My cancer is stable, so why do I feel guilty?
It's hard to receive good news about my health when my daughter has Sanfilippo
In 2017, my daughter Abby was diagnosed with Sanfilippo syndrome, a rare, terminal disease. It’s sometimes referred to as “childhood Alzheimer’s” because the symptoms are similar.
As a small child, Abby used to be able to speak, interact with others, and independently perform many tasks. This disease is gradually robbing her of many abilities, including speech, cognition, and motor skills. She will continue to decline in health until Sanfilippo claims her life.
My own cancer diagnosis
Before that, I was diagnosed with colorectal cancer in 2015. The cancer then metastasized to my lungs in 2017, and I’m still dealing with it today. When treating metastasized cancer, patients must stay ahead of the disease, so my regimen as a cancer patient is to undergo scans every two to three months. The results of these scans dictate my treatment.
The last two scans I had showed no growth in my tumor, so I’ve been given a temporary reprieve from chemotherapy over the past several months. It’s been so nice. As my oncologist reminds me, however, I’m always aware that the cancer will grow at some point and possibly spread to other places.
Scan results stir up emotions
When it’s time for a scan, my husband and I often inventory our feelings and talk about our predictions for the results. That’s what we did when I was recently scheduled for a new scan. Since I had two in a row that showed no tumor growth or indications of disease spread, we both were concerned that the results of this latest scan likely wouldn’t be favorable. I couldn’t have another good scan, could I? That seemed to be pushing my luck, we thought.
We were wrong. The scan again showed no growth of the tumor in size or intensity, and no new tumors were spotted. Such great news! We were elated and so surprised. My break from chemotherapy continues, and we’re so thankful.
And then it hit me: So many others are not this lucky, and my own daughter is one of them. She has a terminal illness that plagues her every day.
Sanfilippo syndrome is unfair to Abby
Where is Abby’s good news? When does she get a break? Instant guilt set in, sending me from relief to despair. It’s so unfair: Not only does her disease continue to do its damage, she can no longer tell me if and where anything hurts because her speech is gone. I felt so guilty that I’d received good news and had enjoyed it without thinking of her.
I’d take Abby’s disease away from her in an instant if I could, sparing her from all the pain and loss. Any parent would make the same choice. We hate to see our children suffer in any way, and it’s such a helpless feeling to be unable to do anything about it.
Shifting my focus toward awareness
After some time, thought, and prayer, I decided I should embrace my good news. It gives me more time with my family and allows me to continue fighting for Abby and all those with Sanfilippo syndrome. There’s still no treatment or cure for this disease, but instead of focusing on how it’s unfair, my energy is better spent on continuing to raise awareness. That’s what I intend to do.
If you’re reading this, I ask that you tell at least one person about Sanfilippo syndrome. Increased awareness is key to finding a cure!
Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.
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