Apr 17, 2020 Latest post:
Jul 17, 2020
Mackenzie "Kenzie" Clyde was diagnosed with metastatic large-cell/anaplastic medulloblastoma with MYC-C amplification (brain cancer) in May of 2018. She underwent tumor removal surgery for the main tumor site on her cerebellum, which unfortunately caused her to develop posterior fossa syndrome. Once recovered from surgery, Mackenzie began 31 sessions of cranial-spine radiation at Froedert Medical Center in Milwaukee; she bravely completed these without sedation while her mom read Junie B. Jones to her via a microphone system. Kenz then went on to do seven months of intensive chemotherapy at the MACC Fund inside Children's Wisconsin. While receiving treatment for her cancer, Mackenzie spent time weekly at CHW doing physical and occupational therapy. Her posterior fossa syndrome initially left her without the ability to walk, which she quickly regained, though with an ataxic gait, as well as her dominant side switched from right to left; all of the tasks she used to do with her right hand, writing, brushing teeth, opening a lid, holding markers, she now needed to learn to do with her left hand. At the end of her cancer treatment in March of 2019, Mackenzie had stable disease, and we all prayed her tumor sites were dead clumps of tissue that would never give us grief again.
Sadly, just six months after finishing treatment, on a routine scan in October of 2019, we learned Mackenzie's brain cancer had returned, and the doctors were now certain this disease would ultimately be fatal to her. When Kenzie's cancer came back, it had returned as leptomeningeal spread, basically meaning her cancer is spreading via her CSF fluid and dropping tumor cells along the lining of her brain. Because she received so much radiation upfront, at such a young age, and not very long ago, all these factors were taken into account when it was told to us that radiation this time around would not be an option. It was heartbreaking to have to have her port placed once again, along with an ommaya reservoir placed in her head. She began a protocol called MEMMAT, which delivers medication to her body in three ways: directly into her head via the ommaya reservoir (yep, pretty much a "brain poke"), through her port in her chest, and swallowing horse-size chemo pills. The goal of this treatment plan was to put up a fight against Mackenzie's tumors, slowing them down from spreading to other parts of her brain or back into her spine, where her original disease was also found. We completed this treatment plan for several months, having some pretty good results for the first several months. But those results came at a price, and ultimately were not sustained. Last month, in mid-March, Mackenzie's MRI showed more leptomeningeal disease; sometimes this is called "secondary relapse" or "disease progression." For now, we are continuing to soldier on, fighting this uphill battle each day, with a smile, and being thankful for every precious moment we have together.