Tag: Children’s Memorial Hospital

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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: Transplant, Part I

This is the ninth 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’ve never run a marathon, but I have seen a daughter through a stem cell transplant.  So there’s that.  After the decision was made to transplant Donna’s own stem cells back into her body after a mega-dose of chemo, we tried to prepare for the unknown.  That’s a hard thing to do.  We met with the docs, we asked to be connected with another family that had been through the same with a young child.  We tried to focus on the 85-95% of children that survive their stem cell transplants. 

A week or so before the scheduled date of admission to Children’s Memorial to begin the chemo, we had a sit down with the stem cell doc assigned to Donna.  While we waited in the meeting room, we couldn’t help but notice the Xeroxed flyer for a little girl’s memorial service tacked to the bulletin board behind us.  It was purple. 

The doc was very informative, though cool.  His manner was very different from our oncologist we had grown to love and rely on.  He talked stats and numbers and had a list of risks and side effects.  He calmly told us that the treatment would make Donna infertile.  That she would require hormone replacement therapy (HRT) starting in adolescence to develop along with her peers.  Puberty would not come naturally.  Donna would also require growth stimulants as the toxins would stunt her natural development.  Our girl who had always been petite and delicate would remain so.  She went into her transplant at 28 months and 24 pounds. 

This doc was tough, all business, minimal eye contact.  That kind of bedside manner is hard to take when you’re a parent, but you have to respect what this man does for a living.  One in ten of his patients die and they are all children.  It took a while, but in the end, Donna melted him.  He began to gift her books and she returned the favor with drawings or paintings.  Relationships are everything, even in cancer. 

We wouldn’t be admitted until late in a December evening, so on Donna’s last day at home we worked to create some holiday cheer for the girl.  In the morning we visited the Christmas trees at the Museum of Science and Industry.  We came home for a final nap in her own crib, woke up for dinner and got the call about 6pm that Donna’s room was ready.  It was snowing and beautiful.  A heavy, gentle snow.  We drove slowly along residential streets to look at the holiday lights.  There was no rush to get to the hospital we would call home for the next month.  Donna was happy.  We were anxious.

One of the many things that made us anxious was finances and medical expenses.  Our insurance company had denied Donna’s stem cell treatment as “experimental.”  The financial director at the hospital remarked that the denial letter was one of the “tightest” she had ever seen.  We consulted an attorney, but had no energy for that kind of fight.  With help from the financial office, we applied for Public Aid.  Say what you will about Governor Blagojevich, and there is a lot to say, but he had championed legislation in Illinois called All Kids that made it a legal requirement for all children to be covered under insurance.  That meant that because a for-profit insurance company had denied Donna’s medically recommended treatment, the State of Illinois assumed the financial burden for her stem cell transplant.  To the tune of $600,000.00.  From the bottom of our weary hearts, THANK YOU, taxpayers of Illinois.  Were Donna to be diagnosed today, this option would no longer be available to us, as families that fall above a certain income level are now disqualified; that $600,000.00 expense would fall to us.   

Over the next seven days, Donna received more chemo than seemed humanly possible.  The poison had names like etoposide, VP-16, thiotepa.  Thiotepa is an especially melodic string of syllables, isn’t it?  Thiotepa is a bitch.  While it is being administered over a series of four days, the strength of its toxins are so potent that Donna was required to take four baths a day.  At 8am, 2pm, 8pm, and at a ghastly 2am, Donna was carried to the tub to rinse and clease the residue that was excreted from her skin. 

 
stem cell transplant bath<
 

On Donna’s chest is her port, with the beloved tubie flung over her shoulder.  The arm has the PICC line that was installed specifically for the transplant, allowing another means into and out of Donna’s body.  Toxins in, blood out.  The blood is how progress is measured (through the presence or absence of white blood cells) and infections are identified.  Soon after this photo was taken, an NG tube would be placed.  Sixteen inches of tubing running from her nose, down the esophagus, directly into the stomach.  This was how nutrition was maintained during the transplant.  So many tubes . . .

After chemo was administered and a day of “rest,” Donna was moved to an isolation room.  This is where we would spend the remainder of Donna’s stem cell transplant.  The room is small, but private, so that is a bonus.  The photo below is a good shot of Donna’s small room, which had its own ventilation system and a small adjoining ante room, where visitors needed to scrub and gown every time they entered or exited.  When one child leaves and before another arrives for their transplant, the rooms are scrubbed floor to ceiling and the furniture is scrubbed with toothbrushes.  One errant, industrious germ is enough to kill a kid that lacks an immune system.  There are eight of these rooms at Children’s Memorial and they are almost always full. 

Donna’s room was decorated with “bubbles” from friends and family that had been requested on her caringbridge page.  Before we moved in, the Child Life staff had asked what licensed characters Donna liked.  The staff would then decorate the room before we arrived to make a cheerful home for Donna while she healed.  The thought of dozens of Doras or Caillous staring back at me for weeks was too much to handle, so I asked readers and supporters to send along their well wishes in a “bubble” to decorate the room.  They were beautiful and kept us company during some dark days.  Those bubbles now decorate the walls of our playroom.

IStem cell room

If you look closely, you’ll also see two pictures of Wonder Woman on Donna’s bed.  They were given to us by friends and were taped to Donna’s bed at each admission.  A reminder to all that Donna was a superhero, powerful, and not to be underestimated.  As I was packing for the transplant stay, I pulled out the Wonder Woman cards and Donna grabbed the one at her head where Wonder Woman is holding open the jaws of a dinosaur.  Donna looked at it and said, “She’s going to fight that beast away, but right now it’s scary.”  Amen, Donna.    

Tomorrow:  Transplant, Part II

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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