Strength we choose, and strength that we find

On the evening of April 17th after I received the phone call from our pediatrician about Adeline's concerning bloodwork and probable diagnosis, I called Todd out onto the back porch to tell him the news. I literally could not speak. Every word stuck in my throat, like I was choking on it. It took minutes for me to string enough words together to make a coherent sentence. 

This picture was taken a few hours later. I am smiling with my girl, while waiting for them to confirm our worst fears.

Walking into the ER that night, I had a rock in the pit of my stomach and my legs were a little wobbly. But once we got settled in a room, it was like a wave of strength washed over me that I didn't even know I had. 

We have heard many times how strong, brave, and courageous we are. There was a moment in the hospital that Adeline and I had the conversation that we didn't want to have to be brave. We wished we didn't have to be strong or have courage. Sometimes we choose it, like when Adeline grits her teeth and holds perfectly still while her port is accessed. Or when we have to give our girl a shot in the thigh and we take a deep breath and just do it. 

But so many times I feel like we find strength when we need it most. Sometimes I even feel like it finds us. And there are certainly days when I fall apart at bedtime. Days when I spend most of my time laying on the couch, in and out of naps. But when it comes down to it, we move forward, putting one foot in front of the other like that night in the ER. Not without fear, but carrying it with us and finding strength along the way. 

Morgan Harper Nichols

On running a marathon (from FB 5/7)

Three weeks ago, our lives were normal. Well, as normal as they could be during a global pandemic. Today, Adeline completed chemo as part of day 15 of her induction phase of treatment. Today, we got even more information about her cancer. And today, honestly, it feels a little heavy. The doctors have discovered that Adeline’s cancer cells have monosomy 7. That means that her cancer cells have only one chromosome instead of a pair at the 7th chromosome. Her normal cells do not have this defect, so the deletion of the chromosome is happening somewhere with the mutation. This is also most often seen in myeloid leukemias, not lymphoblastic. T-cell ALL with aberrant myeloid markers=rare. T-cell ALL with aberrant myeloid markers AND monosomy 7=super rare. There is also a higher risk with monosomy 7 for a relapse of leukemia. It is not uncommon for patients with monosomy 7 leukemias to move forward with a bone marrow transplant even with remission to reduce the risk of recurrence. So today, we discussed next steps for Adeline after her induction phase, which ends on May 21st. She’ll have a repeat bone marrow biopsy, they’ll do HLA typing to find her a bone marrow donor match if needed, she’ll get a week respite from chemo, and then she moves on to a 70+ day consolidation phase of more chemo. Then a repeat biopsy and discussions about a possible transplant. Today our sweet Crawford had his HLA typing done so our doctor can eventually determine if he’s a match. On April 17th as I was driving Adeline to the ER at the urging of our pediatrician, I thought to myself “This is going to be a marathon.” Not only that, but this is like having a bib slapped on our chest and being shoved onto a marathon course with no other option but to run. A marathon we didn’t sign up for. But you all showed up and cheered us on at the start in a way that I can’t explain. You gave us the energy and strength to take those first steps and find a pace we can manage and a steady rhythm. You’ve been high-fiving and cheering from the sidelines. And today I realized- this is only mile 1. We have a LONG way to go. But we also know a thing or two about marathon running and cheering each other on. There may be some miles where we’ll need people to step in and run (walk?) along side us. We’ll need to see your smiling faces along the way, offering support at aid stations, telling us we can do it. But with you, with each other, we know this is a race we can complete. And we can’t wait to drink that celebratory post-race beer with you all at the finish. 

     

Sharing the news (from FB 4/18)

This is not the update I wanted to give. Adeline is inpatient at McLane Children’s Hospital with a preliminary diagnosis of leukemia. We will spend the next few days with more sophisticated testing to “give her cancer a name” so we can most appropriately treat it. She is scared. We are scared. Today we grieve, tomorrow we fight. 

And this is me being completely transparent: over the last 2 1/2 years, Todd and I have individually (though concurrently) had a deconstruction of faith. We recognize and embrace that we are surrounded by faith-filled family and friends. We are grateful and encouraged to know that our friends will be praying for Adeline and our family. But, though it may come from the most sincerest intention and faith-filled sentiment, please know that I’m not in a place to hear things like “God’s got this,” or “God knows how strong Adeline is” etc. Thank you for loving us and our sweet girl and for supporting us in this fight. 

How did we get here...

Every three minutes, someone in the United States is diagnosed with a blood cancer. That is about 178, 520 people. Never did I EVER think that we would become part of this statistic. Yet, here we are. We account for the diagnosis made at 5:45 PM on April 17th, 2020. Our 13 year old daughter Adeline was given the initial diagnosis of leukemia based on bloodwork ordered by her pediatrician. So, how did we get here?

