10 Nov A Happy Soul
Our daughter Claire is a happy soul. She always smiles and looks at life in a positive way. When her hands started to shake and she started falling on the stairs and flat surfaces, my husband and I could never have prepared ourselves for what was to come.
Like many, I am working remote, home schooling my children and trying to find the new normal for my family. My husband and I noticed our daughter Claire was becoming very uncoordinated. We discussed this with her pediatrician during her regularly scheduled video appointment. That discussion set into motion a 24-hour flurry of out of town neurological appointments at the DENT Neurologic Institute, MRI’s, neurosurgeon appointments, admission into Oishei Children’s Hospital (OCH), my husband camping out in our car with a laptop and air mattress in the OCH parking ramp because of the COVID-19 hospital visitor restrictions and a diagnosis that our 14-year old daughter Claire had a brain tumor.
My husband and I were in total shock. The news caught us completely off guard. It was not at all what we thought we would hear.
For the next three days, I stayed with Claire by her bedside, my husband remained sequestered in the OCH parking ramp. Leaving was not an option for either of us.
Everything happened so quickly. We had so many questions, but without all the test results, there weren’t too many answers yet. We were so scared.
The worst day of my life was May 5th, the day of Claire’s brain biopsy. They took Claire in for her procedure. I was all alone; my husband was in the parking ramp. We couldn’t physically support each other; we couldn’t hold hands and be present for each other. We could phone and text, but we cried alone, no comforting hugs or touches. It was the longest and most awful day of my life.
Claire came through it; she is so strong.
Claire was diagnosed with a low-grade glioma. The tumor is located right at the top of her brain stem making the surgical option to remove it too risky.
By the end of June, Claire began her first round of chemotherapy. Claire has chemo once a week at Roswell about 1 ½ hours away from our home. Her appointments are usually very early in the morning, so our Child Life Specialist referred us to the Buffalo Ronald McDonald House.
I didn’t really know what to expect. When we drove up the driveway and saw the beautiful mansion, all I could think of was WOW! When we walked in the House we were welcomed by name. How nice is that? The staff made us feel completely comfortable and at ease. We were in the right place. Our suite was beautiful, Claire and I took a bunch of photos and sent them to everyone back home.
We stay at the Ronald McDonald House each week. We arrive the night before Claire’s appointment. Every time we walk through the door, it’s a relief. It’s a pretty special place. We are welcomed with open arms, it’s like walking into a family member’s home.
We feel safe and comforted. The little touches make us feel so special, like our dinners waiting for us in the fridge with our names on them. We can take a deep breath and enjoy the warmth and comfort of the House. Claire and I have dinner, some quiet time together, and get rested and recharged for what the next day will bring.
My days are filled with anxiety. I draw my strength from Claire. She doesn’t let a whole lot get her down. Even with going through the side effects of chemo, throwing up and losing her hair, she holds her head up high. She loves to draw and spends hours with her sketch pads. She is a Freshman in high school this year.
On September 12th Claire’s MRI showed that her tumor was the same size and there was some alarming coloration. Our journey has just started. Claire’s chemo will continue for at least a year. Whether it is a year or longer, I am comforted knowing that the Ronald McDonald House will be there for us and will always welcome us with open arms.
I take it one day at a time and remain strong in my faith in God. I try to keep smiling,be strong for my family, be there for Claire and show her every day that we love her very much. I pray that we will make it go away. That’s all I can do.
– Shelly Schenck