My dear, sweet ray of sunshine. A child who very rarely complains, choosing to hold your fears close to your chest. I am amazed by you, yet my worry is immense. I hope you know I’ll do everything possible to ensure you have an amazing life here on earth.
You were my first child, born June 22, 2001 after what seemed to be years of labor. Seriously. You took your sweet time getting here, but it was well worth the wait. I didn’t know what to expect. Heck, I’d never really been around a baby before, so this was going to be a new adventure for both of us. Gazing into your eyes let me know you were an old soul. Your innate wisdom threatened my newbie parenting status, but instead of worrying about it, we just let it unfold.
For two years, life was pretty good. I watched you hit all your important milestones along the way. This parenting gig was going so well I decided that another baby would be a great idea. A few months into my pregnancy, however, you started getting sick. A lot. Visit after visit to pediatricians and Urgent Cares proved nothing. You had a virus. No, you had a hip infection. Wait, you were just constipated. Actually, I was just a “nervous first-time parent.” Seriously! A medical professional actually said this to me! No one thought to run a simple panel of blood tests. I even asked our pediatrician, “Do you think this could be something more ominous?” She shook her head no.
A few more months passed. You stopped walking. You cried a lot. You had a constant runny nose. I decided I had to stand my ground because I KNEW there was something wrong. We went to the Emergency Room – by this time I was seven months pregnant – and sat there until someone had an answer. Within a few days, we learned the horrible news: Neuroblastoma, Stage IV, unfavorable tumor, high risk for relapse, 20-30% chance of survival. Everyone in the room with us was in shock. You were asleep in my mother’s arms. My dad sat nearby, completely silent. My then-husband held onto me as I sobbed into his chest, repeating “My baby! My baby! How can this be?”
At the tender age of 2 1/2, they hooked you up to poisons that could easily kill an adult. And the funny thing is, you immediately started feeling better! Finally, the cancer was dying and you felt great! I just knew you were going to respond to this therapy. Unfortunately, those first 15 months of therapy were grueling: Multiple chemo treatments, too many surgeries to count, a bone marrow transplant, radiation therapy, and experimental therapy. But you made it through. After 15 months, we heard the precious words that you had No Evidence of Disease.
And, you got a new sister six weeks into the journey. I was so worried about how I’d bring a baby into this hellish environment, but it worked out wonderfully. Madeline Grace was a breath of fresh air we all needed. She gave us a focus even when we were terribly overwhelmed – and you simply adored her.
2005-2009 was a time we were getting our groove back. We moved from Ohio to Colorado. Life continued and we only thought about cancer when your quarterly scans came up. I never seemed to let go of the anxiety revolving around scan time – it was always excruciatingly nerve wracking. But you endured. You started Kindergarten. You made friends. Things were normal.
Unfortunately, right after your eighth birthday, we learned it was back. A routine scan showed a mass behind your heart, attached to your lung and one of your ribs. After I finished hyperventilating on the phone with your oncologist, I came downstairs to tell you. You looked into my eyes as I delivered the news. I had to force myself to tell you. And as the words came out of my mouth, you simply listened. No tears, no emotion. As it was sinking in, your one and only question was, “Does this mean I’m going to die?”
I searched for the sugar coating but (thankfully) couldn’t find it. I told you the truth. I said, “I have no idea, sweet heart, but I can guarantee that I will be by your side every step of the way.” And that seemed to be enough for you. Within a few minutes, you were back to playing/fighting with your sister.
For almost three years we traveled to NYC for a horrendously painful therapy. More radiation. More surgery. More yuck. You told me at one point that you were ready to die because it hurt so bad. You forgot your statement the very next day and I haven’t brought it up since. Once you graduated from the 3F8 therapy in NYC, we found another experimental study in Kansas City. Less invasive. More manageable.
Relapse #2. The day we were told, I lost my mind. We were in a doctor’s office in Kansas City, you were listening to something on YouTube through your headphones. I collapsed against your doctor. She held me as I cried “Not again!” over and over. I’m sorry you had to see that. Your simple statement, “What’s wrong, mom?” sent me into another wave of tears. Your doctor explained that you had relapsed again and you said, “Well, I guess we’ll just have to fight again.”
We started more therapy back in Denver. You turned 12 in the hospital while battling pneumonia and kidney stones. Your beautiful hair fell out for the umpteenth time, but this time it bothered you because you’d be starting middle school in the fall.
You fought another year only to relapse again July 4, 2014.
My darling, you’re back in treatment. Again. I know you’re getting tired but my first promise to always be by your side still stands. I’m not going anywhere. We’ve lost many friends along the way. Your parents got divorced. The financial struggles feel insurmountable. Some people don’t understand how much we need them and how it hurts when they retreat.
You’ve been fighting for TEN YEARS. And that’s not fair. But your tenacity is amazing. You’re here to fight another day. Even when it hurts beyond belief. Even when you’re sad about losing another friend. Even when you’re angry that you can’t be a normal kid. Even when you simply don’t want to.
Now, that, I am afraid of. I’m afraid you’ll get to the point where you simply don’t want to fight anymore. But I’m so proud of the young man you’re becoming. The sweet, sensitive, loving boy who gazed at me with those deep brown eyes 13 years ago changed me in such a profound way. And while I can’t be happy about all you’ve had to go through, I admire you in ways I simply can’t explain.
I am so very proud of you. And we’ll keep fighting, together, even when it gets too tough. I’m here. I will always be here. It’s more than my job, it’s my mission.
You’ve changed me for the better, my dear son.
I love you,
Sarah, thank you for your beautiful writing. When my son first started getting sick I persisted until I got an answer because I knew something was not right. One doctor even told him he just had a pain problem. His swollen face, swollen elbows, bone pain told me otherwise. Leukemia was the ultimate diagnosis and telling him was the hardest thing I’ve ever had to do. He was much older than Ben, at 22, but when is it ever a good time to be told you have cancer. Because he was a young adult and had been away at college, many of my circle of friends didn’t know him well. After initial concern and promises to do anything i needed, (just call), their attention to it seemed to wane. Our family was so caught up in the surrealness of it all I didn’t recognize that I was dealing with much of it alone until recently and it bothers me, alot. Fortunately, my son’s friends stayed true and by his side. They weren’t frightened by his bald head or his drastic weight loss and fatigue. He, like your Ben, is the most amazing young man I know. His strength and absolute determination to kick cancer’s ass kept me going. He finished treatment in July. Every monthly clinic visit for labs scares the crap out if me. I wonder if I’ll ever stop worrying. Thinking of you daily and hoping to spot you at the hospital or at DU soccer someday!
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