I cried today.

I cried today, which probably doesn’t seem surprising. But due to being medicated for my OCD and generalized anxiety disorder, tears are few and far between. In fact, I could probably count on two hands the number of times I’ve cried since Adeline’s diagnosis. So today when I called the benefits coordinator for my district to discuss a change in insurance, the last thing I expected was to end up crying on the phone. The insurance plans being offered by my district are changing, and our current insurance plan is no longer an option. Don’t get me wrong I’m so thankful we have insurance. But the thought of trying to figure out if *every single doctor* involved in Adeline’s care accepts our new insurance was overwhelming and sent me over the edge. This includes oncologists, pathologists, radiologists, cardiologists, anesthesiologists/sedationists, nutritionists, physical therapists, surgeons, emergency room doctors, etc. (For those is Central Texas, we currently have Scott & White, so I know that every single person we come in contact with at A’s treating hospital is in network.) In the long run, it really doesn’t matter. I know for a fact that 2-3 months in to our new plan year, Adeline will have met her out of pocket maximum. And I also know that we will do whatever it takes and see whichever doctors we need to see to keep Adeline healthy. But today it was too much. And I’m thankful for the sweet woman in HR who listened to me, HEARD me, and found a way to do what she could to take a little off of my load. 

The last “before” day

 

I came across this post recently, and it really resonated with me. I made a couple edits, and then have been sitting with it and contemplating its meaning. At first glance, it seems really harsh. Like, “You don’t *know* me!” But the more I’ve wrestled with it, the more I realize that isn’t the tone at all. The pandemic had all of us in isolation (some longer than others), and we all returned to our “real lives,” changed. Some of us, ever so slightly. Some of us, in drastic ways. And I think we all expected for things to go right back to normal.

Our family endured the hardest parts of Adeline’s journey while still in isolation. I was out of the classroom for 17 months. And although we did share her story, I don’t think it reflected how much I was changing. I don’t even think I realized how much I was changing until trying to go back into the “real world.” I tried to do things like the old Katie, and I just couldn’t. And I struggled with that a lot. Especially feeling the weight of the pressure to live up to the old me. But the truth is, I’m completely different. There is still some of the “before” me there, and maybe some more will re-emerge as time goes on. I’m still determined (stubborn), loyal, considerate of others. But I’m different. My priorities, my focus, even the way my trauma brain works. All different. And that’s okay. 

I knew that D-day (diagnosis day) was Sunday. My body has felt it all week. But I somehow lost track of the days and was taken aback by this picture on TimeHop today. Literally took my breath away. I had to double check that the date today was indeed the 16th- the last “before” day. I took this picture and knew that something was wrong. Of course, I couldn’t have imagined what it was. But I just knew. 

Tomorrow it will be two years since receiving Adeline’s diagnosis. 730 days of battling with leukemia. We are so grateful for where she is now. Back at school, still in remission, living as close to a normal life as she can. But her journey isn’t over (just this week she’s neutropenic again and missed a whole week of school), the threat of relapse still looms, and tomorrow still brings heaviness. It marks the day that started the “after.” I have two pictures of me from that day, one before and one after. And that’s how I see them in my mind. I want to go hug the before Katie and tell her to hold tight, but also to embrace the change because it means she’s stepping into the moment and adapting to meet her needs and the needs of her family.  

 The last “before” picture 

4/17 in the Emergency Department 

I asked Adeline if there was anything she wanted to do to mark her cancerversary. She said, “Get Chuy’s” which seems to be her answer to everything. So we’ll get takeout and embrace the heaviness of the day while reflecting on how far she, and we have come as well. 

Navigating a new normal

Adeline is one cycle (3 months) into maintenance, and it feels like we have one foot in the cancer world and one foot in the “real world.” It’s been harder than I imagined getting back to normal, mostly because our new normal is so different. Chemo everyday, plus continued mindfulness surrounding Covid, makes everyday decisions tougher than they should be. More than once, Adeline has had to take chemo while out. Here she is taking chemo at the USWNT game in Austin. She’s also taken her daily chemo at a drive-in movie and a summer swim party.  

We have tried to make this summer enjoyable and memorable, since last summer was consumed by cancer, covid, and kidney transplants. The kids have been able to go to camp for part of the summer, and Adeline is thriving as a CIT. She still tires easily, but is learning to listen to her body and not push.  

