‘I noticed a change in Macie. She was irritable, tired. I kept chalking it up to pandemic blues.’: Mom details parenting daughter with leukemia during COVID crisis

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“The smores, the campfire stories, the games, kids riding bikes and playing tag at all hours. It was going to be a weekend to remember, Memorial Day weekend 2020. Just like the rest of the world, we had been quarantined for months. Macie had been at home with me while I tried to balance a full-time job with being a full-time mom. It was the middle of May when I first noticed a change in Macie. She was irritable and tired. I kept pushing the thoughts aside chalking it up to a growth spurt, the changes in her routine, maybe a bit of ‘pandemic blues.’

family
Courtesy of by Bonnie Miles

If I am being completely honest, I just didn’t want anything else to be wrong. You see, her father is an alcoholic. He was sober for about 6 months when he relapsed at the beginning of the pandemic, and we were living separately while trying to figure out what the next steps were. We tried to make her daily life as normal for her as possible, but it was far from normal. I had expected the change of pace to cheer her up. I expected her to be joyful, running in circles, to demand smores for breakfast. Instead, she was tired, irritable, and just wanted to be held. I had the confirmation I needed that something was truly wrong.

At 1:55 p.m. on May 27th, 2020, the pediatrician called to say that the results of her blood test were showing an abnormal number of white blood cells which is consistent with a Leukemia diagnosis. I am sure the doctor explained things in much more detail, but I cannot remember any of it. My brain shut down. I kept repeating to myself, ‘Okay something is wrong, breath, you need to listen. Bonnie something is wrong, listen.’ The pediatrician finally said, ‘Is she in the same condition as she was earlier? We need to determine if you can drive her or if we need to airlift.’ Within an hour of the initial call, we were on the road driving the 168 miles to the nearest children’s hospital.

Due to Covid-19 protocol, only one parent was allowed in the hospital. As I walked my daughter through the long, cold, and scary hallways carrying her and rolling our suitcase, containing whatever random items my frazzled mind remembered to grab, I could feel the exhaustion and despair immediately. It was 7 p.m. and there were people everywhere. Every room filled. I could not stop the tears from rolling down my face.

tired
Courtesy of by Bonnie Miles

As soon as we got into our room, I was faced with the consequences of my actions. To calm Macie down during our drive I told her that we were not going to the doctor for her, but for me. She was perfectly happy during our drive, but the second we walked into the hospital room and the nurses started talking to her about what they needed, she looked at them directly and said, ‘No, we are here for my mom.’ Here is where I made my second mistake. I said, ‘Baby, can you let the nurses help you show me what to do.’ These two lies are my greatest regrets. Had I been honest with her the next few hours may have gone differently.

The initial results of her blood test showed that she needed blood transfusions, immediately. To do this they needed to place IVs. We were escorted to a room specifically designed for placing IVs and giving shots (what we call pokes). This is where the lies I told became a problem. Macie had already had her blood drawn earlier in the day, and immediately knew what was coming. She began to scream and cry telling me that she wasn’t going to show me. That she wasn’t going to let them poke her again. I held her on my lap, and while we both cried, I tried to explain to her what was really going on.

I told her, ‘Honey, there is something wrong with your blood. The doctors need to put a needle in your arm to start to give you medicine to help you get better.’ She screamed at me, ‘No mom I feel better, you are the one that is sick.’ It took two nurses, me, and one doctor to hold her down long enough for them to get the IV placed. Macie screamed the entire time while I cried. When the IV was placed we snuggled up together in that room for a while crying. Macie looked up at me and said, ‘No mama, you don’t cry, just me.’ I wish that I had been able to hold back the tears for her.

