As I’m sitting here with Ben, after sending Brooklyn off for her end of therapy MR, I cant help but feel some anxieties that take my breath away. In the beginning when we first got Brooklyn’s diagnosis of her grade three anaplastic ependymoma, I worried about what the chemo would do to her, how it would make her feel and would it make her sick all the time. Now at the end of her treatment I sit here scared of what happens now that she’s done with chemo.
For the past 18 months, we have been in constant contact with providers from her nurse practitioner, oncologist, neurosurgeon, physiatrist, neurologist and more. From weekly checks during each cycle, to having weeks off in between mini cycles, we were getting blood work done and having eyes on her all of the time. Now, we are at the finish line. The end of six rounds of chemo that would make us see just how much of an effect this has on our child. When we started this journey with Brooklyn, we thought the end would never come. However, when you measure your year in chemo, scans, appointments, therapies and mini cycles, time seem to fly by. Like honestly, I have no idea where the last year and a half went and couldn’t wait for it to be done.
So then why am I having so much anxiety about her being done with treatment. Is it because I worry about the cancer coming back? Yep. Do we have a good prognosis because her neurosurgeon removed the entire tumor and her scans have been clear for the last year and a half? Yep. Did her oncologist put her on a great protocol for chemotherapy with this type of cancer? Yep. Then why am I in a panic? Because cancer sucks, and chemo sucks… and so do the side effects.
We are starting to see the effects that the chemo has had on her little body, and that makes you question whether you’ve done everything right as a parent to try to prevent these side effects. Brooklyn has spent a good portion, if not all of her treatment period in a state of anemia. She has spent 18 months getting chemo. What do chemo and anemia have in common… well it destroys the enamel on your teeth, and nothing we could have done would have prevented it. Dental work is commonly needed in kids who have gone through treatment and we’re finding out from our providers that this is from the chemo. We knew what the risks were when we signed the consent forms. We have no regrets because we are blessed that our child is still here with us and thriving. However, it’s challenging when youre dealing with parent guilt, finding out that more sedation, anesthesia and procedures are needed to protect and heal what damage the chemo has done. It doesn’t help when providers outside of the oncology world don’t take in to consideration the effects of low anemia and chemo and blame dental decay solely on our child nursing at night. Then I get frustrated with the lack of knowledge about breastfeeding (and this is a breastfeeding positive blog site….soooo if you disagree… bye)(and yes “fed is best” but breastfeeding is OUR journey… you do you). I’m not salty or anything (insert eye roll). I didn’t beat myself up about it or anything.
I was reassured by Brooklyns oncologist that no matter the amount of times we brushed her teeth, what type of fluoride toothpaste we used, that this was because of the chemo. I spent a lot of time being angry about things other providers had said to me but knew in my heart that Brooklyn didn’t get sick once during treatment because she nursed. Gosh, I had the flu in August and this kid did not even get a lick of a sniffle! Breastfeeding is AMAZING… but I digress.
We know that there will be more appointments, more scans and anxiety. We also know that we have an amazing team of physicians, nurses, therapists and chiropractors who have taken phenomenal care of our daughter, who will continue to monitor her and will continue to answer our questions and help us when we need it.
We also know that we will have less frequent trips to the hospitals, more time for play dates, more trips to the zoo, more time to swim with less access days. more appetite, more laughs and less tears. More ups than downs!!
This kid is more resilient that I would have ever imagined, and I thought the doctors were lying to us when they said this in September of 2021.
She is strong, silly, smart but most of all, she is fearfully and wonderfully BRAVE!
Fearfully and Wonderfully Brave 