Next Monday starts cycle two of long-term maintenance. Her body has tolerated this mix of chemo meds fairly well, so we’re cautiously optimistic for what the fall holds with school and a more intense schedule. 

She recently hit the halfway point in treatment. A friend asked if it felt good to be half done or overwhelming to think that we still had 14 months to go. And honestly, it feels both. I’m hopeful that the back half will be easier than the front half, but I also know there are no guarantees in the cancer world. For now, we’re enjoying our summer and the fact that she is healthy enough to do the things she wants to do!

🧡

One year.

One year ago today, we got the call from our pediatrician that rocked our world. We went in expecting possible appendicitis and ended the day with a cancer diagnosis. Talk about shock. 

Recently I was cleaning and came upon the paper that I had scribbled notes on before packing our bags and heading to Temple for the first of what feels like hundreds of times. I shared a picture of the note with a friend and she mentioned how you can see the panic and fear in my writing. 

And it’s true. Scribbles, print to cursive and back, misspelled words. And those little stars next to “65% blasts on smear?” That’s screaming CANCER. 

The last picture I took on her diagnosis day was actually early in the morning on the 18th. We had finally gotten settled in a room on the floor and she had drifted off to sleep. I requested to speak to the doctor, wanting confirmation of what we were expecting. The resident who had come in to check on us was hesitant, but the sweet nurses could tell that I needed this. They assured me that they would call the attending in to visit with me. And he did. Some kind doctor came and sat next to me while Adeline slept peacefully, and he confirmed- leukemia. I knew he couldn’t tell me any more than that, but I needed to know so I could at least try to rest a little. When he left, I settled in the recliner as close to her as I possibly could and snapped this picture. I’m not even sure why I took it, but I did. 

And while I definitely still felt fear, the panic had been overtaken by peace and resolve. Determination. The knowledge that we would do everything in our power to come out on the other side. Before I left the house that night, I grabbed Todd by the shoulders and said, “We can do this. We ARE doing this.” And we were. The second I got the phone call, we were already doing it. 

Today feels heavy and hard. There is a lot that we have lost in the last year, and a lot of little griefs along the way. And I recognize and acknowledge them, allowing my body to process and grieve. Grief of the loss of normal and naïveté to the realities of pediatric cancer. But I received two amazing messages today from my sisters and best friends. “...take a moment today to embrace all you’ve gained and not only all that you’ve lost. Celebrate how far you’ve come and not just how far you have to go.” And “365 days of HARD. 365 days of heartache and grief. 365 days of appointments and chemo and unknowns...AND also you’ve shown 365 days of bravery. 365 days of strength. 365 days of endurance and perseverance.” 

And dammit, they’re right. I spent most of the morning in bed, sleeping and hiding under my weighted blanket. Sad at thinking of the last year. But I will spend the rest of the day celebrating. 365 days of bravery and strength and endurance and perseverance and courage and determination, and...and...and...

Tonight calls for Prosecco and ice cream and a celebration of my little family. Because we ARE doing this. 🧡

How to be there...

There’s certainly no handbook given to you when your child receives a cancer diagnosis. The first few days and weeks are purely survival mode, literally. And while things start to become more “normal” the further into the cancer journey you travel, you still don’t ever really know what you’re doing. And even though we’re 10 months in and we’ve definitely developed routines that make things a little easier, we still don’t have it figured out (and never really will). In the same light, there is also no guide for being in a supportive role to a person or family going through this process, whether that role is family or friend, coworker or acquaintance. And even if there was, it would look different for each person on the journey. But since I’ve been asked how people can support us specifically, I’ve gathered some ideas of things that I/we have found helpful. 

Respect Boundaries

Every person has to set their own healthy boundaries depending on their comfort level in every situation. For us and our journey, we established boundaries early. The second thing I shared after sharing Adeline's diagnosis was the fact that Todd and I had been processing through a spiritual deconstruction. This was very raw and vulnerable for me, but I knew it was a boundary I had to establish so that I could process and grieve in the way that I needed to. It wasn't for anyone to understand (although I am open to discussing if you have questions or wonderings), rather it was for me and my healing.

