Squeezing the Most Out of Summer

I am currently at Cincinnati Children's Hospital, sitting in a recliner with SpongeBob SquarePants blaring on the TV above. We officially started the clinical trial today and have to spend the night for monitoring due to their standard protocols for clinical trials. My daughter had her first dose of ACT001, an oral chemo and inhibitor targeting different pathways that lead to the growth of DMGs. One major side effect is nausea, but so far she has tolerated the first dose well. 

Because we aren't sure what side effects my daughter will experience, we (or I really) have been trying to cram in as much fun as possible while she is feeling good. She went to 3 different camps in June. On July 4th, we went bowling and played at the arcade before setting off fireworks in the driveway. My husband, oldest daughter, and I drove to Cincinnati on July 6, and between the clinic visit and her MRI, we went to a Reds game and to the zoo, both of which were a lot of fun. 

Then, after my husband flew home and we finished the MRI, my daughter and I had 4 free days before the next clinic appointment. It's about a 7 hour drive back to North Carolina, and we didn't want to do that. We also didn't want to stay in a hotel eating take-out, so we decided to drive 5 1/2 hours up to Holland, Michigan to visit our friends and stay in their cottage on Lake Michigan. We hung out on the beach, played games, rode dune schooners, and stayed up way too late watching the sun set. It was truly the best way to spend the weekend, and I'm so glad we made the drive. 

Before cancer, we might have done less or been more conservative with our money. But, one effect of cancer is that we have become a little looser. Want overpriced souvenirs from the stadium? Treat yourself! Want a stuffed panda from the zoo shop? Treat yourself! I suppose part of the psychology behind that is that it is our attempt to capture as much joy as we can while we can.  

In my last post, I mentioned that I had been reading No Mud, No Lotus by Thich Nhat Hanh and quoted a morning mantra. There are many more mantras that a monk would have to memorize to practice mindfulness throughout the day. I told my daughter that there is even a mantra to recite when using the bathroom. She thought that finding joy in peeing and pooping was funny, and we've started just saying "joy!" to each other whenever something brings us joy. Farting - joy! Sunset - joy! Beating your mom at Uno - joy! It's just a good reminder of the big and little things that we can take for granted every day. Even all the bathroom jokes are a reminder that we have bodies that function and that is something to be grateful for. 

I am continually grateful for all of our friends and family who annoy us with check ins, force us to make plans, make offers to help, and just do normal things with us. While we haven't experienced a lot of cancer ghosting, there has been some. I try not to think about it too much. There are simply too many other things to worry about, and I don't want to allow myself to dwell on it. So, I appreciate all the stupid memes and check in texts a lot, even if it feels like doing a lot of nothing.

A Song That Makes My Daughter Happy

Imagine Dragons - "Believer" (Kaskade Remix)

From the Porch

One of my favorite coffee cups was a Secret Santa gift from the last Girl Scout volunteer meeting I went to. It is dark blue with white and green cursive that says "Live in the Moment." I use it as a morning reminder of what is important that day. 

A mantra that stood out to me in the current Tich Nhat Hanh book I've been reading, No Mud, No Lotus: The Art of Transforming Suffering, is:

Waking up this morning I smile. 

I have twenty-four hours to live. 

I vow to live them deeply and learn to look at the beings around me with the eyes of compassion.

I've tried to commit this to memory and say it to myself in the morning. 

I've seen other parents say that they wished they had spent less time grieving their child while they were still alive. I think on some level, it is impossible to not feel anticipatory grief. So instead, I am working on acknowledging those feelings when they come up and then shifting my mindset to something else. 

One morning this past week, my youngest slipped into bed as she often does for cuddles. My oldest was at camp and it's was hard to not think that this might be what it's like when she's no longer here and we are just a family of three. I feel so much love for my youngest and yet I couldn't help crying in that moment. I felt it for a bit, and then reminded myself that oldest is not dead. She's at camp, and I'm so happy that she got to go. I will see her tomorrow and get to hear all about the fun she had. 

The feelings came up again later that day when I was in the car. I felt sad, and then looked at my youngest in the back, looked at the sky, the grass, tried to feel grateful for the day, and let feelings pass. 

The reframing is a mental practice I'm trying. I am also working to shift my focus more generally. If we only notice the suffering, that is what we will feel. This blog allows me to release all of the shit feelings I have and to clear my brain so that I am not consumed by them all the time. But as I've written before, there are a lot of good moments too. And it's important to focus on those. 

