September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics. The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action. Read more about this series and childhood cancer HERE.
By Lisa Jacobs Gurevitz
When my younger daughter, Mia, was nearing her second birthday in November of 2011, we received news that no parent should ever have to hear. Our lives changed forever in the span of a 5 minute phone call as we were informed, "Your daughter has a mass in her brain."
We had taken Mia for an MRI of her brain after she fell off the weight and growth charts. After the call, we were in a state of shock and fear. Our lives had just been turned upside down. Outwardly we tried to keep things normal, especially for our older daughter, Rachel, who was just five years old at the time. Inside, my head spun with thoughts no parent ever wants to think about, what no parent should ever have to think about. After meeting with a neurosurgeon and coming to the realization that we were dealing with a brain tumor and furthermore, due to location, it is classified as inoperable, we were pushed even further into the darkest place imaginable.
A biopsy was done to determine tumor type (benign and generally slow growing, but a brain tumor nonetheless). A couple of weeks later she received a port to administer meds and draw routine labs to monitor her blood counts. We met her neuro-oncology team and chemotherapy started. The tumor presses on Mia's pituitary gland, which put her into an anorexic state. She looked horrible yet remained sweet, silly and playful.
Along with chemotherapy came the vomiting, fatigue and hair loss. We saw what fortitude a child really has, what they can endure. To boost her weight, Mia was put on 12 hour nightly IV nutrition. We thank our lucky stars for being matched up to the world’s best home health nurse. She taught us what we needed to know to manage the IV nutrition on our own. She made Mia feel at ease during her weekly visits. In addition, we spent every Thursday at the hospital for the chemotherapy protocol.
The hospital became quite important to us, like a second home. In a strange way, it gave comfort to be there because something was being done to help her. We were emotionally drained. Our friends and family took charge. We had rebuffed any offers of help, wanting to handle it all, feeling uncomfortable accepting help. It’s so much easier to give than to take. Friends and family persisted and schedules were created for meals, Rachel’s care, and ensured I had someone with me each week at the hospital. I was amazed and touched by the outpouring of concern and love that we received. It helped us function.
Dan worked harder than ever because we now had huge hospital bills that quickly piled up. He jumped in to help whenever he could during the day and would split duties with me at night. Our parents stepped in for long stretches of overnight stays. This was our routine for the better part of nine months until Mia was switched to another type of supplemental nutrition and chemotherapy. As is typical, Mia also had many inpatient admissions and ER visits.
It took months to accept Mia’s cancer diagnosis. For a long time I would refer to it only as a benign brain tumor. Denial helped for a while, but eventually I learned that cancer is just a word. It’s a really crappy word, but it certainly doesn’t define Mia. We force ourselves to keep our lives structured for both of our girls. While we live our forever “new” normal, cancer has affected every facet of our lives. We want to hide from it, outsmart it, and run as far, far away from it as possible. Yet it’s always there, infiltrating our family and our lives.
I mourn that old life; we will never get it back. We will never be able to wake up from the nightmare that comes with a cancer diagnosis. But day by day we accept what we can and try to function the best way we know how. While much of the time it feels as if we are waiting for the other shoe to drop, it has also taught us to realize what truly matters in life.
With the countless horrors that come with a childhood cancer diagnosis, there are some silver linings too. We have met other families living with cancer that we have come to care deeply about. The Cancer World bonds us. If we could only say we met at school, the park, Starbucks. We revel in the good news about our kids and our hearts are heavy when the news isn’t so great. We support one another in a way that only other parents going through this awful situation understand. We are in the cancer trenches together.
Seeing how Rachel, entering second grade this fall, handles it all is bittersweet. I am proud of her and heartbroken for her at the same time. It’s as hard for her emotionally, as it is for Mia physically. My sweet first baby, this has shaped her life forever.
It takes a Village to deal with serious illness. Our parents walk thru this with us too. Their lives are shaken having a grandchild with cancer. Family members near and far are affected. Our friends have been incredibly wonderful, loyal and steadfast. Thank you for being here for us since day one. Getting through this wouldn’t be possible without the help, love and never-ending support from our friends and family -- Mia’s Peeps.
This story would be lacking without a huge shout out to Mia’s medical team, our Dream Team. Your care, knowledge and never ending compassion as you guide us thru this journey means the world. Thank you for always treating Mia as a person first and a patient second.
So how is Mia after 18+ months of treatment? She’s a freaking warrior. She’s gained weight, she’s grown, but she’s still at least a head smaller than other kids her age and likely always will be the smallest of her peers. She’s outgoing, outspoken, loving; full of sunshine and sass and throws tantrums like any 3 1/2 year old. She’s in preschool, attended camp and loves her weekly dance class and horseriding lessons.
Mia’s scan this past June was her third stable scan in a row and she’s currently off treatment. Her body will get a break, and while we don’t know how long that break will be we HOPE it’s for a REALLY long time. While this is something to be happy about, it brings an entirely different set of emotions and anxieties. She will continue to get quarterly MRIs, but now there’s not even the chemotherapy we love to hate protecting her.
So what do we do? We move forward while collectively holding our breath until her next set of scans. We try to embrace this life and everything that comes with it -- the good, the bad, the barf, the bald.
If you want to keep up with Mia and become one of her peeps, you can find updates at Mia the Warrior and Her Peeps on the Facebook by "liking" her page.
If you're looking for all of the posts in the Childhood Cancer Stories: The September Series, you can find them catalogued HERE.
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