Harrison’s Story

Site created on March 20, 2020

Harrison Jerome Limbeck has already had a challenging journey in his short life. He was born on January 17, 2020 at the U of M under high risk circumstances, 3 weeks early, with fluid in his lungs. After a week in the NICU we were thrilled to finally able to bring him home and settle into our new life with our sweet boy. After a couple of weeks Taylor noticed that Harrison didn't have as much range of motion in his left hip as he did in his right so we brought it up at our next appointment with the pediatrician. He referred us to Gillette orthopedics just to be safe, since Harrison was breach for so long he thought there might be some muscular issues needing attention. 

Once at Gillette, they noticed a small lump above his left hip. We had an ultrasound done and the radiologist showed us a dark, round mass by his hip socket which was causing the bone to be in the cup pretty shallow but it wasn't dislocated so there wasn't much concern in that regard. However, we had to find out what this mass was. They referred us back to the U of M where he was delivered, to an orthopedic surgeon who would then do an MRI and biopsy on the tissue to see what we were dealing with. Harrison had to be put under for the MRI so the hope was to remove the mass at the same time regardless of if it was benign or not, if possible, so that he only had to be under anesthesia once. While doing the biopsy, the surgeon realized that the mass is in fact a tumor, and that it is deep inside of a very important group of gluteal muscles that could effect how Harrison walks someday. The decision was made to hold off on removal until getting the biopsy results back, so as not to do any unnecessary damage if the tumor was benign. 

We waited over a week to get the results and on March 17th, Harrison's 2 month birthday, we got the call that every parent dreads. Harrison was diagnosed with a very rare form of cancer called infantile fibrosarcoma that presented itself in a quickly growing tumor, which is currently a little bigger than a golf ball. The prognosis is good because it hasn't metastasized and it hasn't spread to the bone but we have to act quickly to make sure this doesn't happen and that it doesn't get any bigger. The plan is to shrink the tumor using oral meds or chemotherapy, to about half of its current size, and then remove it surgically. We have a long road ahead and we are ready to do whatever it takes to get our little boy through this. We are so thankful for our friends and family who have offered their support. Our hearts are hurting but they are also full from the love being sent our way by so many people. Harrison is a lucky little boy to have such a big, caring army of people behind him. We can't wait to tell him how everyone came together to get him through this battle someday.


Update: After much more research was done on Harrison's tumor cells, it was found that the cancer he had was actually infantile spindle cell rhabdomyosarcoma. He ended up undergoing several months of weekly chemotherapy treatments, which were administered via a Hickman catheter in his chest, until that became infected and then it was done through a picc line in his arm. Halfway through his 22 weeks of chemo, the tumor was removed along with two major gluteal muscle groups and some bone. The margins from that area came back positive so he had to have one last surgery to remove more tissue. Harrison was declared cancer-free and completed his treatment just before Christmas of 2020. 

https://www.gofundme.com/f/hearts-out-for-harrison

Newest Update

July 11, 2023

Journal entry by Melissa Limbeck —

Time for a quick update! 

On Wed. June 28th Harrison had his annual visit with his orthopedic surgeon, who did his hip dysplasia surgery over two years ago. It's crazy how time flies! Dr. Cooper reviewed his xrays with us and said that all looks great! His hip socket is fully developed how it's supposed to be and you can barely see where they cut through his femur to put it back together. His legs are the same length, which is also amazing, and he doesn't foresee us needing to do any further corrective surgeries in the future! He even gave us the unofficial go-ahead for bounce houses and trampolines as Harrison has an equal chance of getting injured as any other kid and his hip is fully able to withstand the impact. 

We also had our 6-month hip MRI and annual lung CT on the oncology side of things yesterday which is always a long and emotional day for the three of us. We received only good news from his doctors at that appointment as well. No signs of cancer anywhere and his wake-up from anesthesia was MUCH better this time as they changed up the drugs they gave him a little and brought him out of sedation much slower. He was still a bit crabby, but nothing like last time. Now we can put it all out of sight and out of mind for another 6 months. It sounds like we will have to keep doing the bi-annual cancer scans until he is 5 years cancer-free and then we can drop down to once a year.

That's pretty much it! We have just been enjoying our Summer with family camping trips in our new camper on the weekends and working hard during the week while Harrison is at school. Taylor is still a wheelchair and mobility assistive technology professional and I am still working from home as a pet supply distributor marketing manager. Harrison is in the process of transitioning from Early Preschool to Pre-K and his teachers all comment on what a funny, smart kid he is. Never a dull day with him! After everything he's been through, it hasn't slowed him down one bit.

We hope all of our friends and family are having a great Summer and that we'll get to run into you somewhere along the way soon!

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