On August 3rd I took Kyla to her pediatrician with concerns about her wobbliness when we walks and frequent headaches. They’d referred us to a neurologist and suggested we go to get her eyes tested just in case so the next day I took her to the ophthalmologist. Thankfully friends were able to watch Kaydn for me as he wasn’t allowed to come. The ophthalmologist told me that she has pressure on her optic nerves and that something is pushing against them and she listed a few possibilities and told me to get to Pensacola Sacred Heart Children’s Hospital straight away and that she needed an MRI that night and to be prepared to stay for 3-4 days. I called Jeff on my way home and told him everything and I tried my best not to freak out. I had to go home to pack for myself, Kyla, Jeff & Kaydn. Our friends were amazing and offered to keep Kaydn for us so we dropped his stuff off and off we went to Pensacola. The ophthalmologist had called ahead to let the hospital know we would be on our way there. We got there at 7pm and she had a CAT scan by 8ish and we knew by 9ish that she had a mass and she was admitted to the PICU that night.
The next morning (Friday) she had an MRI and we were told more detail off the mass the following day. She was scheduled for surgery for the Monday but ended up being pushed back to the Tuesday afternoon. That was the longest and worst day of our lives. Saying see you soon at 12:10pm to our crying daughter in the hallway as she got wheeled back to the OR. We didn’t see her again until 1:34am. It’s hard to even describe that moment we saw her. We were given some preliminary pathology results after the surgery and they told us she has Medulloblastoma and hydrocephalus. The neurosurgeon managed to get 99.9% of the tumour out but with where it was located beside/attached to her spinal cord/brain stem they didn’t want to risk getting to close and removing all of it.
Around that time myself and others reached out to St Jude.
Since then she had to keep an EVD drain in her head to help with the excess cerebrospinal fluid and that was eventually removed but unfortunately she had started leaking which then required her to have more stitches placed on one of her incisions where the EVD was. We then got discharged all of a sudden on the 21st which didn’t last long at all. With the two hour drive home we got home and noticed she had started leaking again we spent less than an hour there and then went to our local ER to have them assess her and then drive straight back to Pensacola and she was again admitted. The following morning she went for another MRI and then had the EVD placed back in. The following morning she had an ETV done to try and help with the build up of cerebrospinal fluid but unfortunately that did not work and on Thursday, 25th she had a VP shunt placed. We were then given the okay to transport and Kyla and I were flown by St Jude to Memphis, TN. Jeff drive up that day and met us there. Thankfully amazing friends were ready and willing to help with caring for Kaydn. We spent the night at La Bonheur Hospital for them to monitor her since she had a VP shunt placed the day before and then we were discharged on the Friday. And went over to St Jude for some appointments and moved to their on-site hotel. This was the first time Kyla got to spend the night outside of a hospital in 22 days.
Kyla is now a St Jude patient and will be receiving all of her care and treatments there for the foreseeable future.
After St Jude completed some of their testing they revealed that the main tumor was completely removed but we are now dealing with many smaller ones throughout her brain and coating her spine so she will have the highest dose of radiation and chemo.
She had her port placed on 09/07 and received her first radiation treatment on 09/15. And she finished radiation treatment on 10/26.
We had five amazing weeks at home with dad and brother and nana and papa came to visit from Scotland too. We took a short trip to Disney for a few days and Kaydn and Kyla got to have their first Disney experience and they loved it! Kyla also got to have a special photo shoot with a mini unicorn but cared more for the chickens. She also got to spend her 5th birthday at home and her amazing teacher at her school threw her a birthday party with all of her class friends.
We headed back to St Jude on November 30th and had Kyla’s follow up MRI and LP a few days after and thankfully there is no sign of any new growth in main tumour area and the areas on her spine have shrunk which is amazing news.
Kyla started her first chemotherapy cycle on December 5th and done great and has two blood and two platelet transfusions so far and is due to start her second cycle on January 3rd.
During her first cycle she lost the remainder of her appetite and her weight was decreasing more and more and so she had an NG tube placed which has taken a lot of adjusting to but thankfully she’s doing well with that now.
Dad and brother came and visited for a week over Christmas and that was a refreshing break and Kyla loved seeing them.
We are just about finished up with the second round of chemo and now have to wait for her counts to recover and then we move on to the B cycle.
During our latest inpatient visit for the second round for chemo, psych visited and we finally got Kyla on meds to help with her anxiety and hopefully those will help make life a bit less difficult for her.
So far Kyla is doing great. She has her moments and really misses home, her friends and family but understands we have to stay here until all of her yuckies are gone from her body.