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!