Tag: childhood cancer

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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

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Donna’s Cancer Story: Harvest

This is the eighth 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.

I'm sorry, Donna

Autumn is the harvest season, and it’s no different when you live in Cancerville.  The docs had recommended a stem cell harvest for Donna to extract then freeze her healthy stem cells to be used for a transplant or “insurance,” whatever that meant.  I shudder when I look back at our journal and realize just how naive we were, how little we knew.  Thank goodness for that.  I always say, ‘enjoy your naivete, cause when it’s gone, it’s gone.’  Like your virginity or a plate of fried chicken on the 4th of July. 

Looking at these photographs of Donna is very hard for me.  My first thought upon seeing them was, “Oh my God, my daughter has cancer.”  Mind you, this was eight months into diagnosis.  Despite hair loss and vomiting and sunken eyes, much of the time Donna was able to raise our spirits and awareness to a place beyond cancer.  Seeing these photos there was no denying that Donna was in great peril and so, so vulnerable.  The opposite of a vampire, Cancer Donna was only visible in print.  In person, Donna was just Donna, the girl we loved. 

Stem cell harvest is an arduous process that involved the insertion of a central line in Donna’s jugular vein placed under anesthetia.  Donna’s blood was removed, the desired stem cells extracted from her blood, then the blood returned to her body.  The machine that the blood is filtered through is called an apheresis machine and it looks like a retro computer from the 1960s, with lots of knobs, dials, and lights.  A threshold number of extracted stem cells are required for it to be considered successful and Donna’s weary body was tired; the chemo had killed healthy cells off just as it had the cancer cells.  As a result, Donna had five eight hour days on this Godforsaken contraption, two last month and three this month. 

All the wires
At the end of the fifth day, we were approached by the stem cell team who wanted to talk and complete paperwork.  What the what?  As far as we knew, our oncologist was leaning towards a watch and wait approach.  Proton beam radiation was still on the table.  And yet here were a team of folks telling us otherwise, that Donna would require a tandem stem cell transplant with a 5-15% mortality rate.  This was a team of folks we had just met moments earlier, a team of folks who knew more about the plan for our daughter’s care than we did.  I was angry.  That night I wrote:

“If a transplant/rescue is what is decided is best for Donna, we will do that.  We will carry her through, just as she will carry us through.  All we ask is to be part of the decision process — not the after thought the stem cell team kind of insists on making us.  The stem cell doc tried to reassure us today by calling us the “quarterback” of the team.  If he knew me, he would know that you don’t use a freaking sports analogy when talking about Donna’s health, and that if we were the quarterback, we would call an audible and go home and forget any of this ever happened.”

We were overwhelmed.  As I write these posts, there is a disbelief that Donna went through any of this at all.  There is a disbelief that we went through this with her.  How?  On?  Earth?  I don’t know, except you do what you need to do in the moment.  Just like Donna. 

Several days later, we met with our oncologist who confirmed our fears.  Yes, the team had shifted gears and was now recommending a tandem stem cell transplant.  But, honestly, what did we think Donna was hooked up to that contraption for?  A transplant would involve hard core chemo.  The stem cells are harvested in a time of health to be reinjected or “transplanted” back into the body to “rescue” the immune system, and, in effect, the patient, from death.  Without healthy stem cells, the strength of the chemo is so toxic and potent that it would kill.  Even with the stem cells, there was the anvil of the 5-15% mortality rate.  And which was it?  One person told us it was nearer to 15 than 10 and another told us, “Nah, it’s more like 5-10%.”  Nah?  Just like that.  Nah?  Yeah, cause that’s how stem cell docs roll. 

In the photos, you see how uncomfortable Donna was.  She favored or protected the right side of her neck the entire time that tube was in.  And this was a TUBE — no cutesy “tubie” was this monster.  I had to leave the room to breathe when the nurse pulled it out at the end of the process.  When I saw it lying there on the hospital bed I gasped a little.  My darling, my Donna.  What were we doing to her?  And at the end of three days of harvest, Donna’s reward was another dose of VAdriaC. 

The TUBE<

 After a visit to the oncology playroom during this hospital stay, I wrote:

“This admission was a lesson on the continuum of cancer.  For the first time in memory, Donna was the sickest kid in the room.  It’s hard to be the parent of a child with cancer, but it’s harder to be the parent of the sickest kid in the room.  It feels so defeating and hope dashing.  It brings out the worst in me.  You actually start to envy kids with different cancers.  That’s just wrong.”

You know your kid is sick when you’re jealous of another kid’s cancer.   

But like the stock market I referenced a few months ago, there are ups and downs to cancer.  The VAdriaC was simply less potent and Donna recovered more quickly from it’s grasp.  The color on her cheeks reappeared this month for the first time since June.  That’s five months ago for those keeping score at home.  Halloween (Little Red Riding Hood) and Thanksgiving (where you see Donna below) were spent in health and Donna enjoyed them both.  Donna’s chemo cycles were over.  She had not only survived them, but thrived.  Though there were sixteen hospitalizations since we moved to Cancerville, there wasn’t a single infection under chemo and Donna recovered amazingly well, the docs assured us.  Take that, bastard cancer.  Donna was a rock star. 