We were admitted into the hospital on May 27th, and on May 28th she was diagnosed with B-cell Acute Lymphoblastic Leukemia. On May 29th she had a central venous catheter (port) placed in her chest, a bone marrow biopsy, and her first doses of chemotherapy. While Macie was having this procedure Josh and I were allowed to be together for the first time since we had arrived at the hospital. Since only one of us was allowed in the hospital, we decided to take a walk. During this walk, we discussed what the next steps were going to be. I said, ‘I don’t want to do this alone, but I definitely will not do it with you if you are drinking.’ His response was, ‘I know, I’m done.’  He has been sober since April 2020.

dad and daughter
Courtesy of by Evelyn Gamboa

We were in the hospital for a week and a half. The three of us had not been in the same room the entire time. When we were finally released from the hospital on June 6th it was a wave of emotions. We were finally all together but heading home without any medical professionals. It felt like when you leave the hospital with a newborn, and you can’t believe they are just allowing you to take this tiny human home when you have absolutely no idea what you are doing.

The next six months of treatments were an emotional roller coaster. For the first 30 days, Macie had to take a steroid twice a day, which gave her insomnia, muscle aches, an insatiable appetite and made her angry. We had to make the three-hour drive for treatment every five days. These trips were the most painful. Due to the steroid and Macie’s body aches, it was hard for her to sit in the car seat for an extended period. On some trips, she would scream and cry the entire drive. I remember being so thankful for the stay-at-home order because there wasn’t any traffic; crying in traffic would have made it more difficult to navigate. During this time our family was invaluable. Between the meals they would make, the house cleaning, and the calls just to check-in and ask if we needed anything were so important to us.

Our second hospitalization happened two days before Macie’s fifth birthday. She had low ANC (Absolute Neutrophil Count) and spiked a fever. We rushed her to our local Emergency room where they did a blood culture and began IV antibiotics. The doctors did not feel comfortable with us driving her to our children’s hospital, so she was airlifted. On the day of Macie’s birthday the doctors, nurses, and even our roommate all brought Macie presents, decorations, and sang Happy Birthday to her. They truly made a birthday in the hospital a wonderful experience for her. We were discharged the same day, and when we got home, she had found our house decorated to an extreme only her aunt, cousins, and grandma could have accomplished. The happiness on her face was absolute magic.

door
Courtesy of by Bonnie Miles

Acute Lymphoblastic Leukemia treatment consists of six phases: Induction, Consolidation, Interim Maintenance I, Delayed Intensification, Interim Maintenance II, and Maintenance. The amount of time it takes to get through the first five phases depends on how well chemotherapy during each phase is tolerated. By December we had made it to the Delayed Intensification phase. During this phase, there is a two-week stint of daily oral chemo, as well as an IV infusion of a drug called Cytarabine.

We were very fortunate to be offered a spot at the nearby Kiwanis House where we had the ability to park a travel trailer. My parents took time out of their own busy lives to drive their trailer down for us to live in. This allowed Macie and me to be a five-minute walk from the hospital. We had our space where we could cook our own meals. I was able to work from the dinette while Macie would play games, watch movies, and nap. The first week of treatment went well. We would walk to the clinic each day, spend 3-4 hours getting her infusions, and then we would walk ‘home.’ I remember being so thankful that the weather, while a little chilly, was still cooperating. It was sunny, and the leaves were still falling, leaving behind beautiful colors everywhere we went. During our walks, we would chat about the colors on the trees, the Christmas decorations, and of course what we thought Santa was doing at that exact moment. The second week, however, after getting home from one of her infusions Macie said, ‘Mom, take my temperature I feel hot.’ Her fever spiked to 102 degrees.

The difference between our local emergency room and the children’s hospital emergency room are astronomical. The moment we walked into the door we were rushed to a private room where at least six doctors and nurses started asking questions, hooking up IVs, taking temperatures. We were in this room from 3 p.m. until midnight. Macie and I were both so hungry, but again due to Covid protocol I couldn’t leave, and no one was allowed to bring anything in. At one point Macie was so hungry she was screaming at me, ‘Just leave and get me mac n’ cheese!’

