Have you ever had the wind knocked completely out of you? I mean, have you ever taken a solid, direct blow to your gut so hard that you could not physically get air? That’s what it feels like when someone says, “Your daughter has cancer.” And as those words filtered into my brain my eyes fixed on my motionless daughter, innocently unaware in her anesthesia-induced sleep; and for the rest of that conversation, all I heard was “Wah wa wah wa wah wah wah,” like I was in a PEANUTS cartoon.
Grace, the youngest of our four children, was diagnosed with Acute Lymphoblastic Leukemia (ALL for short) just two months after her second birthday. Because leukemia is cancer of the blood, there isn’t a tumor or mass to be removed and there are countless places for cancer cells to hide. As a result, the typical treatment for ALL is long: 2.5 years for girls and 3.5 years for boys. Grace was diagnosed in November 2013 and has about a year and a half left on treatment.
Admittedly, I am a Type-A, control-freak and Grace’s diagnosis made me feel as if I had just been stripped of every ounce of control. I was in complete shock and shifted into survival mode. I didn’t cry, I asked what was next. How were we going to beat this?
Because NOBODY messes with my babies, not even cancer. Think Mama Bear…on steroids. Think Cancer Mom.
I was very aware that everyone around me would feed off my energy and response…including Grace. This was something I could control and I was grasping at any shred of control I could regain. With that in mind, I slapped on my Mom Face, found my positive attitude and made it my job to get my daughter through this.
Since her diagnosis, Grace has been sedated under anesthesia more than 15 times, undergone 2 surgeries, an MRI, 2 Bone Marrow Aspirations, 12 Lumbar Punctures with chemotherapy injected into her spinal fluid surrounding her brain, 47 intravenous doses of chemotherapy, a dozen different types of chemotherapy, many ER visits and 4 inpatient hospital stays…and she still has a year and half left on treatment. Grace is fortunate that radiation therapy has not been necessary based on her test results—many children are not so fortunate.
Chemotherapy wipes out a body’s immune system and ability to fight infection in order to destroy the cancer cells. That weakened immune system is necessary for the chemo to do it’s job, but it makes our kids susceptible to illnesses. Illnesses that are annoying and irritating to most of us can be life threatening to children with cancer when their bodies are unable to fight back. Any fever over 100.4 F is considered a medical emergency and requires a trip to the ER. Before I was a Cancer Mom I didn’t even really consider that a fever. This susceptibility to illness is isolating. Our children cannot be around people that are sick with even the common cold; so we struggle with trying to strike a balance between letting our kids be kids (so much of their childhood and innocence is already taken away) and protecting them to keep them alive.
As Moms, we protect our children. We do our best to keep them safe and when something is wrong, we fix it. We make it better. That’s our job. I can’t make this better. Instead, I have to stand by and watch as my baby is poked, prodded, poisoned and robbed of her childhood. I have seen steroids transform my joyful, smiling toddler into an unrecognizable tantrum-throwing monster unable to smile. I’ve had to physically restrain my daughter as she is sedated for yet another procedure. I watch nurses suit up in gloves, masks and protective gowns to handle the chemo they pump into my baby’s body. I’ve spent nights awake holding my baby as she vomits from the chemo that is “making her better”. I have come to understand that her excellent prognosis with a 90% survival rate is based on her surviving 5 years from the date of her diagnosis. I now understand that survival is a tricky word that doesn’t factor in quality of life—her chances of developing a secondary cancer are dramatically increased and the long-term effects of chemo are overwhelming. I’ve had to explain all of this to her siblings, that are just babies themselves, and look them in the eye as they’ve asked, “Is Grace going to die?” I’ve had to keep our six pack functioning with some semblance of normalcy when this life feels anything but normal.
Cancer has changed our lives forever, but it’s not all bad.
I’ve learned to take one day at a time and find gratitude for the small blessings. We are blessed with an amazingly strong support network of family and friends. I am grateful that I trusted my maternal instinct that was telling me something was wrong. Grace’s cancer is treatable and she is doing very well. We are fortunate to live within 10 minutes of an excellent Children’s Hospital. I am more appreciative of our health. I have become more spontaneous (and dare I say less controlling) after being reminded that the only time we are guaranteed is right now. My priorities are better aligned, because I’ve realized that some things really just don’t matter.
I’ve learned that kids can’t fight this battle alone. In honor of September being Childhood Cancer Awareness Month (don’t worry, before I was a Cancer Mom, I didn’t know that either), please consider doing one of the following things to help:
- Donate whole blood, platelets, blood products. Our kids need a lot of transfusions to keep them alive.
- Donate art supplies, new toys, itunes gift cards, gift certificates for local quick serve restaurants, books, bright pillow cases, etc to Vermont Children’s Hospital.
- Know someone in treatment? Mow a lawn, provide a meal, do some laundry, offer to take care of a sibling, reach out. Make a phone call, send an email, drop a text. They are isolated and it hurts.
- Make a donation to www.stbaldricks.org , www.curesearch.org or www.alexslemonade.org to help fund pediatric cancer research.
Written By: Karen Robinson
Karen Robinson grew up in Vermont and has been married to Amos, her high school sweetheart for 15 years. As newlyweds they ventured to Boston for several years, but returned to Vermont to raise their family in Williston. Karen is a stay at home mom to their four children: Maggie (6), Beatrice (4), Max (4) and Grace (3). She is passionate about education, raising kind and respectful children and raising awareness for Childhood Cancer.