When you make the decision to have children, to bring life into the world, the moment they take their first breath they are in your care. You want to protect them, do everything you can to keep them safe, put them in bubble wrap, but you also need to let them run, jump and get scraped up.
As evidence of this, our daughter, Tilly broke her right arm in June 2020, but it did not slow her down in the slightest and she began going by the moniker Tilly “The Destroyer.” This also coincided with her summer jam/theme-song, “Seek and Destroy,” by Metallica.
The cast was taken off after three weeks and the break was well healed on x-ray. In late November 2020 we noticed that Tilly was experiencing some atrophy and weakness in her right arm. Since it was the same arm she had broken in June, we thought she was just having some atrophy from the break. We saw an orthopedist and the plan was to do physical therapy for six weeks and if it didn’t help then the next step would be getting a sedated MRI done.
Six weeks of physical therapy did not make a change in Tilly’s strength, so we scheduled an MRI for Tuesday, February 9, 2021. The MRI revealed a tumor in her cervical spine that was pressing on her spine and causing the physical impairment. Our world changed in an instant. Tilly underwent a nine hour spinal surgery where it was discovered that because of its location, the tumor couldn’t be removed, but they were able to get a biopsy and confirmed the diagnosis of a low grade glioma. After spending weeks inpatient at a rehabilitation center relearning to walk, due to loss of mobility resulting from her surgery, she began chemotherapy to halt tumor growth in March 2021.
Since then, she’s gone through a grueling 70 weeks of weekly outpatient chemotherapy sessions, with all the ER visits and hospital stays that chemotherapy brings. Tilly completed chemo July 2022 – but in terms of being at the end of her treatment, it’s more complicated. Because of the type of tumor and where the tumor is located, Tilly will never go longer than three months between MRIs for at least the next twenty years. All of the research shows that there will be periods of tumor growth, where she will reenter chemotherapy, and periods of stability until she reaches the age of around 25 years old, when she– and it– will stop growing. The survival rate for children with these tumors is very high, but depending on the extent of the tumor growth and side effects from multiple rounds of chemo, it can become a quality of life issue. For us, the goal now is to get Tilly to the age of 25 years old in the best shape possible.
Because we want to take advantage of the current tumor stability and set Tilly up best for the future, our day-to-day schedules are packed with appointments for occupational therapy, physical therapy, aquatic therapy, equine therapy, chiropractic sessions, and naturopathy. Though we are only at the start of this journey, this is without a doubt the most emotionally and mentally challenging thing we have ever gone through… and it has had an effect on our whole family.
As a testament to this, we sometimes “lose” our oldest daughter, Josephine. We lose her to her room, in which she does everything except actually sleeping– since Tilly’s diagnosis, she has moved her mattress onto our bedroom floor. We lose her to the iPad, where she listens to books and music, plays games, and makes videos of herself talking. We lose her to silence, creating an absence that is just as hard to bear as her cries for attention. We lose her even sometimes when she is making as much noise as she possibly can to try and be heard, seen, or acknowledged anywhere over, under, between or around the seemingly insurmountable amount of space Tilly, her younger sister by almost four years, has been consuming this past two years.
But of course we do see her, hear her, listen to her and love her beyond words. So, when we started to lose Josephine, we looked for ways to show her that we see her. At one point, Josephine panicked about a pain in her neck– since Tilly’s diagnosis, every ache and pain rings alarm bells in her head. We wanted her to know that we were taking her concerns seriously, that her needs were being addressed. We were able to get Josephine to art therapy and neurofeedback. These therapies helped her process what had happened. We are all feeling more grounded, but we continue to need support. We were recently able to escape for a weekend retreat with Rett’s Roost and connect with other families who knew what we were going through. The children bonded and were encouraged to play and have fun. They were allowed to just enjoy being children and run around like maniacs in a foam party, run with the goats and hold the chickens. We were able to connect and heal as a family through art therapy, pizza parties, drum circles, and aromatherapy sessions.
We are beyond grateful for Rett’s Roost, indebted to them really because they provide this amazing space, these amazing experiences where in the most positive and productive ways, the parents and kids are celebrated. They are all the celebrities, not just the one with the diagnosis, but siblings and parents as well!