Yesterday, because it was slated to be 100 degrees for most of the day, I got up early, made coffee, and sat on the front porch. I wanted to enjoy outside before it became oppressive. My oldest joined me with a cup of orange juice and some waffles. We laughed at the mockingbird perched on the top branch of our tree making car alarm noises. It was a nice way to start the day. And despite whatever else I felt that day, it started on a good note. 

Mornings like this are also possible because the low dose of steroids has given us back our kid. She is waking up early like she used to. She comes into bed and reads with me. The other day, she brought me her chrome book so I could look at her latest story idea that she wants to turn into a book. She has been doing things and not just laying in bed looking at her iPad. I love that. 

I am still afraid of what this new treatment will do to her and what it will take from us. But life exists in the now and not in the future or the past, so for now, I am on my porch with my coffee listening to birds and trying to be thankful for the day. 

A Song About Living in the Moment

Lucy Dacus, "Planting Tomatoes"

The Invisible Labor of Cancer

I took last week off from writing. I've been busy driving kids to and from camp, doing chores around the house, and coordinating with nurses, social workers, and friends to figure out what the next few weeks are going to look like. 

Tomorrow, we will find out officially if there is a spot on the trial for my daughter. We had to wait 3 months after radiation to enroll, and that date is tomorrow. After they hold a spot for her, we have two weeks to sign up and begin. We will be driving to Cincinnati July 6 and then meeting with the team July 7 to go over the trial details and sign all the forms to enroll her. She'll have an ECHO and an EKG after that. On July 9, they'll do an MRI of her brain and spine to get a baseline before treatment. We've decided to try having her do them awake now that she is 10. The brain MRI is about 45 minutes and the spine is about an hour. Doing them awake will make the whole process quicker and easier to schedule. As long as she can wiggle between and listen to music or watch a movie, I think she will handle it fine. Her least favorite part is getting the IV inserted and doing the MRIs together will mean just one poke, which she would prefer. After that, we have several days to fill before we have to be back on July 14. We have some tentative plans, but we'll just have to see how my daughter is feeling. 

In order for all this to come together, I have had to coordinate with the nurse at Cincinnati about the schedule and details, talk to their social worker and our local social worker, fill out forms to stay at the Ronald McDonald house (background check required), find out there's not room this time, find somewhere else to stay that is close to the hospital and affordable, and apply to be part of some local foundations that can connect us with other families and events. I've had a nurse and a social worker from my insurance call me (what they do, I'm not entirely sure) and we have to make sure we have enough of her medications to last for any travel. This means important phone calls coming in while I'm in the grocery store or the car and keeping track of so many emails I'm sure things get lost in my inbox. 

I feel pretty competent at getting it all together, but I also recognize that it is a lot of work. I think about how much more difficult this would be without the resources we have. The most basic being that we speak English. I also have a laptop and the internet so I can research and fill out forms easily. We've been able to save money in the last year, so traveling doesn't create a financial hardship for us right now. We also have friends and family who have connections and resources they've been able to offer us that have really helped. For this trial, we will have to travel to Cincinnati every 28 days as long as the medication is working. That is a 7 hour drive or a $400-per-ticket plane flight. If we didn't have a reliable vehicle or money for flights or jobs that would allow us to take time off, this would be inaccessible to us, even with support from non-profits. For some, even just finding and signing up for support from a non-profit is challenging. 

Socio-economic status and our proximity to a children's hospital directly correlate to health outcomes, obviously. Black and Hispanic children die from cancer at higher rates than white children for a multitude of reasons including income, language, and medical bias. Navigating all this pediatric cancer stuff is challenging for us. Without all of our resources, it would be almost impossible.  

For me and the other pediatric cancer parents I've met, we do all this and more because not doing it, not doing something, feels like giving our kids a death sentence. And, honestly, I don't have a lot of hope that this treatment will work, but even more I dread the moment when we are told that there are no more treatments available for us to try. 

A Song About Sharing the Burden

The Decemberists, "Don't Carry It All"

Another Clinical Trial

I know doctors go through so much training - med school, internships, residency - but I still wonder about the soft skills training they get. While some doctors have been a little oblivious about the emotional effects of what they are telling us, some have been very no-nonsense, but in a way that was needed. For example, in the PICU we were asking about a swallow study, something that had come up a few times when my daughter had her surgery in March. The doctor plainly asked what we would do with that information. Good point, I don't know what we would do with that information, so we didn't do it. Instead, we came home. 

