Kelsie's Song

15/11/2019

Kelsie had her MRI yesterday and I’m happy to report that the results are stable! This one she was also able to do this one unsedated, so yay! Next one should be in about 5 months.

18/05/2019

Today was NF Awareness day, so obviously we made a trip to Cleveland to see the NF Tower all lit up. No one tell Kelsie it’s the Terminal Tower, I’m letting her believe it’s called the NF Tower just for her 💙💚💙💚

09/03/2019

Kelsie’s settled in for the night, and doing ok. She was pretty good until they finished gluing the leads into her hair and messed up her dinner order. It went downhill from there. Zeljko’s staying with her tonight, my turn tomorrow.

They did say that if she goes 48-72 hours without any indication of seizure activity, that reduces the chances that what we’re seeing is a result of seizures. They also said she may be there a little longer or less depending on what the weekend brings.

Thank you for your messages, texts, and prayers today. It definitely made a long day better!

18/02/2019

Wow! It’s been a long time since I posted an update. Kelsie had a great MRI in October and we just made sure we enjoyed the holidays and being chemo free!

A couple weeks ago Kelsie started having some memory loss. It had happened a couple times before bells went off. At the time I realized something was off, she started having some issues at school. Luckily we had an appointment already scheduled to see oncology. After discussing with them, the decision to have an MRI sooner rather than at her later scheduled date was made. Results from that showed her tumors were stable.

From there, we made an appointment to have some other testing done, and luck was on our side that there was a cancellation, and we were able to get in just 3 days after the MRI. Testing there showed that her memory was about the same as it had been in August, which is great! However, these tests wouldn’t really show what we’re seeing. A second look at her MRI shows an area of concern. Long story short, they believe that Kelsie may be experiencing some seizures. She is scheduled for a 3 day in patient EEG in a couple weeks. It could be something easily fixed with meds or it could be something more complicated. We should (hopefully) have results towards the end of March.

At this point Kelsie doesn’t know she’s having memory loss, and we aren’t telling her. We just don’t feel it would help her to know that at this time. The other kids also don’t know any of this, and none of them know about the EEG yet.

We’d appreciate positive thoughts and prayers going into the next couple of weeks. We’re still trying to digest all of this and continue to keep things as normal as possible.

Thanks 💚💙

14/09/2018

Kelsie had a clinic appt today for a port flush and check up for her upcoming MRI. Everything looks good, and we’re all set for the MRI next month.

We took this picture when we left because it’ll be our last time on this floor, in this office. Cleveland Clinic is opening their new Cleveland Clinic Children’s Outpatient Center. And while it’s new and different, and I’m sure it’ll be great, leaving today made me a bit sad. You see, the first time we came here, it was an overwhelming, scary place that talked of chemotherapy, pokes, scans, and other scary things. I prayed we’d never have to step out of the elevator into that office again. As we all know, that didn’t happen. But what did happen was this place, this office, these people, became a place we’ll never forget. I hated going to this place for so long, but I loved the people we saw there. It’s hard to explain I guess. They helped Kelsie, and the rest of us navigate through some really scary times. We’ve cried here, we’ve laughed here, we’ve made memories here, maybe not normal kid memories, but memories nonetheless. For a while, we saw these halls and rooms more than we saw friends. I’m sure the new place will be great, with all if it’s new gadgets and the new building smell, but this place will always be special to me. Its where Kelsie spent a lot of time growing up, and learning that sometimes life throws you curve balls, but you keep going. You keep putting one foot in front of the other, and you keep going. I’m sure I learned a little of that too. Thanks S20, for all you’ve taught us, for all you’ve been, and for all the friends and memories made in your halls and rooms.

13/07/2018

Kelsie had her MRI yesterday. We left our house at 6:30am and pulled in the driveway at 6:15pm. It was a loonngg day.

The results show that her tumors are stable, so yay 🎉 The chiasm shows more enhancement this time, but we’ll keep an eye on it for now.

Once we got home, I actually read the report and it mentioned a neurofibroma, or a tumor, in the soft tissue. I called today for clarification since they didn’t tell us that when we saw the dr. yesterday. The tumor is in the soft tissue of her neck. As a matter of fact, we can feel it. Kelsie thinks it’s cool she can feel it. It’s not causing any pain or issues right now. We’re not sure at this point if it’s new or if it’s been mentioned in a previous report. Either way, the plan is just to watch it for now.

The next MRI is going to be scheduled in October, so until then, we’ll be thankful for 3 more months chemo free!

05/04/2018

MRI Day...with stable results! 🎉🎉

28/02/2018

Children's Tumor Foundation is a non-profit medical foundation dedicated to improving the health and well being of individuals and families affected by the neurofibromatosis.

09/01/2018

MRI day for this sweet girl. Happy to report that everything is STABLE!! 🎉🎉

Her port is staying in for now. We've never made it 9 months with clear scans, so until we do, we're not touching that port 😉

13/10/2017

We checked in at the clinic at 10am and left at 5, it was a loooong day! For starters, Kelsies MRI was pushed back an hour and a half. I was pretty frustrated, that meant my whole day was messed up! To kill time we went back to S20 (oncology floor) and joined their Marvel party! I'm so glad we did! Kelsie made the cutest cape ever! (Fox 8 was at the clinic today and did a story on the Marvel party, so you can check it out!) Her MRI's normally last 45-60 minutes, so when she hit the 90 minute mark today I started getting nervous. At almost the 2 hour mark I went looking to see what was taking so long. Apparently Kelsie started coughing while she was in there, and they couldn't get her settled down. She ended up getting 2 breathing treatments while she was sedated. They also switched a med because of the coughing. When I got back to her she was starting to wake up and it wasn't pretty. Normally she's happy when she wakes up. Today she was whining in her sleep, and once she was awake, she was crying with a headache. Kelsies not one to take medicine, so if she's asking for it, it out know she doesn't feel good! Thankfully the Tylenol helped! Apparently a headache is a side effect of the new med they gave her today.

So by the time we made it back up to S20, no one had read her results yet. Her oncologist was in a meeting and said we'd get a call tomorrow with results.

Tonight the phone rang at 10 and it was Kelsies oncologist. She said she was sorry to call so late but she heard our day was bad and wanted to end it with good news, Kelsies scans are STABLE!! I'm so thankful for stable scans and great oncologists!

07/10/2017

Kelsies had a big week. So thankful for all of the support!

BRIMFIELD, Ohio-- You don't necessarily have to be big and strong to be brave. But brave is exactly how to describe 7-year-old Kelsie Matijakovic, a second-grade student at Brimfield Elementary School in Portage County. Classmates are saluting her courage as she wages battle against a rare genetic d...