Update

The other day one of Mason’s therapists asked if Mason still sees his oncologist or if he’s “done with that”. Last Thurs around 7pm, my phone rang and the caller ID showed that the call was coming from Mason’s oncologist’s office. Immediately, my heart started racing, my palms got sweaty, and my mind went to a thousand different places. I’ve gotten enough after hours calls from doctors to know that those phone calls are never good. I kept telling myself to answer the phone but I was paralyzed in fear. Is his cancer back? Did Dr. Knoderer take a second look at his blood work from our last appointment and find something? My mind flashed back to the after hours phone call from Mason’s cardiologist last August. We had gone in for a routine echo and got a good report. Mason still had pulmonary hypertension but the cardiologist prescribed a medication that would control it. Around 6pm that evening, I received a call from his cardiologist saying that he took a second look at Mason’s echo and he believed that there was a large hole in his heart. This was the cause of his hypertension and he would need another open heart surgery to repair it. My two biggest fears were, and still are, Mason needing another open heart surgery or Mason relapsing. As my phone was ringing from Dr. Knoderer’s office, I couldn’t help but wonder if one of my biggest fears was coming true, again.

I picked up the phone, and what I heard on the other end was an automated message reminding me of Mason’s upcoming appointment. I was furious. Why did they send this message after hours? Did I get a phone call for an appointment reminder last month? I don’t remember ever getting a phone call for an appointment reminder. Is this a new thing? They should know to make these phone calls during the day! Later on, I realized that my anger was not warranted. It was me who had let fear take over.

When you look at Mason, you see an energetic, smiley, strong willed, little boy. You would never know he had cancer.

Swing

To answer his therapist’s question of how often he sees his oncologist, he sees his oncologist monthly. Each month, we go to the hospital, get his blood drawn, and then see his oncologist to go over the results. The chance of relapse is real and it’s high. Therefore, we cannot go longer than a month without checking his blood and making sure the cancer is not back. To answer his therapist’s other question of if he’s “done with that”, no, no he is not done with that. He will never be done with that. The chance of relapse will always be there. It will decrease. Eventually we will be able to space out his blood draws and visits to his oncologist. After 5 years of being in remission, he’ll be considered a survivor. But his blood will need to be monitored for the rest of his life.

I can’t even bring myself to think of the long term damage that chemo may have done to his body. We’ve already seen some damage. The reason he needed a second open heart surgery was because chemo weekend the tissue in his body, causing the tissue in his heart to be too weak to hold on to part of the repair from his first surgery. Chemo is a nasty drug but it saved his life. It’s a strange thing to have so much hate for something, yet be so thankful for it at the same time. I remember a video that played in the lobby at Riley Children’s Hospital of a mom with a child who had cancer and had been treated at Riley. She said “chemo is what’s making my child so sick but I have to remember that chemo is not the enemy”. Chemo is not the enemy. It was a revelation and something that I had to remind myself of constantly. I still remember the first day Mason started chemo. They had to tell us about the side effects and how poisonous chemo was. “When you change his diaper, you must wear these gloves because chemo will be in his urine making it very toxic.” “If he vomits on you, change your clothes immediately and wash any area of skin that was touched.” I remember seeing the chemo bag for the first time.

Chemo bag

Class A hazardous drug?! Class A?! Hazardous drug?! And this is going into his tiny body?! It made me so uneasy. Until I became desensitized to it.

I’m working daily on not letting fear and anxiety take over me. I’m reading a great book called “Trusting God” by Jerry Bridges. I spoke with a counselor just before Mason’s second open heart surgery and she gave the book to me. Speaking with her was one of the most freeing things. Everything she said, I needed to hear. I physically felt lighter and more at peace after speaking with her. But then Mason had his second open heart surgery, and it was scary and traumatic. Fear took over again.

I’m starting now to sleep better. I’ve had nights of falling asleep shortly after going to bed, and sleeping through the night without waking up. I had forgotten that not being able to fall asleep, being consumed by my thoughts, was not normal. I had forgotten that not waking up a hundred times throughout the night was not normal. I’m also working on de-stressing. I’m not ready to publicly discuss all of the effects that stress has had on me, but I can tell you that stress is terrible for the body. One minor effect that stress has had on me was changing my hair from curly to straight. Who knew that could happen?  I recently visited my hair salon and my stylist told me that my hair was starting to get curly again at the roots. She said whatever I’ve been doing to de-stress is working. It felt very freeing seeing a physical result of less stress.

So, to sum it all up, our journey most definitely is not over. But, we are healing. Mason is growing, has a full head of thick hair, and is laughing. His personality is coming out and his vocabulary is expanding. Speech is his strong point and, oh boy, he has a LOT to say! He’s getting closer to walking. He’ll start developmental preschool in August. I’m not ready to let him go. I love being home with him and I feel like cancer and heart defects stole a year from me of being home with him. But he’s a social kid and he will love going to preschool. I’m making an effort to be intentional with my time with him. To really enjoy him and not always feel like I need to be working with him on fine motor skills, gross motor skills, flash cards, etc. The first year of his life, he had a heart that needed repaired, and had to get shots during cold and flu season to protect him from RSV. We were told by his cardiologist and pediatrician to keep him in a bubble. So, we did. The second year of life he had cancer and had chemo blasting his immune system. We had to keep him in a bubble. But now, we can break out of that bubble. We went to Conner Prairie for the first time and went to the zoo for the first time. Mason had a blast! We go to the park, spend a lot of time with family, and go to Gigi’s Playhouse once a week. Life is good. We are blessed. We are healing.

Zoo M and me

Zoo m and mom

Gigi balls

Gigi music

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