• dkudipietro

Beyond Survival

Updated: Aug 17, 2019

She Has Cancer: Post 4, Series 1

My daughter made it. Two and a half years of treatment, in remission at 7 1/2 years, and 10 years after that, she was considered cured. She lost her hair, had 7 surgeries, countless procedures, shots, spinal taps, bone marrow biopsies, blood draws, time in the hospital and treatment center, and specialists. During treatment, a nurse failed to turn on her pump for the very first infusion, so it was necessary for her to receive twice the amount of chemotherapy in a 12 hour block. She immediately forgot how to tell time and which hand was left or right. Agony! The next day I had to keep from launching myself across the room in a full scale attack. That nurse was let go but the damage was done. The chemo agents literally thin the myelin sheath around neurons, and the faster rate obviously increased the damage. I am happy to say that my daughter did eventually relearn both skills.

When she was first diagnosed, she was identified as having medium risk, type B leukemia. That segmentation determined what her treatment protocol and roadmap would be for medications and planned procedures. To break the blood-brain barrier, chemotherapy spinal infusions had to be done, where they performed a spinal tap, drew out a certain amount of spinal fluid, and replaced it with methotrexate. Otherwise, leukemia would hide protected in the brain and remission could more easily occur (for boys, it also hides in the testes).

It's funny what you of the things I dreaded most about spinal taps was the sedation. Patients have to remain totally still (the long needle into the spine is dangerous), so there were two options: Valium and being totally awake in an altered state, or twilight sedation where they are not fully under. My daughter was never comfortable with the former. Turns out that girls typically do not respond well to one of the agents (versed) and often react poorly; they don't like the loss of control. She would yell and curse as she battled to wake up. During that time, I had to keep her safely on the padded examination table for an eternity (really 2-4 hours). I didn't even know she knew the words echoing off the walls and down the pediatric hallways! She did this the whole 2 1/2 years of treatment as she fought to regain full consciousness, once even kicking me hard enough to crack two ribs. My daughter is a fighter.

One of the most painful "mom" moments had nothing to do with treatment. After being ripped from school, activities, friends, and family, spending a week in the hospital with surgery and being blasted by chemo, she was finally home for the first time after being diagnosed. She spotted her best friends from the neighborhood cutting across our front yard and joyfully called out to them through the window. Since she was immunosuppressed, she couldn't run outside. They ignored her.

Her crushing disappointment and sorrow threatened to smother me, and I choke a little even remembering it now more than a decade later. I will never forget her expression as she slowly turned from the window. What we discovered after multiple phone calls and apologies was that one of the girls was extremely jealous of the attention and gifts my daughter was getting showered with, and negatively influenced the other girls. Her mom, in an effort to protect her, had told her my daughter was a "just a little sick." Parents, be truthful but hopeful! You don't need to share specific details, but be honest. For example, "your friend has cancer and is sick, but she's getting the medicine she needs to get better. People are giving her lots of gifts and cards because that's how they show they care about her."

There were other challenges. Lots of well meaning people brought a new set of issues, for example, the usher in Church who walked up and took her hat off (horrified, tears and embarrassment, who touches someone else's kid?), the lady who took one look and said right in front of my pale, tired, cancer weary daughter "what's wrong with her?" and the mom who complained to the principal and me that her son was going to catch cancer from my daughter. There were struggles with teachers, administration, getting compliance with accommodation plans; we eventually had to hire an Educational Attorney . Got bad advice about whether or not to proceed with getting my daughter a 504 plan vs. an IEP, which caused a long lasting, negative impact.

In spite of it all, I am grateful. That she survived, and is a beautiful, accomplished, intelligent young woman with a wicked wit. That we had priceless family, friends, and a school community who helped shoulder the burden, incredible nurses and doctors, social workers, and the ability to laugh and celebrate as much as we could. That my husband was a rock through it all and we grew closer despite the fact that 80% of marriages end as a result of a child's serious illness. The experience confirmed what we already knew, that life is precious and can be cut short. Brendan Burchard calls it mortality motivation and earning your blessing. It is beyond survival. It is living with intention. It is the gift.

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