Another boundary that our family has established is giving Adeline full autonomy in the telling and sharing of her story. I know there are many people who have medical journeys who are very comfortable with their stories being shared far and wide, and create public social media profiles where their stories go on to be shared by thousands. For us and our story, we decided to keep it a little closer to home, choosing to share most social media posts with people who we already have established relationships with, or people who have a connection to our family or to Adeline. With that being said, we do share a lot of what's going on in her treatment so people can understand what it's like for her and our family. 

Ask questions/Say something

Before April 17th, 2020, "Cancer" to me was a big, bad word. I didn't know much about what the experience was like because I'd never been through it with someone close to me. And it was incredibly scary to me. One of the reasons that we're so open with the specifics of Adeline's journey is to help people in our life see the reality of pediatric cancer, and specifically leukemia. You can not move from sympathy to empathy unless there is some form of understanding, which can be hard if you haven't experienced something similar. So if you're unsure of what's going on and want to understand better, ask! 

Also, while responding to texts or messages can sometimes be a task (see below!), it is always nice to receive a message that says we're on your mind. 

Lean in when you can...

but don’t feel guilty when you can’t. Cancer is a beast, and many people have gone through a similar journey with other friends or family. And if you haven’t, trying to imagine what this life is like for a parent...well, to quote the musical Hamilton, “You push away the unimaginable.” So I understand that there are times when leaning in to our journey is hard or scary or emotional. Being ON the journey is scary and emotionally exhausting. But the amazing thing about having a big support system is that people get to take turns. Whenever I was running races, my family and friends who were there to cheer me on could usually only catch me at a few places along the course. But it wasn't just their job to cheer me (and only me) along. Others were there for me when they weren't,  just like they were there for others too. So, lean in when you can. Maybe that looks like doing something specific (a meal, an errand, etc), or maybe that simply means connecting with our story and sending positivity and light to us.

Don’t try to fix it

This is a hard one because it's in most of our nature to help fix things or make people feel better. Except there is nothing to be done to "fix it" aside what is already being done medically. 

Then there are the days when things are so heavy that something simple becomes too much. And when I'm feeling those big emotions, I don't need to see a bright side or hear "at least." In those moments, I just need to sit in the feelings. And if you feel up to it, you can sit with me a while. Maybe even ask if I want or need to talk about it. Chances are, I just want someone to hear me and say, "I'm sorry. I'm here with you."

Give grace

Please know that most of the time, my brain is mush. I don't know how many times I have responded to an email/text, sent a thank you note, or completed some other communication oriented task only to realize later that it happened strictly in my mind. It happens a lot. Between working full time (remote teaching, which is a whole other ballgame), keeping our household running, and caring for Adeline and her needs, sometimes anything outside of what *must* happen gets put to the back of the to-do list, or simply completed in my imagination only!

I grew up writing and mailing thank you notes for every gift, and for me to be behind on something like this makes me cringe. So please know- we are incredibly grateful. Every meal, every gift card, every grocery pick up, coffee drop, yard mowed, all of it. We are so thankful. So, so thankful.

Thanks for being on this journey with us. 🧡

  

Hospital Life

We’re coming up on 10 months since Adeline’s diagnosis (on the 17th). If I’ve counted correctly, she’s spent 44 days in the hospital (and is currently on day 9 of a stay). We never like being in the hospital, but we know that sometimes it’s the best place for her to be. She’s had admits for diagnosis, fever/neutropenia, neuropathy, and now malnourishment and blood sugar issues.

Somehow the hospital feels isolating, yet comforting at the same time. There’s so much routine and schedule, but every day comes with its own unknowns. And it’s so loud, I have to cast a small net to catch only the sounds within our four walls. Otherwise, the beeps, babies crying, toddlers yelling, and chatter from the nurses station gets to be too much. A white noise machine, diffuser, and my yoga mat help us maintain zen in our room. 

Of course, the staff is amazing. They go out of their way to make sure we have everything we could need and are as comfortable as possible, despite being at the hospital. By now, we have a routine and rhythm that we have created to make our days easier. We keep a hospital “go bag” with two nights of necessities packed and ready to go. My hospital blanket, egg-crate mattress topper, and travel pillow are always in the back of the car. 

