The Balance of Being a Caregiver and a Mother

Something a mother should never hear.

On October 18, 2000, my 15 year old daughter was diagnosed with cancer.

At that point in my life, I considered myself a veteran mom.  I’m not indicating that I thought I had all the answers, because I knew I didn’t.  Teenagers can drive that point home quickly.  But as the mother of four children (11, 13, 15, and 17), I had quite a bit of experience and didn’t get rattled easily.  I joked with friends that with four active children, we often “flew by the seat of our pants.”

Kara complained of feeling pressure in her left side one Sunday in October, so I scheduled a doctor’s appointment for the next morning.  I was a little irritated at Kara because, typical teenager, she didn’t want to get up.  When she did, there was no time for breakfast.  She told me, “It doesn’t hurt anymore.”  My response was, “I’ve made the appointment, we’re going.”

Our doctor examined Kara and sent us to the hospital for X-rays. The X-ray showed a mass the size of a football (11.5 inches), which had deflated most of her left lung.  The doctor immediately ordered a CT scan, so I called my husband, Dan, to let him know. While waiting for the scan, Kara had a low blood sugar attack. That only added to my unease. During the CT scan, I watched as a parade of medical staff entered one at a time, went into the control booth to look at the screen, then left.  I felt sick.

The doctor told us Kara had a bronchogenic cyst and referred us to a pediatric surgeon in Denver.  We met the surgeon and set the date for Kara’s surgery.  The surgeon told us that Kara didn’t have a cyst but a solid tumor.  Everyone still thought it was benign.  While I was worried about a major surgery, I thought we’d get through this and Kara would continue on with her sophomore year.

On the day of the surgery, an inexperienced nurse in pre-op bungled Kara’s IV insertion.  Next, Kara had a low blood sugar attack which caused a lot of excitement.  By then, she was feeling even more apprehensive about the surgery than ever.  I was in full protective mode and feeling apprehensive myself.  The surgery progressed smoothly and I joined Kara in recovery as soon as possible.  I stayed with her that night in PICU.  Kara made it clear she didn’t want me to leave; she was scared. By morning, Kara felt better.

Then our world rocked on its axis.  The surgeon told Dan that malignant spots were found in the tumor, so he called a pediatric oncologist. The oncologist and his nurse wanted to talk Dan and me privately.  It was not a conversation I wanted to hear. The oncologist told us that Kara had ganglioneuroblastoma and explained what it was.  We had never heard of it.  He also talked about next steps and suggested we visit their clinic that day.  They wanted us to feel comfortable and told us that it would start to seem like home.  My thought upon hearing that was, “I don’t want that place to feel like home.”  I knew they were trying to reassure us but I felt very pushed to embrace this new world.  I was still trying to wrap my mind around the news that my daughter had cancer. I needed time to process the information, but I knew it was real.

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The nurse came with us to tell Kara, who didn’t say much in response.  Dan and I made the decision to wait until one of us could return home to break the news to our other children.  Dan went home first, so he told them but they didn’t say much.  After Dan came back, I went home for a night and had a good long cry in the shower.  It became my “crying place.”

During the next few days, Kara went through a series of tests to determine if the cancer had spread.  We breathed a sigh of relief when the results were negative.  I asked the pediatric oncologist why Kara had to undergo chemotherapy if no cancer was present.  He explained that no test could detect tiny amounts of cancer and neuroblastoma was very aggressive.  The oncologist wanted to start treatment immediately, but we after talking with Kara, we insisted that she be allowed to go home for a few days.  We all needed some normalcy before starting on that arduous journey.

Kara went through six rounds of chemotherapy over seven months.  I quickly learned the role of a cancer kid mom.  The chemo made Kara so sick that she couldn’t attend school and my attendance at work was hit and miss.  Fortunately, my employer was very understanding.  I learned that five to seven days after every chemo round, Kara’s counts would drop and she’d spike a fever, meeting the criteria to be hospitalized.  Since that meant a trip to Denver, I kept a bag packed with essentials and a change of clothing.  I learned to take it with us every time we went to Denver because Kara could be hospitalized at any time.  And, I realized that by the third round of treatment, the clinic did indeed feel comfortable and safe (much like home).  I also learned to put plans in place for my children who were left at home, so they could live somewhat normal lives while Kara and I were in the hospital and Dan went back and forth.

However, I wasn’t just worried about Kara; I was very concerned about the impact her cancer would have on our other children.  I talked with their teachers, asking that they be vigilant and let me know if they noticed any problems.  Friends were wonderful about helping us out.  My oldest son stayed at home. My 13 year old daughter and her 11 year old brother stayed with friends.  Later on, my thirteen year old chose to stay at home with her older brother.

Our other children wanted us to let them know right away when we headed to the hospital. So we honored that by putting a system in place with each school for the best way to notify that child.  We got a credit card for our oldest son and made sure he also had money available to buy groceries or gas.  I quickly signed any permission forms and wrote checks for any college application fees when a trip to Denver was imminent.   I helped my son fill out his senior announcement order form over the telephone while he was home and I was at the hospital with Kara.

I remember all the times we took Kara to the hospital. She cried when her hair started falling out and so did I.  Then she started laughing and joking about it, but inside, I hurt.  Just before Christmas, the chemotherapy caused kidney damage.  Kara was so weak that she couldn’t dress herself.  I never thought I would have to dress my teenage daughter.  Several times, I had to lift a glass of water to her mouth and help her drink because she didn’t have the energy to do it herself.  We have few pictures of that Christmas, because Kara was so ill.  Her doctors were hopeful the damage was temporary.  But as I considered Kara’s future, I realized I needed to have a discussion with her.  One of the hardest conversations I’ve ever had.  I asked Kara what she considered quality of life to be.  I felt I had to ask her opinion and then I had to be her advocate. We both cried during that conversation.  Luckily the damage was temporary.

As a mother, I felt torn between the hospital and home. My thirteen year old was very adamant that Dan and I attend an orchestra performance. We’d missed other performances because Kara was in the hospital.  So we drove home, went to the performance, spent some time with our other children, and drove back to the hospital.  Kara was not happy that we’d been gone so long and shared her displeasure.

As treatment continued, Kara spent more time in the hospital.  I felt we were straddling a fence and could fall off at any time.  It was a relief when a second surgery was scheduled to clarify ambiguous scans.  Kara’s surgeon took several biopsies, as he wanted definitive information. They were all benign.  On May 18, 2001, Kara completed her off-therapy scans.

That fall she joined her class as a junior and graduated with them in 2003.  I cried at her graduation.  Not for the reason that most mothers cry.  I cried because I remembered those times in the hospital when I was too scared to look ahead.  I didn’t cry because Kara was moving to Washington, D.C.  I cried because I knew she wanted to attend Georgetown University and her dream was coming true.

I will always be concerned about Kara’s health.  She has had some health challenges.  But I realize that the most important lesson of survival is that Kara live her life, taking advantage of every opportunity to live it in the fullest manner.  Yes, I am cognizant that there could be late effects on the horizon and that scares me.  But I do not want my daughter to live in fear and I can’t either.