I would like to open Climbing Up the Polka Dot Tree to other parents, siblings, survivors or fighters… to share their Childhood Cancer journey. I so often get to share my words and see feedback and know that Madeline is making her mark. Today is the first of I hope many stories through September, everyone from a different perspective, a different person and a different situation. There is a lot to learn in this journey… mine was different than most. Read. Share. Comment. Contribute. Change this. I know that this momma needs you to read.every.single.word and help her share Zoey’s journey.
Zoey’s 14 Months so far…
She fell hard at a park, just fell. She falls all the time, but she didn’t get up- not right away. When she did she was limping bad. I told Ben, he said ‘she’s fine’. When we got home I looked at her leg, bent her leg, she was OK.
Her daycare called the next day, the sound of their voice made it seem like they were worried she had been abused. I took her to the pediatrician and nothing was found wrong. She just fell and was bruised and for a week we called her a peg leg pirate.
We laughed, she laughed, and then we stopped laughing.
A week after the fall her left hand stopped working. I was working out and met Ben and Zoey at the Strong ED. 12 hours, 12 long hours in sweaty boot camp clothes, starving, trying to sleep in the ED- before we were finally admitted for an MRI.
24 hours later the MRI team came up, with sad eyes. One entertained Zoey. They asked us to sit. Zoey has a brain tumor. That was all they could say. Then they left.
We cried and screamed and cried and called our parents. We were 32 and 33 with a four year old little girl laughing at Disney movies. It was inoperable but they couldn’t tell us what kind of tumor. We had a 50/50 chance it was JPA versus DIPG. We chose to do a biopsy, we needed to know.
Zoey waking up from the biopsy was the worst moment in my life. Her face was paralyzed. It took every ounce of strength I had not to cry in front of her. No one was allowed and is still not allowed to cry in front of her. Her smile was gone. They couldn’t tell at the time of the biopsy what we were dealing with so they started Radiation right away; not chemotherapy just in case it was DIPG. August 1, 2016, the first day of radiation, we were told that the initial findings were the tumor is DIPG. That was it. OK. So ok… we paused and regrouped.
What the F*ck do we do now?
Our doctor worked with Dr. Kramer at Sloan Kettering, we visited them for a consult. The CED trial was not open and they did not know when it would be back open. We had until January 11, 2017 before Zoey was ineligible. I was jealous of the other kids in the trial… why not Zoey? If we found out a week or two or three sooner we could be eligible, but we weren’t.
We went on our Disney Trip and missed the dates to make the Cincinnati trial. Everything else in the USA turned us down. F*ck. What else is over seas?! There was CED in London, not open. Immunotherapy in Germany that seemed OK. But was it OK? We were taking a chance. We skyped, had our doctor talk to them and sent everything we could. In only two weeks we found an apartment, flights and flew to a country where we couldn’t speak the language- at all. It was OK. We grew to love Germany, we found a family. Hollis, Danni, Cam, Elijah. We met them all, in good and bad. We had hope because of them. Living abroad for two months we needed Zoey to see whatever she could. I knew the world would crash back down on us, but unsure when.
We went to Amsterdam for Ben’s birthday and Paris for Thanksgiving. Celebrating the holidays outside of our 500 sq ft apartment. Our close friends from Fairport, NY visited, with Zoey’s best friend Addy, comprised the end of our 2 month Germany stay. We were scared to go home, scared to face the truth of what we might know. While in Germany Zoey grew to be symptom free, happy. She enjoyed life and the scenery and everything around her. We grew into a humble routine of simplicity.
We flew back 3 more times for only 4 days a piece. We grew in to a routine. Zoey loved to fly to Germany, to go eat their yummy food and handled everything with ease. We met Jose and a family from Belgium. Then the world started to crash.
Zoey’s biopsy created a vapor space in her tumor, a void, an area where the tumor could easily grow back in to. It left no brain tissue to fight against. DIPG started to grow there; then outwards. Germany was stopped.
All I could think was we needed to make it to her dance recital in June, this was March, everyone said it was possible. Was it?! We barely made it. We spent the night before the dance recital in the hospital due to a spiked fever. She could barely dance, she made it, but she wasn’t her. June 9th was the start of Zoey’s rapid decline. Our next date we needed to meet was her Pre-K graduation; June 23rd. She was pulled from school June 20th.
June 21st, Zoey could not walk anymore, she could barely talk, and she lost control of her bowels. This was it. We were here, where so many kids before her have been. Our files were sent to Mexico but she could not make the treatment or trip without severe repercussions; i.e. probably dying down there. She needs to die here, at home, with her family in her bed.
We told our doctor we need to do something and do it now. July 2nd we started Avastin and a Steroid bump. I F*cking hate steroids. I HATE them. I hate them for myself and I HATE them for her. We took her to an end of school party. She wasn’t there. The next couple weeks she was gone. Her eyes, her sparkle, it was all gone. Zoey had lost herself, her joy, her spunk, her light. She was depressed and broken and so were we. We hunkered down. We sheltered ourselves, unsure what to do and if she would come back to light.
She did, slowly, but she did. It took a week to lose it all and a month to bring it back. Another round of radiation and a few more rounds of chemo, she came back. We saw doctors and nurses we hadn’t seen in a year. We didn’t want to see them, to be known and familiar with them. We didn’t want the news, the people, the reaching out, the noise.
As a pessimist, this is not going to end well. Here we are. 14 months. 14 months of hell, 14 months of dread and fear and not knowing if she will have some damn issue in the middle of the night and not wake up. 14 months with a suction machine, an AFO, a wheel chair AND a super awesome rock star child who is on the news more than most people. 14 months to reach a first day of Kindergarten. A miracle.
She should not be here. She is an anomaly, I’ve been told. A grade IV terminal brain tumor anomaly.
People tell me I did it right, the way it should be done. Taking Zoey to see the world and experiences- I cry inside. This wasn’t always the mission. The mission was to have her endure what she can without pushing her too far; seeing the world was a side effect of that. Now- experiences and dreams are all I push for. We made a decision in July this was the last push, the last hurrah. We are not traveling to another country again, we are going to do the chemo and radiation and hope for the best. In the end, we don’t know how she will react and if it would have any effect on her. She did amazing and she’s here. We may do another trial, we may not
We just want her happy now. No more pain. The day-to-day fear of her not waking up is haunting; because it might happen. A headache might push her over the edge. We’ve become emotionally numb; or I have at least. I am numb from the world around me, but for not her. Tears don’t fall anymore, when something bad happens it’s just an ‘OK’. Just numb. That’s the story. These 14 months has made us wiser in ways we don’t want to be and numb in others. But she’s still here, for how long we don’t know but we’re here and she’s happy.
In the end that’s all that bloody matters…
THIS IS ZOEY.