Just when we’d start to get comfortable, we’d get a hard dose of reality…
Holding our 3 year old in one lap, our 1 year old in the other, everything changed when we got the report— “we’re so sorry to tell you this, the vomiting your daughter is having is due to pressure from a brain tumor. Unfortunately, it is in a location that makes it too risky to remove, but we need to try to get a sample to know how to treat it. We will have to carefully cut right next to the brainstem that controls things like breathing, swallowing and regulating your heart rate to get a piece of tissue for a treatment roadmap.”
That was just the beginning of many hard conversations. “The next step will require your toddler to be hooked up to an IV for weekly chemotherapy infusions that are 6 hours long. She will be nauseous. It generally takes about a week to recover from the infusion, then we will start the next treatment. This will be the routine for 18 months…”
Just when we’d start to get comfortable, we’d get a hard dose of reality. “The tumor continues to grow. This next chemo is a 4 drug combination that she will take every 6 hours around the clock. Each drug has its own side effects [insert long list]. You cannot eat foods with tyramine which includes [another long list].”
Etc. etc. etc. Hospital visits, MRI’s, ER’s, pokes and procedures. There are a limited number of pediatric brain tumor treatment options, so we have to conserve, and save them until absolutely necessary. Like time-outs, we choose strategically and cautiously when to use them. We watch-and-wait…painstakingly letting the tumor grow until she becomes symptomatic, literally she broke her elbow from falling. Every time Ana’s tumor starts to cause problems, the challenge is to predict which treatment path will be aggressive enough to stop the tumor, yet still ensure a quality of life worth living. She has been on treatment for 8 of the past 12 years.
Through it all, Ana consistently rallies and does unbelievably hard things. She faces challenge after challenge, with little reprieve. She has over 1,500 beads of courage, each bead represents a chemotherapy, medical procedure, doctor’s visit, etc. Along the way, we learned to stop pretending we were in control, learned to roll with it, make the best of it and focus on the good. There is so much good in the world—the Melby Memorial crew are evidence of it!
It can feel, at times, like we are living in a house on fire. Perspective shifts, expectations change, and soon we realize that we’ll be ok if we all just make it out alive. Nothing.Else.Matters. Ana, almost 16 years old now, is in her 8th line of treatment. The past 2 scans have revealed a new treatment regimen is working and providing tumor stability and cyst shrinkage! This is a huge WIN!
We cannot thank you enough for choosing our family to be the recipient of the 2020 Melby Memorial. It showed great character of all involved to pull it off safely amidst a pandemic. Thank you for seeing and honoring our exceptional toddler turned teenager who perseveres through it all. At the time of the tournament, Ana was wearing a brace because the tumor damaged a neural pathway, causing her to lose control of her right leg and foot. The funds raised covered the out-of-pocket expenses for intense rehabilitation. Her relentless hard work with your financial support to cover what was not covered by insurance gave her the priceless gift of a fully functional gait!
With deepest gratitude,
the vanKoeverden family