Having our 3 year old diagnosed with a rare pediatric cancer has definitely been the most challenging time in our lives.
Having her beat that cancer and be deemed “No Evidence of Disease” is a surreal moment to experience.
Our daughter is now 4 years old, prepping for kindergarten, playing soccer, loving life, and enjoying every moment. Everything is perfect again.
Or is it?
Below I will aim to share my personal experiences, thoughts, and feelings since our daughter finished her chemo treatments. Our family dynamics changed. I changed. You can’t go through an experience like that and not change on some level.
The Reality of Life After Cancer:
You will always worry about the health of your child(ren). Of course every parent worries about the health and well being of their child(ren). Before we knew Mary Harper had cancer, she experienced a week’s worth of non-stop vomiting with no other apparent symptoms. Then shortly after she seemed to recover from her constant puking, she then had a fever of 105 for about a week, again, with no other apparent symptoms. We took her to the doctor numerous times to have her evaluated and every time we were told she had a viral infection and her body was getting rid of it. She didn’t act sick. She was running and jumping around. Although she was sick with the vomiting and fevers, she otherwise acted like a perfectly normal 3 year old. About 6 weeks after our second child was born, we noticed Mary Harper had a huge lump sticking out the left side of her stomach. The following day we were informed of her diagnosis, Stage IV Wilm’s Tumor. Ever since she was diagnosed I have become extremely aware of the health status of our entire family. We went from Mary Harper being monitored weekly by her oncology team to now only seeing them every 3 months. I felt so much uncertainty when she finished treatment. During her treatment we would sneak into her room every night and take her temperature. This was because if she had a fever of 100.4 or higher we had to get to our hospital immediately where she would be admitted for a minimum of 2 days. The habit of checking on her every night continued after treatment. We still check her skin for a fever every night. Every fever, stomach ache, leg cramp, runny nose, skin rash, we were emailing our oncologist along with being seen by our pediatrician as soon as possible. I created an incredibly strong fear of somehow missing one or both of my children having another life threatening illness. I am aware how unhealthy this much anxiety can be. And I am currently working this out with my therapist.
You will need to speak to someone. I didn’t start seeing a therapist until recently. I wished I had done it sooner. I had so much built up in my head that I couldn’t think straight. So much fear. So much worry. So much darkness. So much anxiety. I cried at the drop of a hat. I still do every time I think about this experience. I am crying now as I write this post. It’s still so fresh for me. I cry for the insane year it has been. I cry because she survived. I cry because my precious child had to endure so much at such a young age. I cry for all the kids who have to experience this. I cry for the mothers and fathers who have lost their children to this terrible disease. I cry for the parents who have yet to discover their child is sick. I highly recommend talking to someone. Whether it be a therapist, friend, family member, or simply writing it all down. Get it out. Your mind can’t take all of those thoughts and feelings.
You won’t always hold your shit together. You will fall apart. Randomly. I was teaching a character trait lesson on bravery to my students and I read the book “Alex and the Amazing Lemonade Stand“. I couldn’t get through the first two pages without starting to cry. I read that entire book with tears rolling down my cheeks. I never want Mary Harper to forget what she went through. She deserves to remember it, every detail. She fought so damn hard. She has a gnarly scar on her abdomen to prove it. I heard so many times “Y’all are so positive through all of this!”. And we were to a point. We portrayed a side of us we wanted people to see. We didn’t want people to see pictures of her massive tumor that took over her body. We didn’t want people to see her bent over, slouching and limping for weeks after her port was placed in her chest. We didn’t want people to see her vomiting in the car on the way to treatments, me holding a bag to her mouth, not being able to give her anything because she was being sedated for radiation. We didn’t want people to see her weak, even for a second. We wanted to show people how happy she was through all of this. We wanted people to see her dancing at a restaurant after an all day chemo treatment and radiation. We wanted people to see her shave her own head when her hair began to fall out. We wanted people to see her excited over all the cards she was receiving from people all over the world. We wanted people to see her smiling and enjoying life, even during the darkest of times. I remember the night we brought her home from the our two week stay in the hospital after her initial surgery and first chemo treatment. She had her port placed and it was accessed (meaning she had a needle in her chest so the nurses could draw blood and hook her up to her chemo regularly.). She was sleeping on our floor in our room. I was silently crying in bed thinking how stressful and scary the past two week shad been. She suddenly sits up and says to me, “Mommy don’t cry! You have to be brave like me!” I lost it. I still think of this and cry. How could my 3 year old be so wise at her age? But she was. She showed me how to smile through the pain. She showed me how to be brave.