Our neuro-oncologist is a very thoughtful, kind man, who likes to talk and makes sure he always asks my daughter about her hobbies and books she is reading. When he has to give us hard information, he does so in a language that our daughter wouldn't necessarily pick up on if she is in the room. He will email us detailed information about studies and treatments. He considers the timing of scans and appointments to minimize visits and make sure we are getting the best information. At our virtual visit last Wednesday, we talked about different clinical trials and which we thought would be the best option to pursue. He explained that it can be difficult to get accepted to a trial and that we should do that while we can. It can take time waiting for wash-out periods and other things just prolongs treatment. It is much easier to stop a trial and try something local than to do it the other way. He also recommend a trial because it is a way for us to consult with people that know more than he does about research and treatments specifically for DMG. 

Even though there is nothing available to us right now that looks like an amazing option, he emphasized that just because something hasn't worked well some others, it doesn't mean it wouldn't work for our daughter. Some people have had great responses to treatments unexpectedly and sometimes there isn't a clear reason why. I really appreciate his perspective and that he is able to allow us to have hope still. 

My husband and I have decided that we don't want to do a trial that is invasive or will obviously cause more trauma, especially without a high probability that it will be effective. For example, there is a vaccine trial in Minnesota that was willing to consider our daughter even though she has LMD. However, it would require repeated shots in her neck, and we would need to be in Minneapolis for probably 3 weeks and then go back every month after that for more shots. It is also a Phase I study, which is testing dosing and safety. I just wasn't convinced that it was worth it. 

Another study we looked into for a drug called CBL0137 is now being paused or stopped at some locations because kids were suffering from internal and external burns from treatment. I feel so badly for the parents who made the decision to enroll hoping for positive results only to have the drug do nothing but cause pain. 

We don't make the decision to pursue a trial lightly, and we are trying to preserve our daughter's quality of life as much as possible. We don't want to travel extremely far from home or be away for long periods of time. So, we are going to try to be accepted into the ACT001 trial, a Phase II drug trial, either in Cincinnati or Columbus, OH. I got an email about a MyChart account being set up at Cincinnati, so that is probably where we will end up. The earliest we could enroll is July 5, which isn't that far away. 

Until then, we have a full brain/spine MRI on Wednesday, and then we are probably going to Williamsburg to visit family on Friday. We weren't sure if we would go, but my daughter has been feeling so much better, and signs of herself are returning. She has been getting up early, been in a better mood, and is eating a healthy amount again (thanks steroids!). She has energy and wants to go do normal kid things and not just lay in bed. I am so thankful for that, and I hope it continues. 

I have been reading this book called Living Buddha, Living Christ by Thich Nhat Hanh. It talks about the similarities between Buddhism and Christianity, but since it is written by a Buddhist monk, it has a different perspective on some Christian practices. It's a short book, but I've mostly been reading little bits before bed, so it has taken me awhile to get through. One part that I read recently that stuck with me is how our suffering is caused by our delusion of the true nature of reality. That is, "Regarding something that is impermanent as permanent...we suffer." He also writes, "If we cling to our idea of hope in the future, we might not notice the peace and joy that are available in the present moment." With that in mind, we just have to continue to do as much as we can with the time we have - stay present and thankful and know how fleeting it all is. 

A Song I Listened to Multiple Times in a Row

Florence + The Machine, "The Old Religion"

 

Rollercoaster

We came home from the beach on a Sunday. Monday immediately felt lighter. Everyone was in a good mood, my oldest was eating better and had more energy. On Tuesday she had a pediatrician appointment and then we went to the library and got smoothies. Wednesday my oldest had a friend over and we went to see The Sheep Detectives, gorging ourselves on candy and popcorn. Thursday we planned to just chill and catch up on chores. It was a good week. Things change so fast. 

Thursday afternoon, my daughter started complaining about her legs hurting a bit, just the upper glutes, and she started walking funny. Two hours later, she complained that her eyes were hurting when she opened them, and she had a headache just above her eyebrows. I texted my husband who was out with friends to be prepared to possibly take her to the ER. I got my daughter into bed, and I put a cool washcloth over her eyes. She fell asleep, and I packed an ER bag just in case.

