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 Sarah Bolenbaugh
Abigail is my older child, now 6 years old. In March 2008, she was diagnosed with Pre-B Lymphoblastic Leukemia with MLL Rearrangement, otherwise known as Infant ALL. It is a rare and aggressive form of leukemia with dismal prognosis.
Abigail is lucky. She survived. For every Abigail, there is a baby that doesn’t survive. There is a Piper, a Matthew, an Evelyn, a Tyler… Here is Abigail’s whole story in 90 seconds. How am I supposed to fit two years of hell in 1,000 words or less?
Here’s a brief introduction, or as I like to call it … the worst case of mommy guilt ever. At around eight months old, Abigail was sick for the first time. Her only symptom was a high fever. [Sidebar, one of those feverish evenings, as an attempt to make Abigail laugh, my husband put a pink bandana on her head. I told him to take it off because she looked like a kid with cancer. Oh yeah – and that’s not EVEN THE BEGINNING of the mommy guilt.]
It turned out that Abigail had a urinary tract infection. Long story short, she was in and out of the doctor about five times over the course of a month. However, even after a round of antibiotics, she didn’t seem to be feeling better. Her fever was gone, but she wasn’t eating or sleeping well and just seemed to be missing her spark. She also suddenly hated to be on her stomach. I had chalked it up to teething, which in this short synopsis sounds silly. However, at the time, believe me, it totally made sense.
My husband wanted to take her back to the doctor – I thought he was overreacting (truth be told, I had already taken too many days off work and really didn’t want to miss any more). So, husband agreed to take Abigail to the doctor. Um, yea. So…..he wasn’t overreacting.
Abigail had a white blood count of 394,000. Her blood had so many white blood cells in it that it was pink. Her blood was pink. We were told that she had a chance of having a stroke at any moment. If she survived the night, she had a 40-50% chance of making it to kindergarten. So if we are having a mommy guilt war – I win. Unfortunately, I so totally win.
Abigail’s prognosis was grim. The proposed cure was to put her through one year of heavy dose chemo followed by a year of low-dose chemo. Her leukemia was very aggressive. Therefore, the treatment was aggressive. If the cancer didn’t kill her, there was a good chance the chemo would. Our oncologist told us, in fancier less caustic words, that they gave her the maximum dose of chemo that they could without killing her. If the left don’t get ya, then the right one will.
Abigail was one tough little baby (remind me to tell you the story about how she got a skull fracture from an IV pole falling on her head – another 20 points on the mommy guilt-o-meter.) However, her stomach was a delicate little flower. Chemo did not treat Abigail’s belly well at all. The nausea and associated puking were awful, but the diarrhea was worse. The chemo stripped her gut. The food would go in and shoot right through. At her worst point, which lasted for a few months, she would poop every 45 minutes. Every 45 minutes, even at night, I would change her diaper. One night, I decided to try skipping changing the diaper (I thought that maybe I could change it every other poo). That experiment resulted in a diaper rash that burned the skin off her bottom. [Ahem – mommy guilt].
Between the puke and the poop, we were doing at least three loads of laundry a day. We would go through multiple sets of bed sheets at night. My husband became the expert bedsheet changer. He could change a set of sheets in seconds (we’re talking Formula 1 tire change out speed). We would have at least two sets of sheets at the ready for night time switching. I even folded the sheets in a particular way so that they were easier to throw out onto the bed. [Sidebar – to this day, my husband has not lost his skill. If a child barfs in the night, those sheets are changed out in 60 seconds flat – zzzzoooom.]
Abigail was skin and bones during this time. The chemo turned her skin a greenish hue. It’s hard to maintain weight with 95% of what you consume comes back out. Through her treatment, she developed a fungal infection of the brain and lungs, chronic C-diff, RSV, and PCP pneumonia. I don’t have time to get into what they are – but if you google those terms with cancer, the results are not promising. If the cancer doesn’t kill you, the chemo will. That’s no joke.
How does a baby deal with these horrors? Abigail reacted by closing her mouth. For 18 of her 24 months of treatment, not a sound came out of her little mouth; and absolutely no food went into that sweet little mouth either. She was fed through a tube that went through her nose down into her stomach. A wonderful speech therapist taught her sign language.
Besides not opening her mouth, Abigail coped with these horrors shockingly well. Have a nurse stick a huge needle in my chest? Sure – you don’t need to hold me down. I’ll even lift up my shirt for you. Stick a tube down my nose and tape it to my cheek? Hey – as long as you have Backyardigans on – we are all good. Bend me in half for a spinal tap? As long as Nurse Darryl is there…and some bubbles (and fentanyl) – it’s all cool, man.
All Abigail needed was that one piece of control. She couldn’t control the horrors going on around her, but she could keep her mouth shut, and she did with a smile on her face.
Over five years later, Abigail is alive. She is more than alive. She is smart, thriving, athletic, talkative, sweet, and compassionate. Shockingly, she has no long term effects (yet). She doesn’t remember a thing. Me? I’m scarred for life, but better me than her, right?
Full disclosure, Abigail and I are fast friends. And her Mom rocks. And I miss them since they moved away from Chicago.
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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Mary Tyler Mom 