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You Are Never Ready

You are never ready to hear your child has cancer at any age. We just celebrated my son Matt’s 3-year anniversary of ringing the bell (finishing chemo), I can say it probably is the first time in over 6 years that I have been able to sit back and breath. 

Our cancer journey began like any other health issues with a 19-year-old. Matt was not feeling well, but nothing seemed urgent. Matt was weeks away from going back to Denison University for his sophomore year. My husband and I were on our way back from a vacation when our older son, Tim, said he would be picking us up from the airport. Matt was not joining him as he had not been feeling well over the last 2 days. 

When we got home, Matt greeted us. I was surprised at how white he was. As the expression goes; he was as white as a sheet. Looking back, I should have been more concerned. I just told him to go to bed and get a good night sleep.  

Early the next morning I saw Matt in the TV room. Matt was not an early riser, so I knew something was off. He said he was feeling awful. A zit under his arm was really bothering him. As it was a Saturday morning, I knew the best option was to take him to urgent care and maybe get him an antibiotic.  

The urgent care was crowded. In hindsight, it might not have been the best place to take someone I would find out later was so sick. The staff at the urgent care said that he might have a staph infection and suggested I go to the local area hospital.  

Here is when things went from getting an antibiotic and going home to, wow… something much more serious is up with Matt’s health.

Luckily, the local hospital was minutes away. Here is when things went from getting an antibiotic and going home to, wow, something much more serious is up with Matt’s health. Matt was taken into the exam room. They tried to draw blood. The problem was, they could not find a good blood vessel… Concern number one.  

The staff was worried enough to call our general practitioner. I did not know they had called our doctor until he showed up to talk to me and my husband. He did not mince words. He came out immediately and said there was a very good chance Matt might have leukemia. I of course focused on the word “might” not wanting to admit Matt had cancer. I was in denial.  

After that, an ambulance was scheduled to drive Matt to Seidman Cancer center in Cleveland. This should have been concern, number 2-the staff was not comfortable with me driving Matt to the hospital. What kept me calm during the ride to Seidman was that it had not sunken in that Matt was in for the fight of his life. Matt was immediately admitted. He was to spend the next 33 days in the hospital and have continuous chemo treatments for the next 40 months. 

So began our new normal, night one. Matt and his father spent the night in the hospital. In all they spent 33 nights in the hospital together. I drove home from the hospital that night in tears and shocked, what had just happened! 

Our lives as we knew it had totally changed. Matt, God bless him, will always say “for the better”. Treatments initially were very difficult. Naturally, as the staff had to start killing the exploding infection in Matt. It was hard to see him in such pain, I felt powerless.  

We are so thankful that Rainbow Babies and Children’s hospital had the Angie Fowler Adolescent and Young Adult Cancer Institute and to Teen Cancer America.

The wonderful thing was how positive Matt was during treatment. His positive attitude made the cheerleading much easier for me. 33 straight days in the hospital. We are so thankful that Rainbow Babies and Children’s hospital had the Angie Fowler Adolescent and Young Adult Cancer Institute and to Teen Cancer America. Matt was going to be treated as a teenager not as an adult nor a child. There is a difference.  

After getting Matt’s health stabilized, the initial protocol was a new treatment every few weeks. As a planner, I always wanted to know what treatment was next. I soon found out that was not how the staff communicated. We were only told about each treatment as they happened. Before Matt’s diagnosis, I would have never thought this was the best way to approach his treatment. Now, I understand it was to keep us from looking too far ahead. Stay in the present.  

Matt missed his sophomore year at Denison. Attending college that first year of treatment was not really an option.  He did go back for the fall semester the next year and then attempted the spring semester. Juggling the treatments while attending college ended up being too much.  

It was tough to see him so disappointed. He was so frustrated. We did what we could do to distract him the weeks he didn’t have chemo. We went on trips. For the first 2 years after his diagnosis, we were extremely careful about where we took Matt and who visited.

Knowing where the nearest hospital was  on every trip was very important. On one occasion we had to rush him to the hospital after we landed at Cleveland’s Hopkins airport. Another time he tried to be a host to his cousin for New Years. This was really tough for him as the treatment just finished was an incredible drip of chemo for 24 hours and then he was expected consumed water through drinking and a drip to flush the chemo out of his body. It was exhausting.

I was always so impressed how tough Matt was throughout his treatment. It was incredible to think Matt, a 19-year-old, was learning how precious life is at such an early age. We had no choice but to live our lives and live without fear. I constantly prayed the tough times would end quickly.

Matt logically got tired of the emergency room visits. In the spring after his diagnosis, he came home after a tough round of treatment. The nurse told me that if he vomited too much he needed to come in and be evaluated. No coaxing could get him to go with me to the hospital until his father came home from a trip and made him go. Matt used one of his nine lives over that weekend.  He was really sick and we had little time to waste once he got to the hospital.  

Thinking about it now, I was more frightened that weekend then almost any other time during the treatment. I knew Matt should have gone to the hospital, but he refused to go and there was nothing I could do. We were very fortunate nothing more serious happened. 

We had many little scares on long the way. Matt did end up going back to Denison. The school was incredibly accommodating giving Matt his own room and bathroom while the on-campus infirmary was able to help him when needed. The best news is Matt is a Denison Alumni!

It has been over 6 years since Matt was diagnosed. Matt is doing really well. For me it is a relief to hear he is cancer free, but thoughts always stay in the back of my mind. How is he really doing?

Our lives for the first 40 months were focused on making sure everything was being done to help Matt succeed physically and mentally. After he rang the bell, we have found our new sense of normal.  We adjusted to post cancer life with Matt.

Many families are not so lucky. After the diagnosis, the family’s main goal is to support the cancer patient through the treatment. Sadly, for some families this is very difficult.

Matt and I have jumped into helping others through volunteering and advocacy. The diagnosis has given us purpose. Matt said this early on in his treatment and he is right! We know we are very fortunate. Matt survived and we also had the means to financially adjust our lives to keep him on track to kick the cancer.

Many families are not so lucky. After the diagnosis, the family’s main goal is to support the cancer patient through the treatment. Sadly, for some families this is very difficult. The sacrifices and adjustments can really hurt financially and emotionally. A parent or spouse ideally should be ready to take the patient to treatments. This can be rough on employment. Paying the bills insurance does not cover, getting to treatment, paying for parking or all the little things you might not think of; that can also take its toll on families too.  This is where Matt and I have put our energy, found our purpose.  We are determined to help those families in tough situations, so they can focus on helping their child or family member get better.

Organizations like Teen Cancer America and Leukemia and Lymphoma society are helping everyone through their journey and inroads to curing cancer. I would be remiss if I also did not thank the wonderful people at Rainbow and Babies Children’s Hospital. Because of their tireless support and care, Matt is here with us today, better than ever!