I have to leave our room several times a day, and I try to take the time in the elevator as a minute to breathe. When the elevator doors close, I let all the hospital sounds and worries leave me for just a minute. Drop my shoulders, unclench my teeth, close my eyes. And then I count the beeps to the fifth floor. Beep- breathe in. Beep- breathe out. Beep- breathe in. Beep- breathe out. Then the doors open and it’s back to reality of hospital life. One thing about hospital life that I love the most- she always wants to snuggle with me as she falls asleep 🧡

Update on decisions since my last post- we settled on option two and were preparing to start Interim Maintenance 2. Unfortunately, Adeline dealt with severe neutropenia and spent two weeks in the hospital before she could begin. During that time, three bone lesions were discovered after a CT scan. The biggest spot was biopsied and we spent a nerve wracking 5 days waiting on results. Thankfully, they came back showing no cancer cells present. After her counts finally recovered, she was discharged and scheduled to begin IM2. When she went into the clinic for day 1, she was severely malnourished and dehydrated- too much for chemo. So that’s how we ended up back here!

The only way out is through.

Sometimes my Timehop app can be really hard to look at. To quote my sister, “Time is a weird thing with grief.” Seeing things even from just one year ago can be so hard. Sometimes it’s hard to remember a time before cancer. But sometimes, just the right thing pops up and gives me the encouragement I need. Recently I’ve been feeling so tired and overwhelmed. I give everything I have to teaching full time (online), being a parent, being a wife, and being Adeline’s advocate. And honestly, it’s been heavy lately. But then this gem popped up last week. 

I was training for a race and having a tough run. Todd and the kids had tracked me down to cheer for me. It doesn’t seem like much, but even that small moment was enough to give me the energy and encouragement to finish. In the recent days when it felt like one of “those runs,” lungs burning, legs like lead, every step requiring intention, it was a good reminder that even the hardest runs eventually end. That exact spot in the picture is 2 miles away from home, and mostly downhill. 

Adeline is one week away from the end of delayed intensification and one week away from finishing frontline, the hardest and most intense combinations of chemo protocols designed to knock out the leukemia and keep it away. After DI comes maintenance, the long downhill. The “easy” part of her chemo protocol. I have been looking forward to this for a while, and so has Adeline. In fact, I had completely overlooked DI and thought we were starting maintenance back in November. 

Then today we got some news at Adeline’s clinic appointment. Her oncologist has been mulling over her case and is not feeling comfortable moving straight into maintenance. Adeline’s leukemia is very high risk for relapse. There is no “standard of care” for her cancer because there are not enough cases to gather data from. Dr K (along with input from experts around the country) came together to determine her road map for treatment, and so far, her cancer has responded favorably. Which is good! It’s not acting like a very high risk cancer. But, Dr K said that we don’t want to be tricked because we *know* that it is a very high risk cancer. So he proposed three different options for Adeline’s next phase of treatment. 

1) Continue on to maintenance 

2) Repeat the interim maintenance phase (IM2) before maintenance 

3) A 3 round, super intense, throw everything we can protocol aimed specifically at addressing the myeloid markers. When I say this is intense, that is an understatement. (Triple IT (spinal) chemo, super high doses, new meds she hasn’t had before, and daily shots for two weeks straight).

Why present these options now? I know Dr K and I know how invested he is in Adeline’s care (and all of his patients’). I know that getting her well probably keeps him up some nights. And I know that he continues to seek the best for her. That’s why we’re here. Because he’s trying to ensure that we’re giving Adeline the best treatment possible. The hardest thing with Adeline’s treatment has always been that there is a lot of (educated) guesswork involved. Dr K said as much today. They don’t know what will lead to the best outcome because there is no data on cases like hers. And before you doubt his expertise, Dr K did his fellowship at St Jude’s and worked there for many years before settling in central Texas. He is one of the best of the best. And he is constantly consulting with the top pediatric leukemia specialists on Adeline’s care. 

Of course, we will trust Dr K and his recommendations, but he is also giving Adeline (and us) input. He continues to consult with other doctors and will discuss more with us next week. When I asked Adeline what she wants to do, she prefers option 3 even knowing how hard it will be on her body. One of my favorite running mantras is “the only way out is through.” That’s how I feel now. We’re not as close to the end as we thought, our legs are heavy and our lungs are burning, but the only way out is through. So, we press on. One step at a time.