Mackenzie’s Story

Site created on April 15, 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. 

Newest Update

Journal entry by Courtney Clyde

Happy Friday! 

Kenz has definitely been living her best life lately. 😍 After some not so fun stuff at the hospital (more on that later), Mackenzie was lucky enough to go back to her second (Disney will always be first 😉) most favorite place on Earth: American Girl. We took a thank you card to the wonderful personal shopper who helped Mackenzie the last time we were there, as well as enjoyed some lunch with friends. Mackenzie also did a fantastic job helping me drop off Women for MACC's Christmas in July gifts to the hospital. THANK YOU so much for helping our team with this; it really gave a lot of blessings to some different kids having a hard time right now. We have also been starting to grow our own pumpkins in hope they will be ready for some fun outside decor when the weather changes! (Am I the only one who did not know that pumpkin plants are prickly!? Pulling weeds around those suckers HURTS! LoL) And finally, we have started to talk birthday plans. Can I please tell you how incredibly blessed we feel to be able to be planning another birthday with Kenz!? And the BIG 10!? You truly cannot fully appreciate how special a birthday is until you are no longer guaranteed another. My girlfriend Alicia had some special pictures made of Mackenzie imagining herself in Paris, and these are serving as our inspiration for decor. We know with COVID it will be something small in terms of guests, but I have a feeling we will be over the top in celebrating with love. (I attached some pictures of these fun adventures to this post)

Monday we had an appointment at MACC to flush Mackenzie's port, check her counts to make sure they are high enough to begin this chemo cycle, as well as just do a general check-in for some different side effects she is experiencing. Sometimes having conversations about side effects can be challenging. Because Mackenzie had radiation and chemotherapy two years ago, she is definitely at risk to be experiencing long-term side effects from that treatment. Obviously, she is on a chemotherapy now, which can have its own wonderful symptoms, as well as lesions in her brain which can be the cause of different issues. Can I please tell you how much I highly respect our medical team being able to keep all of this straight!? Kenz has been having some pretty uncomfortable stomach issues daily, as well as very mild head pain. We are working on figuring out the cause of some of this, doing some different testing as well as changing up medications to hopefully get this solved for her. While Monday her platelets were too low, yesterday they had come up just enough to meet the threshold for starting chemo. Yay! It seems kinda like a paradox, that we are excited to be able to pump the poison that is chemotherapy into Kenz; however, this is literally the only thing holding these tumors at bay. I think for a lot of cancer parents, when we are cleared to begin the next cycle of chemo, it kinda gives a little sigh of relief; mentally it feels that we are back in the fight and swinging with everything we have against those cancer cells. 

When we met with Mackenzie's team Monday and talked about some of the different symptoms she is currently having, it was discussed by both her team and I that she is possibly experiencing internal anxiety and some of the symptoms she has are physical manifestations of the anxiety. I felt this was such a great conversation we had, and I love that our team takes the time to discuss the importance of this topic with our kiddos; I honestly don't feel that the topic of mental health of our pediatric cancer patients is discussed as much as it should be when we think about awareness conversations that are had around the topic of pediatric cancer. The focus is always, first and foremost, on just getting our kids to survive, with hopefully the least amount of long-term physical damage as possible, and don't get me wrong, that is 100% what we all want. But to try and reach that goal, our kids experience serious trauma, both physically and emotionally. I attached a picture to this post of the port needle that all cancer patients are accessed with each time for chemotherapy, port flushes, transfusions, etc., as well as a video of what an ommaya tap procedure is (this is commonly done to brain tumor patients multiple times a week, multiple weeks a month, to deliver chemo directly into the CSF fluid/brain). To give context, Mackenzie was poked with that needle 5x alone on Monday as they tried to access her port, plus another arm blood draw Thursday to check counts. And the ommaya procedure was part of her treatment protocol from November-end of April when we decided she had had enough. Our cancer kiddos experience talking to their friends in Heaven, who were just fighting the same cancer they were last week. Losing hair multiple times, missing school for months and months, missing friends...all of these different factors understandably take a toll on our sweet fighters. We are hopefully taking some steps to help support Kenz more in this area as she battles on.  

As we head into the weekend, I would like to ask you to take a second and pray, or send comforting thoughts, or whatever you believe in, to our MACC families and the medical teams taking care of them. Anyone who has watched a loved one or friend fight cancer knows how incredibly devastating it is. Recently our local MACC family has suffered a lot of pain. We have had several kiddos pass, many of us are on palliative or hospice care, and there has been an increase in newly diagnosed. We would love if you would quietly take a second this weekend and stand with us in sending love and peace to all of these families and those taking care of them.  “You beat cancer by how you live, why you live and in the manner in which you live.” Stuart Scott 
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