A kind doctor soon appeared with some mandarin oranges and a bowl of macaroni and cheese. She was my saving grace that day. This hospitalization lasted from December 9th to December 14th. Her fever was consistently above 100 degrees for four days. On top of the fever, Macie was still taking all the chemo medications. Each day, we tried to find little ways to bring her joy. We decorated her room for the holidays with items that the staff brought us, but the highlight of this stay for her was roaming the halls to look for the Elf on the Shelf. It was a daily activity that she woke up excited to do. Whoever decorated the halls on the pediatric oncology floor and hid the elf each day did a fantastic job. Each day we would find new decorations to look at, and it took hours to find that elf.

This was the first Christmas we spent just the three of us at home. I woke up early and turned only the Christmas lights on, started a pot of coffee, and waited. Watching Macie walk out, her tiny frail body and bald head glistening from the glow of the tiny lights with pure magic in her eyes was the highlight of my life. She had been so sick for so long, but this, this perfect moment of childhood amazement couldn’t be taken away from her. We spent the entire day playing with new toys and enjoying each other’s company. It was the best Christmas I have ever had.

Making it to the maintenance phase of Macie’s treatment felt as if we had finally finished the marathon. This phase lasts for 2 years but isn’t as intensive. We only make the long trek once a month, take oral chemo daily, and do chemo infusions once every three months. Did you catch how I said ‘only,’ this phase of treatment is still intense but at least Macie is feeling better and acting more herself.

mom and daughter
Courtesy of by Bonnie Miles

To celebrate making it to the maintenance phase we planned to take a family vacation to Maui. We had planned the trip for months. Planning the places we would see, the restaurants we would eat at. Macie and I could not wait to spend the days on the beach making sandcastles and searching for mermaids. Josh was excited to go on a fishing trip. The day we were supposed to leave, Macie’s blood counts had tanked from her oral chemo. She would not be allowed to fly. We couldn’t bring ourselves to tell her that we weren’t going to go on a vacation.

Especially after all she had been through. Within an hour Josh and I had booked an entirely new trip to Disneyland. We booked the hotel, bought tickets, and made park reservations. This was a risky decision with her being neutropenic but since we drove, masks were required inside the park, we were twenty minutes away from a major hospital, and we were able to get the Disability Access Service for Macie, we went for it. This was the best decision we could have made. Macie was so happy, she absolutely loved to see all the characters, and her favorite ride was Thunder Mountain (she calls it Lightning Mountain). We all had the most amazing time, and we would make this decision again in a heartbeat. She needed a happy moment, and I am so glad we were able to give it to her. At her next blood draw her counts jumped astronomically, and I have no doubt it was because of the happiness she felt on this trip.

family photo
Courtesy of by Bonnie Miles

Cancer has a way of sucking everything out of you. Yes, Macie was the one diagnosed but cancer doesn’t just attack the diagnosed. It attacks the entire family. Its job is to take rip you from the inside out, and that is exactly what it will do if you let it. It’s taken a lot of therapy and time for me to accept that this is our new reality. Even when Macie’s treatment is over it won’t really be over. There will be follow-up scans, trauma to work through, chemotherapy side effects, and more follow-up scans. She will never be allowed to just be tired or have a fever. I will never not wonder, ‘Is her cancer back?’ I let this reality consume me for the first year. I would go into hyperdrive to make sure that Macie got what she needed, then crash into an overwhelming depression. While I still have moments where it seems like the depression is going to consume me, I have found that channeling my energy into advocacy and helping families like ours is healing.

One day I want Childhood Cancer Awareness month (September) to be as big and well known as Breast Cancer Awareness month. My major goal is to start a nonprofit to provide families like ours with air flight insurance, but for now, I am settling for running small fundraisers to buy items that families need when they are admitted into the hospital. My love for Macie has always kept me going but channeling my anger and pain into making a difference is helping me to show Macie that the bad things that happen to us don’t have to be what define us. We get to decide that.”

beautiful
Courtesy of by Evelyn Gamboa
mom and daughter
Courtesy of by Evelyn Gamboa
family photo
Courtesy of by Evelyn Gamboa

This story was submitted to Love What Matters by Bonnie Miles from Redding, California. Follow her journey on Instagram, donate to their fund, and wish list. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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