I've been following the journey of this beautiful princess for about 8 months. Kaylee was diagnosed with medulloblastoma in 2018. She had been off treatment since her brain scans showed NED in September 2019. She had a small spot in her spine though, thus it was not declared NED then. In early December, her MRI and LP tests in CHOP unfortunately showed there are cancer cells in brain and spine. They have planned a new treatment roadmap and she is proceeding with it at the moment.
Kaylee was having seizures afterwards of a flu shot last month and she got admitted to UPMC Children's Hospital of Pittsburgh. The seizure activity was under control and she was sent home. I'm happy that she spent Christmas with her family at home. She also celebrated her 11th birthday on 23rd December. She was admitted to CHOP a little after Christmas. She underwent a surgery on 30th December, had a brain port, called ommaya reservoir, placed in her brain. She will receive chemo through the port directly into the spinal fluid according to the new treatment plan. This is expected to control and even cure the disease. She develops headaches and seizures due to the spinal fluids on her brain. On 1st January, she began the new treatment plan and received the first chemo through the ommaya. On 6th she underwent another surgery for placing a drain and got removed the built-up fluid on her brain. She will have a third surgery on 12th tomorrow for placing a programmable shunt. The shunt will help remove the built-up fluid. The last MRI showed more spread of cancer in the brain but I am very positive about this new treatment procedure.
Kaylee is such a strong dedicated warrior; she handles exhausting symptoms, procedures and complications while she keeps smiling, dancing and even home-schooling. She loves dancing, she has very serious dancing skills. I hope she comes back to her dance classes as soon as possible. I like her drawing and watercolor works. Her favorite color is purple. She has a younger sister named Kenzie who is as beautiful as Kaylee. They have also a new tiny family member named Colin. I picked the picture below to share because it has so much value, energy and meaning. Kenzie's blue lips because of the lollipop she was enjoying. Kaylee welcomes Colin on her lap and wears a FAM shirt, reminding that she is an absolute trooper. Best sisters smiles together at the camera. They are best friends of each other. I love seeing them together in photos, it reminds me of the love that most people are not aware of and don't look for.
In one of the last posts, her momma Melissa wrote that Kaylee has got fear of dying and doesn't want to leave her. It is heart wrenching to read those lines, while putting myself in their shoes. Nowadays I try to understand various families and recently can't help but think of Klay and his family all the time. I wish more people tried to understand each other. Unfortunately, empathy is hard work and most people avoid it on purpose. [Cameron CD, Hutcherson CA, Ferguson AM, Scheffer JA, Hadjiandreou E, Inzlicht M. Empathy is hard work: People choose to avoid empathy because of its cognitive costs. J Exp Psychol Gen. 2019;148(6):962-976. doi:10.1037/xge0000595].
Kaylee, you have been giving an amazing fight and you will beat cancer again just like you have done it before. I believe in you.
UPMC and CHOP have e-card services that allows you to send cards to patients. Basically hospital prints the card you pick and delivers to the patient you address.I've sent some cards to Kaylee during her hospital stays. I hope she feels a bit better when she remembers she has a huge fan all the way from Norway.
I follow the updates about her on Fb: Caring for Kaylee.