Tag: childhood cancer

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Donna’s Cancer Story: Blessed Routine

This is the fifth 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. 

When you are caring for a child with cancer, you take nothing for granted.  Nothing.  Now that Donna’s chemo had proven effective, we knew what we would be doing for the next few months.  We knew when the chemo would be scheduled.  We knew that 10-11 days after the chemo drips finished, Donna would reach her nadir — the point in her chemo cycle where she had no counts (meaning, an absence of white blood cells), required blood and platelet transfusions, and was at her most vulnerable for infection. 

We knew on that day Donna would develop a fever.  It would start low, 99-100, but we knew just where it was going and would reach its destination in a few hours.  We were not allowed to administer Tylenol to take down the fever.  At said destination, 101.5, we would call the hospital and be instructed to head to the ER.  They would take Donna’s temperature and immediately administer Tylenol to take down the fever.  We knew that we would spend several hours in the ER before Donna would be admitted to the oncology unit.  Believe it when I say this was a blessing.  After four months of uncertainty, bad news, terror, and sucker punches, this month of treatment was a welcome friend.  We had achieved routine, the holy grail of pediatric cancer treatment. 

It sounds impossible, but it’s true.  Mary Tyler Dad took comfort in the writings of Primo Levi during this period.  Levi was a Holocaust survivor of Auschwitz and lived to write beautiful novels and stories, all influenced by his time there.  He wrote of survival and the surprise of living under the worst of conditions.  We could relate. 

Flower shopping at Evanston Farmer's Market

Donna was more than holding her own in these weeks.  Because we now had predictability, we could venture into the world of making plans again, albeit on a limited basis.  Playdates could be scheduled during the healthy week of the month between recovery from neutropenia and returning to the hospital for the next round of chemo.  We learned to take advantage of that week fully and completely.  When Donna’s counts returned to normal we celebrated with macaroni and cheese at Noodles and Co.  When her port could be deaccessed, she delighted in baths that didn’t involve saran wrap.   

Donna’s port is important to understand.  Indulge me while I explain.  In order for chemo and other drugs to be administered more easily, a device, or “port,” is placed under the skin in the chest.  It’s about the diameter of a quarter and several times its width.  Think of a stack of three or four quarters being embedded, flat, under your skin, just to the outside of your left nipple.  When chemo is being administered, the port is “accessed” with a needle inserted in the port and linked to fluids.  Donna used her port for chemo, but also for overnight fluids that were required to fend off dehydration.  These fluids were managed by me and Mary Tyler Dad at home.  We learned to wake and change Donna’s diapers twice each night, at midnight and 4am, to prevent her diaper overflowing from all the fluids.  Graciously, Mary Tyler Dad handled those early morning changes as payback for the year of nursing I did when Donna was a newborn. 

When chemo or fluids are not being administered, but there is a frequent need to take blood for testing, the port remains accessed, leaving a 4″ – 6″ tube dangling.  It is easily hidden under clothing.  Donna came to call this tubing her “tubie.”  She had a hate-hate relationship with her port, but pretty much loved her tubie.  It was her near constant companion.  The needle sticks were frequent for chemo and blood draws and those were universally traumatic, but they were made easier because of the port.  The port negated the need to find a vein and poking it was pretty easy.  We even did it ourselves a couple of times in emergencies. 

The few days a month post neutropenia and pre- next round of chemo, Donna was allowed to have the port access removed.  We would cheer, “No more tubie!”  Now you understand how bath time was made easier sans tubie — no saran wrap needed to protect the port from water.  (Our official Cancer Parent endorsement is Glad Press ‘N Seal — works wonders for the cancer kid!)  Also, when the tubie was removed, the skin at the port site was now exposed and visible from underneath the tape that usually covered it.  Inevitably, it was bruised and purple.  Donna called it her third “nickel.”  She was clever like that. 

You see, there is a grind to chemotherapy, and we were in the thick of it.  And yet somehow, it felt like a respite.  We were grateful the chemo seemed to be working, as we had another positive scan result this month.  We were grateful to have enormous support from family that took turns caring for us so we could care for Donna.  We were grateful for the one week a month of health for Donna.  We felt blessed. 

Donna lounging at park in healthy week of month.

Tomorrow:  Vacation

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Donna’s Cancer Story: Chemo Starts

This is the fourth 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 cancer treatment. 

It’s hard to believe, but yesterday’s entry only covered two weeks of the third month of treatment.  There was simply too much happening to document it all, which is a bit like this month, too.  Donna’s cancer, to use an analogy, was very much like the stock market.  The ups and downs are exhausting.  The best strategy is simply to focus on what is happening right in the moment you are in and deal with the future as it comes.  If it comes.   

Chemo was hard on Donna.  I mean, she was a tiny girl, under 25 pounds.  The regimen that was selected was known as “ICE.”  It required five inpatient hospital days to administer, including time for pre-hydration and post-hydration to help flush the toxins out of her system.  An oncologist acquaintance referred to it as the “sledgehammer” of chemo cocktails. 

