Childhood Cancer Awareness Month
Our lovely daughter Rowan became the second child in our family in May 2007. Everything about her was normal. Ten fingers, ten toes, pinch-able cheeks and a solid appetite.
After her third birthday, we celebrated with family and followed it up with a great trip to Williamsburg, VA. What we didn’t realize was that in the 3 months after her birthday, her body decided that it was done being normal.
August 23, 2010 is a day that we will always remember. That day, thinking that all she had was a fever, was the day that we spent 4 hours at urgent care, enduring test after test because they couldn’t figure out what was wrong.
They finally took a blood sample and came back to say, they had made us an appointment at Children’s Hospital to speak to a specialist there. When we checked in, they put us in a room and asked “do you know why you are here?”
Do you know why you are here?
My husband and I looked at each other and glanced at Rowan who was coloring a picture. We had no clue. The next words were, “your daughter has cancer”.
Your daughter has cancer.
How could that be? She must have an infection of some sort, right? Not cancer. My child is normal, how could she have cancer?
They admitted her into the hospital and immediately began treatment. She was poked and prodded even more. Every time she had to have something done, she received a sticker that was placed on her favorite Hello-Kitty shirt.
Within 24 hours Rowan had a bone marrow biopsy, and chemotherapy into her spinal fluid. They also placed a port into her chest so that she could receive her chemotherapy directly into her body and not through her veins.
We had so many people looking after our daughter that our room became a revolving door of people to meet, and business cards to collect. A binder was given to us to not only keep track of her treatment progress, but also the names of her treatment team.
After 7 days in the hospital, we went home to start living the new normal.
At this time Liam, her older brother was 8, just about ready to start 3rd grade. We had figure out how to explain to him that his sister has cancer and that even if we do everything right she may die? We did what we had to. We explained it, kept a positive attitude, took a deep breath and took
each day as it came.
Luckily after the bone marrow biopsy and DNA testing, it was determined
that Rowan had the “Garden Variety Leukemia”, the one you want to have.
(Seriously, I must have looked at them like they were crazy). In addition, she was a girl under the age of 5. All those things put her into the survival rate of 90%. We were relieved, but in the back of our mind, it was hard not to think that the cancer still had a 1 in 10 chance of killing our child.
During that first month of treatment, our tiny little girl who weighed about
30 lbs, gained 9 pounds because of the medication. She couldn’t walk at
the end of the month, because of the added weight. The steroids that she
took caused her to eat like crazy and made her emotional. 3-year olds are
already a little on edge, and the steroids made it worse. It was like pms times 1,000. She would go from happy to angry just because the green french cut instead of whole.
This was our new normal and I really wanted a do over.
But you have to accept it, there is no choice. No question that as a parent
we would do everything in our power to ensure treatment success.
2 years, and 2 months. A total of 797 days we lived this new normal.
Rowan had over 70 clinic visits, took 29 medications, had 17 spinal taps, 4
bone marrow biopsies, 4 ER trips, and 2 hospital stays, and then she was done. The port was removed, we scheduled the end of treatment party and celebrated November 2012. We were relieved and took a deep breath she had beaten cancer.
Let’s fast-forward 7 years to the present. In that time we have learned a lot of new information:
- Rowan will have to be screened every year for the rest of her life to see if the cancer has come back or a new cancer has developed.
- Every 5 years she will need an echo cardiogram due to one of the medications potentially causing heart problems.
- She has visited with a neuropsychologist and she has some learning issues probably due to the chemo in her spinal fluid.
- Even with leg braces to help prevent tight ligaments and tendons, she is suffering with foot and ankle pain every day.
- As parents, we suffer from a kind of PTSD. Anytime she gets an odd fever or new pain- it is difficult to just wait it out like we used to. We compare everything to the symptoms she had before diagnosis.
- Unrelated to her treatment, Rowan had a ruptured appendix last year.
But after surgery, she continued to suffer from fevers and pain. They brought in a physician from the oncology department to make sure that there wasn’t cancer somewhere in her body.
- We will never know if any new issue, illness, or medical problem is due to her treatment or if it is just the way she is.
The biggest unknown by far, we will never know how this wonderful life-saving treatment will affect her in the future.
Don’t get me wrong, I would much rather to have faced all of this because I have my 12 year-old alive and doing well in sports and school. Not every parent gets to say that. But everyday, there are concerns and questions that no one has answers to.
At 12 years-old, Rowan has accomplished a lot. Since treatment she has participated in gymnastics, soccer, and basketball. Until she found her love for Volleyball. She made the A honor roll the first semester of middle school. All in all, our story has a happy ending, with a potential sequel.
September was finally decreed in 2012 to be Childhood Cancer Awareness Month. A time to recognize the difference between children and adults in the treatment and the importance of researching the long-term affects.
As you can see, September isn’t just the start of school for our family, it is an opportunity to educate others on Rowan’s history and future and bring childhood cancer awareness to as many people as we can!