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

Cancer in the time of COVID

When Adeline was first diagnosed, we were five weeks into isolation. There were some things that benefitted her: she had not been exposed to anyone or any germs leading up to her diagnosis, everyone around her in the hospital was wearing masks, and she had the flexibility to complete her school assignments digitally, and when she felt up to it. But there are so many layers to having a critical illness in the middle of a global pandemic. Only one parent could be with her in the hospital, except for in 30 minute chunks. Crawford couldn't see her and she couldn't have any other visitors. And as the support came pouring in from family and friends, we still couldn't do the one thing that we needed on a basic human level- hug and be held by those who love us. Check out the risk level for hugs. Moderate-high. Simply hugging someone would risk Adeline's (and our) health. 

As restrictions began to be lifted and people started to resume more "normal" activities, our family remained in isolation. In a non-COVID time, Adeline (with her diagnosis) would be able to see friends, go out in public, and be as close to a normal teenager as possible. Now, the risks are too high. She remains isolated at home. Our high-energy, healthy eight year old son remains isolated at home. Our family remains isolated at home, for (going on) SEVENTEEN WEEKS, with no end in sight.

Today I met my California sister in a Starbucks parking lot in Buda. That's because she is now my TEXAS sister, and she lives a mere two hours away from me. But due to the ongoing severity and increasing cases in our state, I couldn't even hug my own sister. We had to settle for a masked conversation with our cars pulled side by side. I know that every family gets to make decisions that they feel comfortable with regarding activities, travel, and masks. Just remember there is a sweet teenage girl you know (who is already grieving a lot) who must remain in isolation until we as a society can figure this thing out. If you don't wear a mask for yourself, please, wear one for Adeline. 

Consolidation Day 1 (from FB 6/15)

Consolidation Day 1 Update: For as stressful as the last two clinic visits were, not making counts, today was smooth. Her counts came back looking great. ANC was 930 and her hemoglobin was up as well! The only hiccup was accessing her port. The one inch needle is now too short, as her port has settled in a little bit (this is normal). So they had to deaccess and reaccess with a 1.5” needle 😳 She handled it like a champ. They drew blood from Adeline to send to Texas Children’s Hospital’s transplant department (if she’s in need of a transplant, she will go here). TCH wants to do her HLA typing in their lab, because they can look at things at a DNA level. They also took blood from Todd and me to check for a possible haplotype (half) match. Her chemo infusion was of a drug recently added to t-cell protocols after evidence of its benefits (nalarabine). She goes everyday this week for nalarabine infusions, then a break on the weekend and back to clinic next Monday for something different. They let her stay accessed so she won’t have to be poked everyday. Todd and I will take turns going to clinic with her this week. She’s feeling good tonight. Thanks for all the good vibes!

     

  

Finding happiness (from FB 6/8)

Today was consolation Day 1, take 2. Except Adeline’s ANC (absolute neutrophil count) is still too low to start chemo. Neutrophils are a type of white blood cell that fight infection. It’s really important for her bone marrow to recover before this next round, because the chemo is really intense. We were disappointed, but we had an amazing conversation with our oncologist. After going over her numbers and our plan moving forward, Dr. Kane looked at Adeline and said, “How are YOU? What has been the hardest thing for you throughout all this?” He then asked the same of me. He acknowledged all the things that have been taken from her, he talked about the unfairness of it all, and he asked about her fears. Then he talked about choosing how we respond to disappointments and struggles in our life, which really is the only thing we can control. It made me think of one of my favorite quotes from Albus Dumbledore. So, we will choose to find happiness during this second unexpected down week, instead of focusing on the fact that Adeline’s body isn’t quite well enough for chemo (what?!) We’ll play games, watch movies, take naps, and enjoy another quiet week with our little family. And then we’ll carry that joy with us as we head into a dark and scary unknown.

"Happiness can be found even in the darkest of times, if one only remembers to turn on the light." 

Taking control (from FB 6/1)

The last few days have been difficult. Our own little world has been crashing down around us for the last six weeks. And now the world around us is in upheaval too. And I just haven’t had the emotional or mental capacity to process both at the same time. But that doesn’t mean that the social injustices happening in our country are not deeply important to me. They absolutely are. I just don’t have the words right now. 

This weekend we learned that Crawford is not a match for Adeline. While a transplant is not definitely on the table, I was hoping for our own peace of mind that we’d know we had a perfect match, should the need arise. Then today Adeline was set to begin her consolidation protocol. I had read about all her new meds and their side effects. We marked out the calendar, each day between today and August 10th, with the protocol day and all the meds she would be taking. And then today, her ANC (absolute neutrophil count) was too low to start chemo. I can’t explain the disappointment I felt at her NOT taking chemo. Maybe it’s knowing that the later we start, the later she’s finished. We’ll try again next Monday. And while I’m thankful for her body getting more rest, it’s just a reminder that we really can’t control what’s going on in this journey. BUT, tonight, we took control over what little we could. With Adeline’s hair thinning rapidly now, she lost the rest of it on her OWN terms. It broke our hearts, but in true Adeline fashion, she joked and smiled the whole time. She held her ponytail and said, “Someday this will be in *my* presidential library.” Someday, my love. 

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. 

     

On being a Gryffindor (from FB 4/23)

Everything went well with port placement and her lumbar puncture. She will begin her first IV chemo in about an hour. Still no official diagnosis, but our oncologist has sent her case to the Mayo Clinic and Johns Hopkins. The first 29 days are the same treatment for the two types they are looking at, so we feel good proceeding. Yesterday I mentioned some hard conversations that Adeline initiated, and after processing, today I want to elaborate. She had seen a St. Jude’s commercial that said 1 in 5 children with cancer will die. And while those are not the statistics for her diagnosis, it still scared her. So she asked her doctor about it. And what he said will stay with me forever. He likened death to “Voldemort.” And just how no one in the books wants to call Voldemort by name, no one wants to talk about death and dying because it’s too scary and overwhelming. But it’s an inevitable reality for all of us. And then he said that while Harry was still afraid, he had the bravery to call him by name and to face him head on. And that’s my Adeline. A true Gryffindor. 

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.