The first month was terrifying for us.  We did what we needed to do and were grateful for the opportunity; grateful for the ability to inject poison into our girl’s thin, tiny veins, if that is what it took to rid her of cancer.   Triple sigh.  At our first discharge we got a home health order.  A nurse would be coming and supplies would be sent so that we could manage Donna’s IV and medicine needs in the comfort of home.  That adds stress to an already stressful situation, but you buck up and do what needs doing.  That is the life of a Cancer Parent.

With the first round of chemo there was vomiting, loss of appetite, lethargy, and the thinning of the hair.  Donna’s beautiful curls were going away.  It’s such a vain thing, but ask any Cancer Mom and she will tell you – – this hurts like hell.  Donna slogged through it, finding comfort in our arms and the distraction of tee vee and youtube.  Our parenting standards went away with Donna’s hair.  If potato chips, tee vee and staying up late brought her comfort, so be it, we would work through the consequences later.

Donna in purple pajamas

We returned home, grappled with the King of Sucky Home Health Agencies, and did the best we could to comfort Donna and tend to her needs.  This was heartbreakingly difficult as there was a battle going on within her body between chemo and her cells, both healthy and unhealthy, that brings almost constant discomfort to cancer patients.  Nothing was good enough.  Food, books, videos, tee vee shows.  All were met with the plaintive wail of Donna yelling, “SOMETHING ELSE!” 

But we got through it.  Amidst the discomfort Donna developed neutropenia, the phase of treatment where your immune system collapses, making you vulnerable to opportunistic bugs.  Infections can kill.  We went back into the hospital after a long and tedious ER stay and were brought to our room on the oncology unit.  I immediately walked to the nurses desk and said, “I think there’s been a mistake.  Donna is neutropenic and needs an isolation room.”  God bless her, the nurse patiently educated me that most of the kids on the floor were neutropenic.  If she rolled her eyes, it was only after I walked away.  The single room we enjoyed during the chemo infusion was simply good luck. 

Miraculously, Donna recovered over a couple of days and returned to good health.  No infection developed, but she received days of IV antibiotics until our docs were satisfied of that.  We went home to pack.  That’s right, pack.  Thinking there was not enough going on in our lives, we had bought a new home.  What the what?  Yep, just days before Donna’s diagnosis we had put a bid on a new place not a mile from our old place.  We were given the opportunity to back out when the developer learned of Donna’s cancer, but we opted to move forward.  It seemed a hopeful choice to us and one Donna fully endorsed. 

Donna eating a snack in her blue jacket

I just shake my when when I remember the insanity of this month.  A few bags were packed to stay at a friend’s home while they vacationed.  A boat load of believers had a packing party for us and knocked it out over a day and a half.  Movers came and when we returned to our home, it was a new home, just half a block away from Donna’s favorite park.  We had been unpacked by another crew of volunteers.  Donna loved it, we all did.  I would spend the next several months finding things others had unpacked for me, never forgetting how amazing human beings can be.  Aside from the cancer, who hasn’t fantasized about someone else packing, moving, and unpacking you?  That was one of the gifts cancer brought us.

The plan for Donna was to be rescanned a few weeks after the first chemo to determine if it was having the effect that was hoped for.  Again, no roadmap, just hopes.  The docs were pleased with her recovery – – this was hard to imagine as we saw our girl shrinking and sad and thinning.  They saw a girl who had no infection and a quickly recovered immune system.  Recovery is in the eyes of the beholder.  Our oncologist suggested pushing up the scan dates to capitalize on Donna’s health.  Gulp.   

The MRI was performed at 6:30 on July 3rd.  We got home about 11:30 that night, Donna wired and hungry from not eating since early that morning.  The next day was quite possibly the longest day of my life.  Donna played, Mary Tyler Dad kept her company, and I nursed my anxieties with television, chocolate, soda, and pajamas.  Happy 4th of July, folks!  On the fifth, unable to stand it a single second longer, I called our RN.  The CT looked good, but the final read on MRI was not complete.  Given our history with hearing too early interpretations of scan results, they were extra careful.  A couple of hours later we got the call:  Donna’s lung lesions were significantly diminished.  There was a clean spine and the residual brain tumor had remained stable.  RELIEF.  The chemo was working.  Suddenly, we did have a roadmap.  More of the same, possibly 4-6 more months.  Bring it.  We were on top of the world.  Donna was strong and if she could handle it, so could we.

In the midst of this chaos, our friends had organized a benefit in our honor.  They were worried for us about medical expenses and insurance and wanted to do what they could.  This was so very humbling, to be on the receiving end of such generosity, and I fear to this day I will never be able to repay what people did for us in Donna’s name.  

A few days after that, Donna turned two.  We celebrated with a platelet transfusion.  Unexpected as it was — we got the call at 2pm — the need was urgent and could not be postponed.  Donna was okay with that.  For her, it was a hospital day with two parents instead of one.  And the docs and nurses gifted her beautifully wrapped presents and sang the happy birthday song.  Our girl was two!

Sign at the Candlelite:

Tomorrow:  Blessed Routine

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Donna’s Cancer Story: Surgery 2.0

This is the third 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.