The next morning, I had to help my Girl Scout co-leader deliver toys we had collected to the children's hospital. Originally, I was going to take both kids with me so they could be part of it. But, my oldest still wasn't feeling up to it. Her headache was gone, but her legs were still hurting. While we were gone, my husband called the oncology office, and they recommended taking her in to the ER at the same children's hospital where I had just dropped off toys. My husband took her in and I tried not to cry in the car on the way home.

I texted my mom, who drove the 3 hours down from VA to watch my youngest, and I met my husband and daughter in the ER right after the MRI. The scan showed a brain bleed, new growth of her cerebellar tumor, and increased leptomeningeal disease (LMD). Because they only scanned her head, we have to wait until next week to see what is happening in her spine. However, the symptoms she is experiencing could be from LMD. LMD is when cancer spreads to the leptomeninges, the membrane that covers the brain and spine. Cancer there causes a build up of pressure, vision changes, leg and back pain, and seizures. The doctor also said the headaches could be due to the blood in her ventricle blocking fluid flow. I spent the night with her in the PICU. In the morning, neurosurgery decided there was no intervention needed at this point, so we came home with some steroids and that's it. 

We have a virtual visit tomorrow afternoon with her oncologist to discuss clinical trials, but I also suspect it is to have hard conversations about the future without my daughter in the room. I'm not sure any of the trials available to us are worth the travel, the side effects, or being a pin cushion for science, especially if they are phase I trials just testing for safety. 

The last few days, I've also been feeling like my youngest is getting lost in the mix. I optimistically took her out of daycare for the summer, but it's making everything a bit harder. She wants to swim and play and be a kid, and my oldest gets really tired and generally wants to read or nap. If my youngest were going to daycare everyday, I know she would feel left out of imagined fun she thinks we'd be having without her. Last night after a lot of 5-year old emotions, she told me she was sad that her sister wasn't playing with her anymore and that her sister just wants to be in bed chilling. I had to explain that her sister isn't just chilling in bed, that she is actually really tired. My youngest asked if it was from the radiation. I said yes. 

Even though my youngest is only 5 and hasn't even started kindergarten yet, she is picking up on a lot of stuff. She recently watched a movie where the main character's brother died of cancer. Surprise cancer plot lines have shown up in a lot of books and movies recently. Maybe it has always been there, and I'm just more aware of it now. Anyway, because of that, she is worried that her sister is going to die. She asked me if her sister is going to get better, and I had to tell her that I don't know. 

All of this has me reaching for some kind of life philosophy to make me feel better. I saw a video with a biologist talking about how many factors have to go right to create a healthy baby and for that baby to grow and become a healthy adult. It's a miracle that any of us are here. There is no great system of fairness or unfairness in nature. Things just happen, and sometimes you don't have the ability to change it. So, you have to learn how to live within it and be thankful for the good fortune of being alive here and now. 

A Lullaby 

The Beatles, "Blackbird"

Stuck in a Small Space with Your Family

We were at the beach last week. I rented a 3 bedroom condo at a resort on the beach with indoor and outdoor pools. I needed something to look forward to at the end of the semester. I also invited my parents. They have helped out with child care and driving to radiation appointments, so I wanted them to be able to spend some fun time with my kids. 

On the drive down though, my husband came down with a fever that turned out to be strep. I had to take him to Minute Clinic for antibiotics on our 14th wedding anniversary. He spent the first two vacation days in bed. 

My oldest was is a good mood the day we arrived, and we went for a walk around the resort and on the beach. The next day, she didn't want to leave the condo. This pattern repeated itself for the rest of the week - one day was fine, the next was not. Her eating was all over the place, and she probably felt tired and worn out. I managed to get her on the beach late one afternoon where we sat and read with our feet in the waves. It was nice. She interrupted my reading every minute with a new animal fact. 

Another day, we convinced her to get in the lazy river, which she enjoyed, but that only lasted for a little while before she wanted to go back up to the room. She did not care about going to the aquarium. She did not care about going out to dinner. It was difficult not to poke and prod her too much - to let her do what she wanted, but encourage her to get out. I'm not sure exactly what the deal was. It could be cancer affecting her energy levels in ways that she can't articulate. It could be just generally being tired of us or her little sister. I don't know. 

My youngest was happy doing everything. She played in the ocean for as long as I would let her. She went down the waterslides a million times. She loved the pirate dinner we went to and was generally as happy as a 5 year old can be. Spending time with just her, getting wrapped up in her delight, made me feel a little guilty, like I was replacing the bad child with the good one. 

