Our Journey with Cancer

On June 7, 2016 our then 13-year-old daughter Alex, was diagnosed with Very High Risk Acute B-Cell Lymphoblastic Leukemia. She is currently doing well, but the year following her diagnosis changed our lives in ways that were completely unimaginable. Every priority shifted immediately. We almost lost her several times. Her care became the only focus.

The next year was a roller coaster of crazy. We were in the hospital every month for at least a week due to complications from treatment. Alex’s pain was managed by large doses of opiates. She became intermittently insulin intolerant. Her body was at times acting like a diabetic, yet not responding to insulin as expected. We lived in a constant state of reaction and fear. The hospital go-bag was always packed. We were on high alert for the entire year. We almost lost her several times.

In June of 2017, I reached a breaking point. I finally asked our social worker for help. I no longer felt emotionally or intellectually capable of handling Alex’s care. The struggles we were having felt insurmountable.

We were offered an opportunity to go to a camp for families in like ours.

We had not applied for the camp.

We didn’t even know it existed.

The camp is called Camp Firefly. Camp Firefly changed our lives. Our time enabled us to change from reacting to crisis and being able to intentionally choose our next steps forward. Camp Firefly gets an entire post to itself.

The week after camp, Alex had her next round of chemo and she had NO issues with her blood sugar. She still had lots of nausea and pain, but she felt well enough for us to start planning school and have some friends and family visit. She was able to run sound for a local production of “Thoroughly Modern Millie”. She even went with me to meet a new pastor. That was a super conversation.

The 2^nd treatment, however, was awful. We were back to sugar issues all over the place, steroid induced insomnia, and extreme hormone fluctuations. So, we returned to the hospital. We had to push for questioning the protocol we were using. Her reactions weren’t as expected or consistent. Then the endocrinologist found some information about Propofol (the anesthesia used for the spinal taps) causing hyperglycemia in diabetics.

We decided to change the anesthesia and it changed our world. Alex had no sugar issues, no pain and no mood swings. She even went to a school pep rally!

We thought a corner was turned…

In October, Alex fell and broke the radial bone in her left arm. She held up better than the adults. Jimm was shaky for a while. He felt so guilty for not being there to catch her.

Then, Alex had another spinal tap. The Anesthesiologist didn’t believe that the anesthesia could be causing Alex any issues. He made a unilateral decision to use another anesthesia. We were in the hospital the very next day with sever back and hip pain, high glucose issues and insomnia. She needed morphine every 3 hours for 2 days. Her pain became manageable, but movement became very painful.

In December, Alex’s hip and shoulder pain became pretty intense, to the point they were considering giving her methadone. After the propofol incident, I learned to listen to my instincts. I pushed for an MRI of her major joints. We discovered that she had AVN (Avascular Necrosis) in both hips and shoulder joints caused by the steroids. Basically, that means the bones in those joints were dead due to lack of blood flow. The only course of action at that point was to discontinue the steroids from her treatment protocol and work with an orthopedist to repair her major joints.

My heart broke. They wouldn’t discontinue the steroids before when they caused all of the other issues (i.e. sugar, hormone, insomnia, etc.) because of the high risk of the cancer reoccurring at a later date. I understood that it meant that it was highly likely her cancer would come back within the next 5 years. AND she was going to have to spend the next year or 2 confined to a wheel chair with pain.

In the middle of all of this, Alex developed a low-pressure headache after a spinal tap. Again, her pain was so intense that she received morphine ever 2 -3 hours for several days.

Then in May…we received really good news at the last clinic visit. It has taken me a little bit to really understand it all, but here is the long and short of it….

The newest data coming out of the previous protocols say that kids with hypersensitivity to the steroid regimen (Avascular Necrosis, Hyperglycemia, Insomnia, Neuralgia, etc…) have a much better prognosis. Their version of the cancer is also hypersensitive to the steroids.

So, we still have a long road ahead due to surgeries and physical therapy, but not due to cancer…