Full disclosure here, I feel guilty about what you readers are experiencing with this effort of mine.  I’m a clinical social worker and know full well of a phenomenon called ‘vicarious traumatization,’ which happens when a trauma specialist spends day after day being exposed to another’s trauma.  Mea culpa, my bad.  But here you are, and here I am, so let’s get to it:

Donna looking up with big blue eyes

Whiplash is what comes to mind in this third month of Donna’s treatment.  The month started with a plan to temporarily relocate to Texas for proton beam radiation treatment at MD Anderson.    Yes, Houston, we have a problem.  Three days before our departure, Donna had an MRI at Children’s to establish a baseline for her treatment.  Before even leaving the hospital, our neurosurgeon called us to report that the “nub” of a brain tumor detected just 21 days earlier had experienced “explosive growth.” 

What unfolded in the next days is something I would not wish on any living soul.  Plans were quickly scrambled and a surgery was scheduled.  Just ten weeks after her first resection, Donna’s brain would be cut open in the exact same location.  This surgery took longer, though the recovery was much quicker.  Donna, the bull that she was, sailed through.  Her oncologist once referred to her as a “sweet princess” and I felt the need to correct him.  Donna was never a princess, she was more of a tough cookie.  Always had been.

On the heels of the surgery, while Donna was recovering in the neuro unit, the oncologist came by late in the afternoon a day or two later to toss out the suggestion that he would like to have a full body scan to rule out any migration of the cancer.  This sounded ominous to me.  Nothing like this had ever been mentioned or suggested before.  A pit embedded itself in my stomach and did not leave.  This photo was taken just minutes after that discussion.  Donna was in heaven and we were in hell.

Donna in the hospital

The CT scan revealed our worst fear:  Donna’s cancer had metastasized to her lungs.  I wanted to vomit, instead I started to gasp for breath and wailed repeated apologies to Mary Tyler Dad, “I’m so sorry, I’m so sorry, I’m so sorry,” over and over and over.  I felt guilty for something I had no control over.  I felt heartbroken that this was happening to my husband and daughter.  They did not deserve this. 

We were gently and compassionately advised by Donna’s oncologist that it would be perfectly reasonable to not treat the cancer and let Donna enjoy the time she had left to the best of her ability.  A prognosis of 2-3 months was given.  Alternately, we could pursue chemotherapy with no roadmap or certainty that it would help.  Papillary meningioma has a poor track record if not cut out.  It tends to migrate and be non-responsive to adjuvant therapies like chemo and radiation, but the sample numbers were miniscule (as the diagnosis is so rare.) We were offered the shot.  They discharged us with the assignment to think it over. 

And this is where the whiplash comes in.  How does one carry their child home from the hospital with no treatment plan and a prognosis of 2-3 months and “think it over.”  And Donna, bless her beautiful, innocent soul, had not a care in the world.  She was happy, felt great, was recovering nicely from her second craniotomy.  She just wanted to play and laugh and dance and read and giggle and be her own joyful self.  Here is a passage I wrote in our caringbridge journal from this month:

“There is a tenseness that does not go away, ever.  It is in our sleep, our wake, our breathing.  It is too difficult to imagine what we could lose and so we only deal with it in these incredibly potent, concentrated bursts of terror, doom, fear, and dread.  And then we have a tea party with Donna.” 

There were many tea parties with Donna this month, despite our dire circumstances.  Park visits, zoo visits, play dates.  It was spring, and trees and gardens were waking up.  Donna, you see, was still just 22 months old.  She knew what she knew and wanted what she wanted.  We did everything in our power to protect and preserve her childhood.  We needed her innocence just as she needed our protection.  Mary Tyler Dad said it best, “She is an opiate for pessimism and despair.” 

The family relaxes in the eye of the storm.

We took our cue from Donna, just as we had been advised to do by our wise and gifted nurse coordinator.  Donna was life.  She was so vibrant and vital and alive, that in the end, our choice to pursue chemo was made by her.  These days, the docs no longer tell you what to do, at least in our case where there was no track record of whether or not any of our options would work.  The choice was ours.  A game designer and social worker left to fend for themselves in this new terrain of medicine where the stakes were impossibly high.  Sigh.

Before chemo could begin, Donna’s disease needed to be “staged.”  Lord, how I hated that word.  Staging is a series of tests performed over a number of days to determine if and where the cancer has spread.  The anxiety will bring you to your knees.  Bar none, waiting for test results is in my Top 5 Worst Things About Being a Cancer Parent. 

Our timeline was so compressed that the docs admitted Donna to oncology before we had any results.  Chemo was ordered and administered literally moments after our oncologist gave us the good news that Donna’s bones had been spared.  Poor guy was tackled by me with hugs and wails of relief.  When the toxic chemo started to drip in Donna’s veins, she was sleeping.  I was huddled in a corner wrapped in a prayer blanket that had been gifted to me that morning.  There was a hush in the room  and the nurses silently completed their task.  The space felt sacred. 

Tomorrow:  Chemo