This is the tenth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna’s thirty-one months of treatment.
The cracks were beginning to show. Cancer can be relentless and a stem cell transplant is not for the faint of heart. By the time we were discharged, Donna had spent thirty-one days in the hospital. Each day was harrowing in its own way. This type of post can’t do it justice, and honestly, the transplant alone could use a book. Or manual. Yeah, a manual for those who come after Donna, might be better.
In the broadest of strokes, these are just a few of the things that happened in the tenth month of treatment:
- Both Christmas and New Year’s were spent in isolation. Santa still found Donna and New Year’s Eve was spent in the company of some of the most amazing families I’ve ever met. Being bored, I planned a Happy, Hopeful New Year’s Eve party for the staff, patients, and families, complete with invitations, bubbly cider in plastic champagne flutes, music, decorated IV poles, dancing, and a seriously amazing vibe. Possibly the best New Year’s Eve party, ever;
- A first bacterial infection complete with 104.7 degree fever;
- Mary Tyler Dad nicknaming me “the Mayor of 4 West” because of my tendency to chat up all the other Cancer Moms;
- “Poop soup,” which is as it is named. Copious amounts of the stuff that flowed like green beer on the 17th of March;
- Donna losing 12.5% of her body weight in three weeks and falling to 21 pounds;
- PT to re-learn how to walk and stand. This was the third time Donna learned to walk — the first at 12 months, the second after the initial surgery, and again after almost thirty days of lying in bed. She took my breath away each time;
- Suctioning liters of mucus from her mouth. A vile green bile that came from the depths of hell, or her guts, but for Donna, that was the same thing;
- A relapse scare one week after discharge that required an urgent MRI. While Donna was showing some of the same symptoms at her initial diagnosis, the scans came back clean;
- The appearance of two “worrisome” dots on a post-transplant CT. Those damn dots would not be resolved for two weeks while we waited to see if they would grow. They simply disappeared, though we lived in grave fear during the wait;
- Needing to prep our home for Donna’s return. That involved professional cleaning of all carpeting, rugs, upholstery, and air ducts. Grandma washing or boiling or bagging each of Donna’s gazillions of toys. God bless her. Returning home meant we were spared a stay at a transitional home, or temporary patient housing close to the hospital that is almost always required for transplant patients because of the frequent need for blood products and concerns about depressed immune systems. We lived just twenty minutes away, had moved into a freshly rehabbed home just six months earlier, didn’t smoke and had no pets. We were solid pediatric cancer citizens.
My head spins. A transplant is beyond exhausting, and as hard as Mary Tyler Dad and I had it, it was but a candle to the wildfire that Donna fought. Heat is a good analogy. This photo is a closeup of Donna’s hand while in transplant. The burn you see is a result of the chemo excreting itself transdermally. The toxicity of the chemo was literally burning Donna’s skin from the inside out. And what you see on the hand was duplicated on her ankles, knees, waist, feet and neck. Good Lord, cancer is a beast.
I could write more, but today there is no need to recreate the wheel. The following is an excerpt I wrote in Donna’s caringbridge journal that perfectly captures the anguish we all felt. It was written on the last day of this tenth month.
I feel like the worst mother possible to Donna these days. I find her frustrating and irritating and draining and unquenchable. I can not meet her needs right now. No one can. She feels terrible and does not have the tools to express that or deal with it easily. What I can do is be there with her and keep her company. That I am doing. With difficulty, but I’m doing it. And I’ll keep doing it. As long as she needs me there.
I’m also jealous of [Mary Tyler Dad]. Ridiculous, but true. In this sixth day of Unhappy Donna, he gets to go to work. He gets to go to the grocery store. He gets some space and freedom that I am missing and needing so completely. My gig is to be with the girl. And she needs someone all the time. Always and all ways.
Her pattern is that mornings are pretty good and she tanks in the afternoon before rebounding in the evening. [Mary Tyler Dad] described me as having whiplash and it is the perfect description. Round about 7 or 8 each night she perks up immensely and is ready to play and eat and socialize. I’m standing there reeling wondering what happened to the girl who just spent the past 6-8 hours wriggling or wailing in my arms. Where did she go? I’m so happy that she is gone, but it is hard to shift gears quickly.
I continue to believe that this can not be the norm for stem cell recovery, but am told repeatedly that it is. I find it condescending and dismissive for the docs to repeatedly tell us that Donna is handling all of this just great. How is this clingy, miserable, unhappy, twisted in pain, sad Donna handling all of this so well?
This afternoon Donna settled down for a nap after a much improved morning. No dairy products in her little system since yesterday. I had such hope for the afternoon. After 20 minutes of napping, over lunch I heard her cries, “Mommy change my diaper!” Poop! Hooray! With no movement since Friday, poop is welcome and something to celebrate. While changing her diaper, Donna uttered through tears, “You are not quite ready for a nap!” I felt in my bones that 20 minutes was all she would get today. She was okay for about half an hour before she started crying and wailing. She wants to go for a walk, she wants to play in the park, she wants to go downstairs, she wants to go for a drive, she wants to go on an errand. Anytime we would make a move in one of those directions, Donna would demand a new direction.
Finally she agreed to act on an errand (a quick trip to the dry cleaner), but on the way there cried and complained that I was driving the wrong way and she wanted to go home. My clothes weren’t ready (I wanted to throttle the gal behind the counter – – does she have any idea how difficult it was to get out of the house and into her store?) so we settled on a drive.
Donna took a cat nap after 20 minutes of silence, but quickly woke up wailing for Daddy, screaming, “Want to go to the hospital right now!” This poor, sad girl. I cannot describe what it is like to see your child suffer and know that you are incapable of making it better. My guess is that she felt rotten and knows the hospital is the place you go to feel better. For a 2 yo to know this is heartbreaking. Heartbreaking. And I’m the witch that won’t take her. I’m the horrible person that explains that we go to the hospital tomorrow. What must she be thinking about that? That I won’t bring her to the place that makes her feel better?
These are the moments of desperation. I can not help my girl. I can not relieve her suffering. I, in fact, prolong her suffering by rationally explaining that we will see the doctors tomorrow. It feels like certain hell. We are together in hell and it is cold and miserable and lonely and isolative.
And even on her worst days, Donna was still the coolest person I knew.