September is Childhood Cancer Awareness Month: The Rest of the Story

Caitlin had been diagnosed with a malignant brain tumor. Cancer. Chemotherapy was offered to us as the best treatment, and we were told her protocol would consist of three different kinds of chemo. Two of the drugs would be administered at home, the other at the hospital. With these particular drugs, Caitlin’s diet would also be affected; she wouldn’t be able to eat bananas, chocolate, processed meat, and a few other things that are common in most children’s diets.

I can’t remember the order of things that happened next, however she needed to have a central line placed to receive her chemo. She’d had a BROVIAC in the hospital, but we decided to go with a PICC line this time around. The PICC line would be replaced halfway through her treatment with a PassPort.

There are two things that happened that are pretty vivid in my memory of this time. The first was coming home from the hospital and having several large boxes delivered. I opened them to find they were filled with medical supplies. It felt completely overwhelming and made everything so real.

I also remember that one of Caitlin’s drugs was not available in the dosage she needed, so the pharmacy replaced the amount with nine pills. It was at that time it occurred to Clint and me that Caitlin had never learned to swallow pills. She was barely four years old. Clint called oncology and was told he could crush them into a powder, but he wasn’t to breathe in any of the residual powder or get it on himself, and then we’d need to thoroughly clean the area. They were referring to something we were going to put in our child. Hard realities.

With Caitlin’s PICC line, it was necessary for her to have a home health care nurse. Our nurse would come once a week and turn our dining room into a miniature clinic. Her visits were just one part of our new routine, something that had to be done. In those first weeks I kind of resented her visits; it was just a reminder of the reality of what we had to do and it brought our two worlds, home and hospital together in a way I wasn’t comfortable with yet.

Then something changed. I don’t know when or how it happened, but our nurse became our dear friend. At the time, I didn’t have any “cancer mom friends.” It wasn’t until Caitlin had completed chemo that I was blessed (and I truly mean blessed) with a wonderful group of women who understood what it was like to have your life turned upside down in this way.

As I warmed up to our nurse, I learned that she had just completed treatment for breast cancer. I believe this gave her a whole new understanding beyond her medical training of how cancer felt on the other side of the stethoscope, how it affected the patient, and those who loved them. She was so loving and caring towards Caitlin and treated her in the gentlest way. I loved her for this.

During this time of treatment we were having a hard time answering the questions of strangers. First they would ask what had happened to Caitlin’s arm (her arm was wrapped to hold the PICC line next to her arm and prevent germs). If we responded with cancer, it would often lead to other questions that resulted in awkward conversations. I remember one such conversation at Caleb’s karate studio when a woman asked me right over the top of Caitlin’s head if she was expected to live very long. {Whew!)

Trusting our nurse, I asked her how she had handled these questions. She took Caitlin’s cheeks in her hands and looked her right in the eyes and told her that if someone asked her a question that she didn’t want to answer, she should tell them it was none of their business, then she had Caitlin practice saying this sentence over and over again (with attitude I might add). The look of empowerment in Caitlin’s eyes was amazing and she thought this was the funniest thing ever. Our nurse had given her permission to stand up for herself and take back her right to privacy.

I have to admit I thought that day would be the end of our public outings for a good long while, but it wasn’t. Caitlin never said those words to anyone, but she knew she could have and that was enough. It also did something for me. I knew I didn’t have to answer either. This was our fight and the details weren’t important to anyone except those who genuinely loved and cared about this child.

Chemotherapy surprised us. While we were at my parent’s house for Thanksgiving that first year I noticed something all over the carpet when I went downstairs. As I got closer, I realized it was clumps of Caitlin’s curly blond hair. It hurt my heart to see this and as I was alone, I quickly cleaned it up before anyone else noticed. I fully expected she’d lose the rest of her hair within a few days.

For the most part, we looked forward to going to clinic for chemo. It was our safe place where people understood and were there to help us. The woman who took blood pressure, temperature, height, and weight just loved Caitlin and was so sweet to her. She’s still there all these years later and is always so happy to see her and how much she’s grown when we go in each year.

The days were long, but Caitlin usually felt well enough to make an art project, have a snack, and play video games in our little room while each member of our medical team would come in to ask their questions, perform their examinations, poke and prod. She was only four, but somehow she put up with all this and remained patient. The only thing she didn’t like was actually getting the chemo; she said she could taste it when it was administered through her PICC line. On our way out of the hospital, she’d always want to buy a treat from the vending machine, or if it was still open, go to the gift shop to buy the big Smarties.

One day while we were in clinic I mentioned to our doctor that Caitlin was doing so much better on these drugs than I ever thought possible. She still had her hair, she hadn’t been sick too often, and she was able to go to preschool. Other than being tired often and having dark circles under her eyes, she was doing so well. He sympathetically told me that in most cases if the patient wasn’t affected by the chemo, the cancer wasn’t either.

After the holidays our social worker approached us about Make-A-Wish. We were a little hesitant at first because this was another reminder of the seriousness of Caitlin’s diagnosis. However, after speaking to MAW and being assigned a wonderful married couple as wish granters, the idea of letting Caitlin choose a wish felt right. With that said, having a four year old attempt to make a decision when the sky’s the limit is no small task!