You will question your life choices leading up to that moment. When we received the diagnosis of Mary Harper’s condition I had never heard of Wilm’s Tumor. It’s a rare pediatric cancer that affects the kidneys. The tumor grows around the kidney(s) and infiltrates the abdomen at a rapid pace. She had a regular well-check appointment in April of 2017. Everything was normal. Then in August of 2017 we were faced with absolute darkness. I learned that Wilm’s Tumor cancer genes develop during pregnancy. I fell apart when I heard this. Thinking back to my pregnancy with Mary Harper I felt so guilty and I blamed myself. I ate everything I wanted and craved. I didn’t really work out much. Because Wilm’s Tumor is so rare, there isn’t a way to test for it. This particular type of cancer grows extremely fast once the cells generate. I still feel extreme guilt for not catching it sooner. We had just gave birth to our other daughter about 6 weeks before Mary Harper was diagnosed. Looking back at pictures the tumor is obvious now that we know what we are looking for. There’s no way to know for sure why or how Mary Harper developed this cancer. But she did and she kicked it’s ass. She’s stronger than I will ever be.
The hospital becomes your safe place. It took us a while to get used to having to go to the hospital every week for treatments and blood work. But eventually it became our routine. Mary Harper grew to love it! We became very close to the nursing staff at our clinic. Mary Harper always had energy and a spunky attitude. She never let her disease get in her way. She would be so excited when we were going to the “Button Hospital”. She started calling the treatment hospital the “button hospital” because that is the one she would have her port (button) accessed for blood work and treatments. Our local hospital came to be known as the “Needle Hospital” where she would have her weekly blood work labs completed. Once she was diagnosed I couldn’t wait for her to be finished. Then the day came where she got to ring the bell signaling her completion of treatment. I was anxious. For 8 months our daughter was on constant watch from a team of doctors. And now were had to wait to have her evaluated every 3 months??? I wasn’t ready. I still live for the next scan. I’m anxious to get the results as soon as we can. That will never change.
Your entire family will be sick. We knew Mary Harper would have a low immune system for a year or so once she finished her treatment. We fully expected her to catch everything she could once she started back at daycare. What we didn’t expect was the rest of us to be sick as well. Both of our girls started back at daycare in July 2018. We have all been sick since then. Ironically Mary Harper has been the healthiest of all of us. Other than a cold, an ear infection, a few sinus infections, and the flu, she’s been great! I know that sounds like a lot, but through all of those illnesses she was very energetic and lively! The rest of us have caught it all, from numerous sinus infections, ear infections, developing asthma symptoms, the stomach bug, hand foot mouth, high fevers. Our other daughter has been to her doctor about once a week since July. Everyone takes vitamins, probiotics, we keep a very clean house, and yet we attract sickness like a magnet. We knew the first year post-treatment would be difficult on everyone. Our immune systems have been in shock. We are nearing the end of the first year so hopefully things will start looking up soon.
You will learn to truly cherish each moment. I’m not saying everything will suddenly become perfect and you’ll never have bad days. Believe me. Those days will be there. Some days it takes a bit more reminding to stop and cherish each moment. There were days I was struggling so bad with the fear of my girls getting sick again. When I stopped to think about it, I realized how lucky I am to have the chance to worry about things with them. On days when Mary Harper is asking a million questions, and AJ is screaming because she wants the pink cup and not the yellow one, I need to remind myself how lucky I truly am. Sure those days are hard. But I’d rather have those days than not at all.