After two months of working with his doctors to get to the bottom of his chronic complaints of neck pain, it was discovered that my 2-year-old son, Crosby Hayes, was harboring a tumor in his precious little head.
We were taken by ambulance the 45 minutes to American Family Children's Hospital (UW). The tumor was rooted in the base of his skull bone, protruding into his brain cavity. The pressure on his brain stem resulted in not only his neck pain, but also a dangerous instability in his neck, a loss of balance, and a build up of spinal fluid known as Water on the Brain, hydrocephalus. His life was in immediate danger. He was placed in a neck brace to help stabilize him and, days later, he had his first brain operation, in order to open a pathway for the spinal fluid to drain from his brain. Medications to reduce swelling were also started immediately.
More in-depth brain scans led the neurosurgery team to believe that the tumor was either a chordoma (likely) or a neuroblastoma (less likely), both cancerous, both rare, especially in children. We braced ourselves for 30 hours of operations to remove it, and the reality of radiation treatment in the aftermath. A sudden loss of motion in his left arm lead to an emergency scan that told us that the tumor was growing, and the neuro team struggled to find the best plan. 5 days later, Crosby was under the knife for his second operation. 8 hours in, preliminary pathology results told the team that the tumor was likely NOT cancerous. They made the decision to end the risky surgery at that point, shooting the tumor with steroids in an attempt to degrade it. The tumor, which has branches of THREE major arteries travelling through it, was predicted to dissolve on its own, or with the help of chemotherapy. They patched him up with flesh and tendon borrowed from his left thigh. I cried myself to sleep and woke up with peace in my heart. We lived in that safe place of Hope for another 24 hours.
Which brings us to this morning. My toddler lies in a hospital bed as I stroke his forehead with one finger. He is intubated, on a breathing machine, and a thin yellow feeding tube runs down his left nostril. I kiss his toes, whisper "Peeee-yewwww! Those are some stinky feet!" I read him a favorite book. I tell him our friend says hello, tell him we love him. I hold his hand, and I say thank you to everyone and no one at once. Then I leave to get coffee. On my way out, I tell the nurse about the fluid I notice pooling up in his nose, and she collects it to test for the presence of csf (cerebral spinal fluid), which could lead to an infection if it leaks from his incision.
When I'm in line to get coffee at a bagel shop around the corner, my phone rings, and my mom tells me it's time to come back. I know it is not good news. The sign on Crosby's door tells me that his "Brain is Resting!" and that he must have no stimulation, no company, no reading. I know it is not good news. The nurse, who watches Crosby vigilantly for literally 100% of her shift, follows me into the room to tell me the latest update. She looks tired. I know it is not good news.
Pathology was mistaken, she tells me. The cells did not grow as they would expect them to if it was the benign tumor they initially believed it to be. The tumor cannot remain inside his head, after all. The surgeons will go back in next week for a total ressection. I don't hear anything else, but I watch a tear break on the hospital floor. I think it is mine.
If you have ever had the great fortune of meeting Crosby, then he needs no explanation. For those of you that haven't been so lucky, I would love to tell you a little bit about him now. It is very important to me, as his mother, that we do not forget to think of Crosby as the wonderful boy that he is and instead begin to think of him as a brain tumor.
Crosby is just two years old, but he is extraordinary. He tolerates more poking, prodding, waking, and testing than we could ever hope that he would, and my heart knows that is because he has faith that we are helping him.
He is bright, and strong, and endlessly funny. He is a fierce and spirited boy, my Wild Child since day one. He is silly. He is adventurous! He adores animals, books, and the Great Outdoors.
But mostly, he is kind. So, so kind and sweet. He has the biggest heart I have ever been blessed to be witness to. He loves butterfly kisses, snuggles from his Papa, and picking our boogers! Even in these darkest of times, he continues to be a source of joy for me, our family, and all of the wonderful medical staff he has taking care of him.
Crosby's journey is a long and trying one. Along with the tumor removal, Crosby faces a fusion of his skull and vertebrae to address the instability in his neck. He will live the next 3-6 months in something called a Minerva brace as that heals. Depending on what we learn of this tumor, radiation or chemotherapy are likely still in the cards for him. He remains in constant threat of his life, and he continues to surprise us.
In addition to prayers, good vibes, positive energy, and well wishes, we are asking for donations at this time. I am out of work indefinitely, until he is safe and stable and his daily care is no longer so intensive. We will remain in the hospital for, minimally, another 2 weeks, but the timeline remains unclear as his diagnosis remains a mystery. Any money raised will be used for, primarily, Crosby's daily needs. Additionally, it could help to keep bills paid, gas tanks full, and bellies fed. Any funds that aren't immediately necessary for his care will be put toward his growing medical bills. As a pretty prideful person, I struggled with the thought of asking for donations, but without them, I cannot sustain our lives without returning to work. Every cent that is donated will keep me at my child's side as he struggles to survive. If you are a parent, you'll know that there are no words that could describe what that means to me, to us, and to my little warrior. Thank you for taking the time to read Crosby's story and for considering helping us in any way. Big Love from our Little Family.
If you are not comfortable donating to us, we understand! Still want to help? Please consider making a donation in his honor. We recommend places like http://www.fxckcancer.org, American Family Children's Hospital, The Chordoma Foundation, or another cause or foundation you may see fit.
- seth ide
- Rochelle Brooks
- Liz Holmes
- Donlyn-Wesley Kwedar