After talking and listening to Caitlin, we narrowed her choice down to a Disney trip. We were thinking Disneyland, but were told that wasn’t “special enough.” If Caitlin wanted a Disney trip, they were sending us to Disney World. Our vacation was planned for the week of Easter.

Most families who choose a Disney World wish stay at Give Kids the World, a special resort created for wish families. The village consists of condo type homes, a restaurant, ice cream parlor, miniature golf, a pool and splash pad, etc. While we spent a lot of time there, our family stayed at the Disney Polynesian Resort because GKTW was full. We loved our time at GKTW. Caitlin rode the merry-go-round over and over, Caleb ate his weight in strawberry shakes, and we all loved the night the Disney artists visited, and celebrating Christmas complete with Santa, Mrs. Claus, and snow in Florida.

Wish kids are identified by a special button they wear. At the time of her wish, Caitlin was a huge fan of Bear and the Big Blue House. We were excited there was a live show, and Caitlin loved it. Afterwards she wanted to meet Bear. I asked a cast member if it would be possible to arrange a quick hello, and she politely told me he doesn’t meet with the public, then she spotted Caitlin’s magic button and quickly said she’d be right back. Our family was standing in the now empty theater and out came Bear. It was awesome. We were so grateful they would make this exception.

The same type of thing happened on Easter Sunday. We decided we’d go to the Grand Floridian for the Princess Breakfast, but once we got there, we could see they were full and there was a long line of people still waiting to get in even though it was rather late in the morning. Clint asked a hostess if they were taking reservations and she said no. Right about that time Caleb, Caitlin, and I walked in and one look at the button got us a table within minutes and the offer of a special picture of Caitlin taken with all the princesses.

Although the parks were full due to Easter/Spring vacations, we were allowed to ride our favorite rides as many times as we wanted without getting off, and when the kids wanted to meet a character, they were taken to the front of the line. We have so many wonderful memories of this week in Disney World. It was such a gift. When we talk about this vacation all our memories revolve around how special we were treated and how happy we felt. It was the perfect wish.

Caitlin’s chemotherapy treatment continued and she was patient and compliant. She did everything asked of her, even when it was painful or scary.

With that said, MRI’s are probably the worst part of having cancer for Caitlin. For several years, she was completely sedated as the MRI’s took over an hour due to the scanning of both the brain and spine, with and without contrast. The problem with sedation, other than the risk, was the drugs turned our normally sweet child into an all-day terror. It was rough.

As she grew older, we worked with Child Life to prepare her to have MRI’s without sedation. She had at least two of them without drugs, until one bad experience when we had a Radiology Tech we’d never worked with before. He didn’t talk to Caitlin during the scan, something she was used to and counted on, and she was afraid she’d been forgotten. She then attempted to unstrap herself and crawl out of the MRI. She’s never had a non-medicated MRI since, although she’s tried. “Scanxiety” is hard on her, and on us.

Caitlin still has her brain tumor and while it has remained stable, having scans is the only way to keep an eye on the tumor and track any growth and/or enhancement, both indicating activity. Unfortunately no MRI scan is exactly the same and we’ve had some scares over the years. When we get questionable results, the only thing we can do is wait for the next MRI.

Ten years ago this month Caitlin finished chemotherapy. For most families, end of treatment is a day of celebration, a time to ring the bell in clinic and have a party with your medical team.

Our experience was the opposite of a celebration and I’ll always remember it as a difficult day. At the end of treatment, we knew Caitlin’s brain tumor hadn’t shown any positive changes and we didn’t know if the treatment we’d put her through had even made a difference. She had finished a difficult chemo protocol and all that was left was to watch and wait. It was miserable knowing that a tumor still existed in Caitlin’s brain and that we were going to stop fighting it for a time. I felt helpless, depressed, and kind of desperate. Our oncologist was apologetic and kept telling us we still had options… for when additional treatment would be needed. Caitlin had had her PICC line replaced with a PassPort halfway through her treatment and our doctor told us she’d like her to keep it. A new plan was made for Caitlin to have MRI’s every six weeks, and if there were no changes, we’d move to every three months. I don’t think anyone believed this would be the end of treating her cancer.

In May of the following year, Caitlin finally had surgery to have her PassPort removed, and gradually the time between MRI’s increased. Over the years, we’ve had good news and bad news, lots of MRI’s, some late effects of cancer treatment, and many different types of therapies. We live from one MRI to the next always hoping for a stable report, and up to this point there has never been a need to have additional treatment.

I don’t know if we’ll ever have a true cancer-free declaration to celebrate, but we most definitely consider Caitlin a survivor. At this point we’ve come to terms with where we’ve been, and we have hope for what the future will hold. We’re grateful for the life we’ve shared with our children and we pray they will both enjoy long, happy lives full of the things that will bring joy and contentment. While I’d never want to do it again, or have anyone else have to go through it, the very real possibility of losing your child makes you a different kind of parent. As a family we have scars, but we’ve also had an increase in faith in a loving Heavenly Father, the knowledge that we can do hard things, and unconditional love for one another. I’m not sure if this is our happy ending, middle or just the beginning, but I’d like to believe we’re all better people for the lessons we’ve learned along the way.