We had already been in isolation at home due to COVID-19 for five weeks. Adeline has always been a little anxious when it comes to her health, but with the pandemic she was extra anxious. She had been tracking cases since January. With schools closed and communities on lockdown, she was nervous about getting sick herself. She had been taking her temperature so many times that I actually had to take the thermometer away from her. Looking back now, her temp had been slowly creeping up in the week leading up to her diagnosis. I kept reassuring her that she didn't have a fever, that I would still send her to school with a 99* temp. It wasn't until it hit 100* that I began to wonder what was up. Her appetite was smaller and she had a lot of acid reflux at night. She also complained of a stomach ache when doing her athletics workouts (assigned from school). We chalked that up to the fact that she hates working out. I definitely pushed her to get her workouts in that week. I did all of them with her, as I felt she needed the moral support.

Wednesday, April 15th

After a particularly tough workout during which she complained a lot of stomach pain and took several breaks, I offered to take her to the ER. In the back of my mind, I didn't expect to take her up on it. I was trying to gauge how serious she was about the pain. She told me she didn't need to go to the hospital, but she came to me later that evening in tears, convinced that she had stomach cancer. She had been googling her stomach symptoms and was sure that it all added up to cancer. Of course we told her that she didn't possibly have cancer. 

Thursday, April 16th

After her high anxiety the night before, I called the pediatrician's office for a tele-med visit. Having an anxiety disorder myself (more on that another time) I know that stomach issues can be a physical manifestation of anxiety. I felt that her stomach issues were most likely related to anxiety, but did not want to miss anything physiological. Adeline and I both visited with her amazing pediatrician, who took her concerns seriously. She agreed that it was most likely anxiety induced, but offered to order Adeline some bloodwork to rule out cancer (she as well had reassured her that the likelihood of her having cancer, specifically stomach cancer was incredibly small). Adeline declined, satisfied with taking some Prilosec and setting up some counseling appointments.

Later that evening, Adeline mowed the backyard. I snapped this picture with her new Airpods that she had just purchased with her own money. I thought to myself that she did not look well. As she was mowing, she kept stopping (again, not out of the ordinary for her as mowing was another of her least favorite activities). It wasn't until she threw up that I knew something wasn't quite right. She came in and immediately took her temperature. 101.1* Cue panic attack. I got her to take a bath and she was able to settle down a little. We took her temperature again before bed and it had come up a little to 101.8* Todd and I were stumped. She hadn't left the house in five weeks. Todd was the only one who had been anywhere in public, and he had been extremely careful. We watched her carefully throughout the night.

Friday, April 17th

I called the pediatrician first thing Friday morning. They scheduled an office visit for later in the morning due to her high fever. Her stomach was still bothering her. The only thing we could think of was potentially appendicitis. Her symptoms didn't line up with covid-19, or anything else that we could think of. We did a strep test and urine culture just to rule out things (both were negative). Our pediatrician ordered an ultrasound to look at her appendix. While we were waiting on the orders for that to be arranged, I was texting with my sisters. Amanda suggested that I ask for bloodwork since something was definitely not right. Dr. S agreed and off we went to the lab. She did a CBC along with some other tests to rule out some rare stomach bacterial infections. We really felt that it was her appendix, but thought that if she had an infection somewhere else that her white blood cells could possibly come back elevated. We did her blood work, but had to wait on her ultrasound. She had to be NPO for the ultrasound, so she couldn't eat anything until that was taken care of. Todd took her to the ultrasound as I had a prescheduled tele-therapy appointment. It was supposed to be my last appointment for a while, as my therapist was scheduled for maternity leave later in the week. We talked about how I was feeling about what was going on. Then I did some yoga and waited on Todd to return with Adeline from the ultrasound. We had just sat down to dinner when my phone rang. It was my pediatrician. She asked if Adeline was nearby and then suggested I go into another room. I went to the back porch and could tell by the shake in her voice that it wasn't good. I just remember her saying based on the results of the bloodwork, it looked like leukemia. Time stopped. I couldn't breathe. We talked for a bit, I scribbled down some notes from the bloodwork, and then she let me go so she could contact the hospital and arrange for our arrival. I called Todd outside and shared the news with him. We decided to tell Adeline the basics- the doctors needed to run more tests and that they were looking at cancer, but we didn't say more since we didn't have an official diagnosis beyond leukemia. We packed our bags and waited for the call from our pediatrician, and then headed to McLane Children's Hospital which would be our home for the next ten days.

In the time it has taken you to read this, two families' lives have been shattered with a diagnosis of a type of blood cancer.