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. 

This is our life?! This is our life.

I’ve read it somewhere from another cancer mom that there is this constant oscillation between these two phrases- the question and the statement. And I’ve definitely found it true for me. There are times where I stop and look at all that’s going on around me and simply cannot believe it. And others when someone asks how we’re doing and I say, “Oh, we’re fine.” And then rattle off all the things that are not in any way normal or fine, because that’s just how it is right now. It’s not normal, but it’s our normal. I think one of the only reasons we can find ourselves more using the statement and less the question these days is we are finding ways to adapt. There are SO many ways that a cancer diagnosis changes your life beyond the doctor’s visits and treatments. Slowly, we’ve found ways to adapt and adjust to the things we did not ask for. And in doing so, we’ve made things a tiny bit more manageable.

Whole house intercom system (and walkie-talkies)         

We found early on that we had to have a way for Adeline to communicate with us wherever we were in the house, and we couldn’t rely on our phones since we don’t always have them on us. There was a night in the beginning that Adeline needed our help in the bathroom and her yells weren’t waking us up. I was on a mission after that night to find some way for her to reach us (hands-free) from anywhere in the house. We finally settled on Amazon Echos, using the drop in feature. Adeline can now reach us from any room in the house (including the bathroom). She also purchased herself an Apple Watch. Since Todd and I already had Apple Watches of our own, she can use her watch to walkie-talkie with us anytime. 

Calendars...and lots of them                                            

With so many appointments and meds to take, we have several calendars with Adeline’s protocols throughout the house  Adeline has her own in her room that she uses to track symptoms. We have a whiteboard hanging in our mud room that shows the current week. And I have a monthly/weekly calendar that I write all her protocols in. It helps to have things mapped out, and I think it helps Adeline since she knows what to expect.

Med containers and timers                                               

One of the hats Todd and I wear at home is “nurse,” and it’s our job to ensure Adeline has her meds on time. There are several chemo meds that are administered at home and it is imperative that she receive them on schedule. With some meds having directions like "take only on Friday, Saturday, and Sunday, or take 2 pills M/W/F, and 1.5 pills the other days," we definitely need something to keep us on track. We set alarms on our phones for all meds that must be taken on schedule, and start the week by filling her pill container with everything she needs for the week. This system has only led to one missed dose of her antibiotic, the first weekend we were home and newly diagnosed!

Shower seat and hand-held shower head                        

This is probably another one of those little griefs. Depending on where she is in a chemo cycle, it can be very difficult for Adeline to stand in the shower. That is a freedom I did not want to take away from her. So, we found a shower seat and hand held shower head combo that has given her that freedom back. And with the “Alexa” in her bathroom, I don’t have to worry about not hearing her if she needs my help.

Port access shirts                                                               

This one we figured out after her first in clinic chemo treatment. To access her port for treatment, she was having to undress at least part way. We wanted her to feel as comfortable as possible with this process, and one of the nurses mentioned that some patients wear port access shirts. These shirts zip and unzip so that her port can be accessed easily. We got four shirts and then put some of her favorite sayings on them in vinyl. 

Emesis bags galore

One thing that we can’t have enough of is emesis bags. I stashed these little green bags everywhere when I was pregnant with Adeline and suffered from hyperemesis, and now we’re back full-circle. We have them in A’s room, in my car, in Todd’s car, in Adeline’s chemo bag, in my backpack, and pretty much anywhere else where she might need it. Too many times, I’ve looked in her room to see her working on school with an emesis bag close by.

There are many other little ways that we have adapted to life with cancer, ways we've found to say, "This is our life." And as I was writing, I realized that I'm writing from a place of privilege. How lucky are we to have the resources and support to find all these little ways that make our life manageable?! How lucky are we that we can afford these things that make her life a tiny bit easier?! Maybe lucky isn't the right word. Nothing about cancer is "lucky." In fact, I often tell Adeline that it was just shit luck that led us down this road. But we are grateful that we have found these ways to manage AND that we have the resources to do so. Yes, "This is our life?!" and "This is our life." All at once.

Lots of little griefs

Cancer is big, huge, overwhelming grief. But it is lots of little griefs, too.

Like, a chemo bag where her soccer bag once hung. 

6 months

6 months. 184 days. Half a year. Some days it feels like it was just yesterday and some days it feels like a lifetime ago. On April 17th, I got “the call” that changed our lives. Adeline found out the next day when we were certain. In the last 6 months, she’s had:

3 bone marrow biopsies and aspirations

1 central line placement (port)

86 (!!!) chemo doses

35 clinic visits

12 NPO days

1 dressing change

3 ER visits

1 surgery (port placement)

4 days of hospital isolation

16 overnight stays in the hospital 

55 pokes

10 LPs (lumbar puncture=spinal tap)

1 echocardiogram

11 sedations

3 X-rays 

2 ultrasounds

1 CT

1 EKG

13 blood/platelet transfusions

2 discharges from the hospital (from her two long term stays)

2 peripheral IVs placed

6 Covid tests

Parent-given infusions

Hair loss

Uncountable Acts of Courage 🧡

Looking back on the last six months, there is a lot to grieve. A teenager facing her own mortality. Missed opportunities and experiences. Pain. Vomiting. Fear. Sadness. Anger. Isolation. And not just for Adeline. For all of us. Dr. K always says that leukemia changes you, and you get to decide how. I will not ignore the hard or try to “at least...” it to something better. It is there, and it is a huge part of our journey. There are good parts too. You! People. Community. Support. In droves. And every time I think we’re to the point where we’re “on our own,” people keep showing up. 

When Adeline had her clear scans last month, we were obviously so happy. But, (and this may be hard for me to articulate well, but I’ll try) for me at least, I don’t feel relief. Maybe just a little, but not in a way that I expected. Maybe I’ll always feel like it’s still there, that we’re just keeping it at bay. At the least, she’ll have chemo until 2022. And that is *if* the cancer doesn’t come back.

And I see and recognize that others (even others in our lives) did not have the same outcome. That doesn’t mean that people in our lives prayed harder, or that Adeline “fought harder.” She is a tough girl, but there’s not a lot of fighting to do when you hook up to a machine that pumps poison into your body. Yes, she maintained a positive outlook. Yes, she was brave when being poked for the 55th time. But (for me at least) I feel lucky that the medicine we gave her worked, that her body responded favorably. My friends who have lost loved ones to cancer- I see you. And I *know* your husband, mom, dad, wife, sister, son, best friend fought like hell. And I know people prayed for their healing. I also know that Cancer is a beast, and sometimes all we can throw at it simply isn’t enough. And it just isn’t fair.