I found myself wavering between happy and sad the whole trip. I just felt off, like it was my job to make sure everyone was taken care of and enjoying themselves, probably to the detriment of what I wanted to spend my time doing. But that is just being a mom on vacation. You can't read or sleep on the beach when you have to make sure no one drowns. 

My parents were also there. Being at the beach with them was good. They took my oldest out shopping and stayed in when the kids didn't want to go anywhere; they paid for things they didn't have to. But when they left, I felt more tired and sad. Throughout this cancer diagnosis, my parents have been great. My mom specifically, to the point where she will definitely try to make sure everyone else is taken care of to her own detriment. They've offered real material help like money, child care, all of that. They sold their RV and bought a second house down the street to be nearby if we needed. But, they don't want to know the details of her disease or her health, really. Or they don't want to talk about it with me. 

From my perspective my parents seem to avoid being alone with me, avoid calling on the phone to talk me rather than my kids, and don't ask how I am, really. My dad is the worst culprit by far. I actually have a whole draft started about my thoughts on men avoiding grief, but I haven't fleshed it out yet. Anyway, I get that she's their grandchild, and they are struggling a lot with it all. But she is my daughter, and I don't have the option to bury my head in the sand. When they left, I crashed out on the balcony alone, and I'll probably never actually talk to them about all of this. Families are weird and relational patterns get ingrained in ways that feel impossible to break out of. 

There were definitely times this week that I wished I could be there alone and just be. 

A Sad Song Trying to Be Upbeat

The Weakerthans, "Sun in An Empty Room"

Self Care or Whatever

In one of the cancer parent support groups I attended, they asked what we are doing to take care of ourselves. In a lot of ways, I have put my own stuff to the side. I don't for one second regret any of those decisions. I say that just because it is the truth. As a parent caregiver, my own life goals, health, and wants have become secondary. But, a year into it, I know that I have to get myself together in order to continue being a good parent and caretaker. You can only put yourself off for so long until the wheels start to come off. Stress in particular can wreak havoc. So, taking care of myself and finding a healthier routine has been a goal of mine this spring as I'm trying to get out of survival mode after my daughter's surgery and radiation 2.0. 

I am a creature of habit. I thrive on a routine that gets me out in the world. In the various towns I've lived in, I've gone to the same businesses frequently enough to become a known regular. When I lived in San Francisco, I went to the same coffee shop almost every morning, and they would just know my bagel order when I walked in. Currently, the librarians at my local library branch greet us by name and know how to pronounce and spell our complicated last name. Sure, there are days when I want to bed rot like anyone else, but I can't do that for long. After I had my oldest, I started going to classes at the Y. Any class, it didn't matter, just to be out and feel connected to something. I even regularly went to this older adult light weight lifting class just because it fit into my schedule despite being the youngest one there by 3 decades. Even if these people aren't my friends, it is good for my mental health to just be around people and see familiar faces. 

To get my physical self into shape, I've had appointments with my PCP and my dentist. I have an appointment in a month to get checked for skin cancer, something I've been putting off for years. I've been trying to get back into taking classes at the Y regularly, and I even started going on mental health walks. After dropping my kids off at school, I drive over to the park. There is a walking trail along the Catawba River that connects the park to City Hall. It's usually around 8 AM and still cool enough to be enjoyable. At first, I was a little worried about being on the trail mostly alone, but as I've gone more frequently, I see the same people there, which puts me at ease. My favorite is this older man who walks with a cane and carries a bag of nuts and seeds. He scatters them along the route and by the time I pass by, there are squirrels, birds, and bunnies everywhere. It makes me feel like I'm a Disney Princess and all my animal friends are coming out to say hello. 

Now that my kids are out of school for the summer, I have to figure out a new routine to keep it all together. I don't think my kids will want to walk at the park in the morning, at least not without complaining. I may be able to convince the youngest to go to childwatch at the gym in the morning, but I'll have to find a class that works with taking my oldest to summer camp. 

And, I don't even want to think about the appointments that may be in our future. That part is so unknown to me that, for the moment, I just have to live as if everything will be fine and try to make plans like a normal person. Maybe if I can build habits into my life now, they will help carry me through stress in the future, even just a little bit. 

Today though it is 1:30 PM, I am still in my pajamas in my bed with both of my kids, and we are all on our screens. Rest is healthy too. 

A Song to Listen to On A Stupid Walk for Your Stupid Mental Health

Jenny Lewis, "Puppy and a Truck"