Donna on Thanksgiving

Tomorrow:  Stem Cell Transplant

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Donna’s Cancer Story: Vacation

This is the sixth 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.

Remember that blessed routine I waxed poetic about just yesterday?  Yeah, things felt a little less blessed this month.  Not catastrophic, mind you, just hard and wearing and sad.  After a few rounds of chemo under Donna’s belt, I was aching to get away during one of her healthy weeks.  We had good friends with a beautiful loft in Michigan, just a short walk from the beach, who offered their home for us to rest.  It was a Godsend.  I counted down the days of Donna’s cycle, knowing that soon we would be capitalizing on her week of health in Harbor Country.  All things seemed possible and life was looking up.  Until Mary Tyler Dad got sick.  The night before our departure.

After an evening of overindulgence (cheese, not alcohol), Mary Tyler Dad didn’t feel so well.  He was sick as a dog and I was mad as a hen.  Seriously, it was not my finest marital moment.  There he was, tossing his blue cheese burger, repeatedly, and I was pacing and incensed.  How could he?, I remember thinking.  My picture perfect family getaway where we were going to ignore cancer for five whole days was being usurped not by chemo or neutropenia or cancer, but by blue cheese!  It was one of the few fights we had about Donna’s cancer.  I’m still not proud of myself.

Cheese aside, we made it, though delayed a day or so.  It was everything we hoped for.  Donna loved the space and made herself right at home.  She didn’t like the beach so much, or the wind, or the water, but, you know, it was a suspension of our reality, so we were all buzzed with just being away. 

Donna at Lake Michigan

Kisses in Three Oaks, Michigan

We came home to more of the same.  The grind of chemo started weighing more heavily on our girl.  Her hair thinned, her eyes grew sunken.  As her appetite came and went, her weight just went.  For the three weeks not spent in health, her favorite place to be was in my arms.  So that’s where she spent most of her days.  She would say, “Mama, let’s rock and roll,” which was how she asked to be held in the rocking chair in her bedroom.  We also called it, “loving,” as in, “Donna, do you need some loving?” 

We spent hours together at home, with Mary Tyler Dad at the office, just Donna and me, rocking and rolling.  The downstairs sofa bears permanent imprints of my cheeks.  Donna watched hours of Caillou on the good days, impassively, she on my lap, a blanket over both of us.  On the bad days, the days a week or so post chemo when her body was grappling with the loss of its immune system and the medicine we injected each night into her port to stimulate her bone marrow, GCSF, caused significant bone and joint pain, we were more likely upstairs on the kitchen floor.  To this day I don’t understand it, but that is where Donna wanted to be held.  Sometimes I would sit on the floor and she would rest her head in my lap.  I wrote at the time, “She wants to be in our arms in her misery.”  It was so very sad to not be able to make the pain go away.  The most I could do was keep her company there, in her misery, and assure her she was not alone.

Eating and drinking would be measured in bites and sips for days and then, like a switch had been turned, Donna would devour amazing quantities of food.  Plates of tortellini and gallons of milk.  She would be voracious.  And then, flip, the switch turned again and we were back to bites and sips.  And as Donna’s mood went, so did ours.  On the good days the sun shone brighter, the grass was greener, the flowers never lovelier.  On the bad days, well . . .

Seeing Donna suffer and physically diminish lead to some pretty dark thoughts, too.  We both tried, Mary Tyler Dad and I, to, if not make sense of what was happening, at least try and make peace with the possibilities of what could happen.  We worried about the chemo not working at some point.  Or we worried about what came after the chemo.  Those thoughts were there always, especially after Donna went to bed at night.  One night I wrote in our caringbridge journal, “Even if Donna’s life is abbreviated, she has woken up each and every morning to love and comfort and arms wanting to hold her and lips wanting to kiss her.  Not all of us are that lucky in this world.”  And those words were true, but still, the thought of her death was unbearable, but close. 

In this photo, Donna is wearing her robot pajamas.  She loved them so.  I put Mary Tyler Son to bed tonight wearing them.  He loves them, too.  They brightened her night to put them on.  When I bought them, I cried.  When you have a child with cancer, you never know how to plan ahead.  I always bought Donna’s clothes off season.  At the end of winter, I would stock up for things she would wear the following winter.  That stopped cold when the cancer was diagnosed.  Anyway.  When paying for the robot pajamas at the Old Navy I had an especially chatty cashier.  He was pushing sales, too, and kept encouraging me to buy more than the two pair I had put on the counter.  I politely told him two was enough.  “But they’re on sale,” he said, helpfully, “Get the next size up!”  Cue tears here.  I couldn’t stop crying when he said that.  The poor guy didn’t know what to do with me.    

Donna in robot pajamas

Tomorrow:  Questions