Tag: stem cell transplant

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Donna’s Cancer Story: Spring

This is the thirteenth 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 first day of this month was Easter, which seemed fitting.  It was spring, the season of symbolic rebirth.  To watch Donna during this period was to watch a flower bloom, a tree green, the grass sprout.  You know that first day of spring when you look up and the trees are covered with leaves and you realize, “It’s spring!”  That’s what every day was like during this month.  I never stopped being surprised that the little sprite in front of me was Donna and that she was out of treatment. 

Donna strolling

There was a fine balance between learning to trust in her health and reeling over her vulnerability.  It was easiest to enjoy the girl in all her glory and feel the fear, the ever present, never ending fear, away from her.  We had just transitioned Donna back to her own bedroom after months of her sleeping with us.  While we missed her and waking up to her little perfect face, the bit of space was useful to have some time together to talk and think about what had happened to our family. 

As Donna’s immune system matured we were allowed more freedoms, including being able to enroll in a story/art course with other toddlers.  Donna really liked these classes and had a great time.  She was a bit more clingy than her peers, but was attentive to the reading and really liked to get messy with the art materials.  This class was the first opportunity Jeremy and I had to see Donna in the company of her peers without cancer.  Our Donna, our beautiful girl with her peach fuzz and slim frame, was very different than the other kids we were seeing.  While they were jumping and running and shouting, she was reflective, empathic with the story characters, climbing on her parents.  She could not run or jump or push the hair out of her eyes.  That hit us hard and was the undeniable evidence of some of what cancer had cost our girl.  What it hadn’t cost her was her keen smarts or sweet nature.  Those were two of Donna’s cardinal traits that cancer did not fiddle with. 

Donna at park

Donna is mugging for the camera in this shot at our local park.  Parks were a boon throughout Donna’s many treatments as she could be outside with others when she could not be inside with them.  The other parents looked at us funny when we sanitized the swings and slides before Donna used them, but how were they to know what Donna had been through in her short life?  To them we were just germophobes. 

Another place we were allowed to go again was the market.  Donna was my girl, keeping me company at the grocery store, but only with precautions.  We were advised to only go at off peak hours and the cart required a serious wipe down before Donna could sit in it.  Again with the looks.  There was nothing that could be done.  You do what you need to do for your kids. 

With Donna, though, the looks and worries fell by the wayside.  She was the best medicine for whatever ailed you.  Even something as simple as shopping for groceries became an opportunity to be charmed by the cutest little cancer survivor you would ever meet.  With spring arriving and the weather improving, Donna helped us appreciate all that was right in the world.  One day in the parking lot at the market, I wiped the cart down, put Donna in it, then turned to get my bag out of the trunk.  I heard her laughter, turned back, and saw that the strong wind had started to roll the cart away from me.  I ran to catch it, but Donna said, “No, Mama, no hands, just the wind!”  She loved the freedom and the thrill and the unexpected movement.  This started a tradition that carries on with Mary Tyler Son to this day.  Entering and exiting the store, I run with the cart then push it ahead so he can feel the wind and freedom himself.  He loves it just as much. 

I wrote in the journal this month that being with Donna was like being with a Zen guru.  She was completely open to and aware of the beauty around us in everyday life.  “We are out in the beautiful world!”  “Look at the sun!  Look at the clouds!  Look at the trees!”  It was impossible not to feel her joy when you were in the midst of it.  We saw with new eyes, Donna’s eyes, and it was lovely.

Tomorrow:  Mother’s Day

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Donna’s Cancer Story: Recovery

This is the eleventh 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. 

Just a day after the dismal day I wrote about yesterday, Donna seemed to turn a corner.  Our stem cell doc thought some of the intense pain and discomfort Donna had been experiencing, the writhing and moaning, could be attributed to lactose intolerance.  Quit the dairy, he advised, and within a few days she should feel better.  We did and she did. 

Turns out that the part of our body that breaks down lactose is the lining of our small intestines.  The potency and toxicity of Donna’s stem cell transplant chemotherapy caused her intestinal lining to shed, leaving her no means to process the lactose her body was craving.  Donna was so hungry after her return home and we had been more than happy to accommodate this hunger with her favorite foods:  milk, mac-n-cheese, yogurt, cottage cheese — a dairy farmer’s dream.  And yet, that was the agent of the pain and struggle we had been seeing.  We made the necessary changes and Donna transformed before our eyes.  The eight hour sessions of misery in my lap shortened each day.  Eight hours became six then four then two then poof.  “Mama found a cottage cheese that doesn’t hurt my belly!” is something Donna would joyfully shout as she ran up and down the hall.

