I was still there and encouraging her to stay still. The MRI took 45 minutes. Later, back in the hospital room, she finally slept. I think I did too. I know I cried a lot as silently as possible so that she wouldn't hear me. 

The next day was a parade of doctors and tests. She got another MRI of her spine. We met with oncology and neurology and neurosurgery and pediatrics and therapy. The findings were that there was a tumor on her thalamus that caused the ventricles to become enlarged. Apparently, when she was sleeping, the fluid couldn't circulate and drain properly, causing the headaches and vomiting. 

I felt both like shit for brushing her off and so glad I took her to the doctor when I did. I decided to focus more on the good parent in me and less on the shit. 

Surgery was scheduled for two days later.

A song from our ER playlist

Adele, "Water Under the Bridge"