And suddenly we learned that Donna’s treatment was over.  We had been prepping for the second stem cell transplant, dreading it, knowing what horror the first one had brought.  The docs had left the decision to us, we were to decide to move forward with the second one or take a gamble on one and done.  For the first time, Mary Tyler Dad and I disagreed.  We were torn, but knew that consensus was crucial.  That was its own special kind of hell.  But early one morning, Donna’s oncologist called to tell us that the team had taken the second transplant off the table.  They had just reviewed all numbers and determined that second transplants had a 20% mortality rate.  Given that no one knew if it carried any benefit (some cancers are only cured with two), the team agreed it was too risky.  Hallelujah. 

Donna feeling better

Hallelujah, hallelujah, hallelujah, hallelujah, hallelujah.  And so began our life after cancer, though that brings its own fears and concerns.  For the first time in eleven months, there would no strategy, no tools to fight the beast.  We were left to hope and believe that the beast was gone.  Papillary meningioma, that had had its way with Donna, had left the building, but we struggled trusting this.  We were shell shocked and thrilled and tired.  So very, very tired. 

Donna, though, was wired.  She felt better each day.  She was making up for eleven months of slogging through the muck of cancer.  She was two and wanted to play and play and play.  Each day brought more and more Donna back to us.  Skinny and pale with sunken eyes, Donna came back to us.  Stubble appeared, pink cheeks and lips returned, her eyes brightened.  Donna had never been more beautiful. 

Donna in linen dress

As we stumbled through these first official days after treatment, it took Mary Tyler Dad and I some time to get our bearings.  It felt like whiplash.  Just days earlier, we worried about two dots on the lungs, a second transplant, and Donna dying, but here in front of us was a bald headed spitfire.  She didn’t have time for our trauma.  Donna had things to do.  We tagged along.  Donna showed us the way.

While active treatment was over, there was still the daily insults of cancer.  Closets and tables full of medical supplies, lots of daily medicines to endure, weekly port access, and trips to the hospital for check-ups and occasional platelets.  When Donna’s home health nurse came, Donna would shyly cling to my legs.  She knew that Phyllis’ visits meant a needle poke.  As Donna gained health, her fight returned.  We had a routine that involved bringing Donna to her changing table, removing her top, which Donna hated.  I always imagined she felt so vulnerable with her port visible.  I would place my body weight over her legs to prevent kicking and hold her arms at her waist.  Donna, through her tears, would say, “One, two, three,” and that was Phyllis’ cue to poke.  It was a quick process, but we all hated it.  Moments after it was finished, Donna would sit up, get her shirt on, and be done with it, wanting to show Phyllis some new book or toy she had received.  I could not have been prouder of my girl.  Phyllis was amazed by her.  One day, after we saw Phyllis out — can you believe I was worried about manners at this time? — Donna shut the door and said, “You don’t like to do that, but you know you have to.”  She.  Was.  Amazing. 

I wrote at the time, “I am astounded by her brain and how it works and how it changes as it grows.  I am left in awe knowing how much trauma that same brain has been in over the past year and yet it still functions so beautifully.”  Donna, like any two year old, was working to become more independent.  She was playful, funny, clever, testing, silly.  She used to nap with a foam letter from her bath toys that she would gently place on the pillow next to her and cover with its own blanket.  The letter would change daily.  Life was so very sweet. 

One afternoon we had a clinic visit to check numbers and visit with our oncologist.  The nurses agreed to change Donna’s needle as it fell on a home health day.  As we walked into the tiny lab in the oncology clinic two of our nurses were prepping for Donna and in the background was Blue Oyster Cult’s “Don’t Fear the Reaper.”  With my straightest of straight faces, the indignant and morally superior one, I said to the nurses, “I can’t believe you are playing that song in a pediatric oncology clinic.”  Stare.  Our perfect nurse Tara said, not skipping a beat, “But it’s the cowbell version!”  We all bust out laughing and crying together.  Yes, life was sweet. 

Making pumpkin muffins with Donna

Tomorrow:  Family Portrait

 

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Donna’s Cancer Story: Transplant, Part II

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.

Donna hurting

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. 

skin burned from chemo

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. 

Rockstar Donna

Tomorrow:  Recovery