2022 Buddies

Addison was born with Myelomeningocele Spina Bifida. Myelomeningocele is the most serious form of Spina Bifida. Addison had back closure surgery at 1 day old and she also had a VP shunt placed that same day. She spent 13 days in the NICU at M Health Fairview Masonic Children's Hospital. Since then Addison has had 21 surgeries with 4 of them being her VP shunt having to be replaced and 3 spinal cord detethering surgeries. Addison wears ankle foot orthoses and uses forearm crutches to help her walk. It has been very difficult and scary having to witness Addison go through all of this in her 10 years of life but we are so grateful for all of Addison’s wonderful Doctors at M Health Fairview Masonic Children's Hospital. Addison is such a brave, happy, active little girl who always has a smile on her face even though life isn’t always easy for her! Addison is so excited to be Braxton’s Buddy for the Minnesota Vikings game! 

Hi I’m AJ.  I was born in Haiti then was adopted and moved to MN. When I arrived the doctors at the U of M diagnosed me with Crouzons Syndrome, a genetic disorder.  I‘ve had a lot of surgeries to help my disorder.  Even though my disorder will never go away, the surgeries help me live a better life.

Thank you M Health Fairview Masonic Children's Hospital for helping me and other children live a better life.

Ava was diagnosed with JMML a very rare form of Leukemia in 2015. She received a bone morrow transplant to battle this disease. Her brother, TJ, was her donor! Thanks to the amazing doctors at the Masonic Children's Hospital, Ava is doing fantastic today! 

Hi, I'm Grant. I was born with a rare liver disease called biliary atresia. I spent a lot of the first 2 years of my life in the hospital and eventually had a life saving liver transplant. My new liver came from a 4 year old girl named Addison from Arizona who passed away from juvenile diabetes. My family is now very close with my liver donor's family. There have been several bumps in the road for me but the staff at M Health Fairview Masonic Children's Hospital has been there for me every step of the way and I wouldn't be here today without them. Thank you!

In the summer of 2018, 5 weeks earlier than expected, Isla made her mark at Masonic Children’s Hospital. Isla’s life was saved when it was discovered that the airways in her nose were blocked and she was unable to breath on her own. The blockage has since been repaired but it was a sign of more surgeries and therapies to come along with a diagnosis of profound hearing loss. Isla’s eager entrance is a sign of how she attacks each day and the challenges she has overcome and continues to tackle. Her ambitions have always been slightly out of reach from what she is physically able to do but her spunky attitude has and will continue to take her to the end zone.

Thanks to the NICU and her multidisciplinary team at Masonic and the Minnesota ASL community, we have never felt alone on our journey of unknowns.

Keep reaching, Isla!

Liam was first diagnosed with Juvenile Idiopathic Arthritis when he was just two years old.  Fortunately it was a quick diagnosis by his rheumatologist at M Health Fairview Masonic Children's Hospital, which led to a treatment plan that was quickly started.  He had so many joints involved that he was unable to walk or use his hands.  Liam's rheumatologist has monitored him for the last 6 years making adjustments to his medications as needed to help stop the disease from progressing and further damaging his joints.  We are so very grateful to the care team in the rheumatology department.  Under their care Liam is able to lead a full life as a very active 8 year old playing hockey, lacrosse, flag football, and all of the stuff in between that an 8 year old loves to do.  

It all started in late 2013. Colt was your typical 3 year old. He loved to play, run, talk – all of the stuff most 3 year olds do. However, he started to develop a pain in his leg. It really only seemed to occur when he was in his car seat. At first, I thought he was sitting weird – after all, he did have a half hour drive to and from daycare each morning, so he likely just had a pinched nerve or something. But when this pain continued on for a few months, it was time to see the doctor. 

Colt was looked over, labs were drawn, physical tests were done – everything looked fine. The doctor said that if the pain continued, to bring him back in. So, when the pain was still happening a few months later, we went back. This time, his doctor referred him to a specialist at Children’s Hospital. When we saw that doctor, he did another x-ray and felt very strongly that Colt should have an MRI. 

On May 16, 2014, the MRI revealed that Colt had a mass – the size of a softball - growing in his abdomen. It appeared to have started in his spine, and grew into the right side of his abdomen. The doctors determined that this was Neuroblastoma – a rare form of childhood cancer. They wanted to start treatment ASAP, but also told us that they would send a sample of his tumor to a doctor in California who specialized in Neuroblastoma. This doctor could determine of Colt’s cancer was an even more rare form of neuroblastoma – ganglio-neuroblastoma – in which the cancer is resistant to chemotherapy. They said it was extremely rare that this would be the case, but they wanted to make sure. It would take a few weeks to get the answers from the doctor in California, so in the meantime, they’d start Colt on the chemotherapy. 

So, we did. He spent 9 days in the hospital, receiving a bone marrow biopsy (which was negative for cancer) as well as his first round of chemo. He was then sent to the U of M Children’s Masonic Hospital to have his stem cells harvested in case they could or would need to be used at a later time. 

After a few weeks, the results from California came back – Colt in fact DID have the rare form of Neuroblastoma, the Ganglio-Neuroblastoma. We were told chemotherapy would very likely do absolutely nothing to his tumor, and surgery would be the only option. However, his doctor wanted to try chemo anyways, just on the off chance that it might do something. The smaller the tumor could get, the better the outcome would be – especially considering it was a softball stuck inside of the tummy of a 3-year old. So, Colt continued on with 4 more rounds of chemotherapy – and, the doctor was right. It didn’t do anything to the tumor. 

In early October of 2014, Colt endured a 9-hour surgery to remove the tumor from his abdomen. He was in the hospital for a week after, and then got to go home for a week. He then had to go back to the hospital for a second surgery, where they removed the vertebrate from the lower part of his spine, scraped out the cancer, and put the vertebrate back in place with a wire mesh. This surgery was 3 ½ hours long, but it worked! All that remained was what they call “dead cancer residual” - meaning, there are still some microscopic cancer cells that remain, but they are dead. 

The day after Thanksgiving 2014, Colt and his mom had to go to Chicago where Colt began a 4-week long 5-days a week regime of proton beam radiation therapy. This special radiation focuses specifically on the areas that you want to receive radiation, and does not hit other vital organs in the body that don’t need radiation. At this time, Chicago was the closest place that had the treatment. So Colt and his mom were there until two days before Christmas, while his dad and brother stayed home in Minnesota. They were 

able to facetime each other every day, but it was difficult to be apart. This was the last of Colt’s cancer treatments, though! 

During his 9-hour surgery, they did have to cut a major muscle in his hip-flexor which makes it difficult for Colt to walk and run normally. He wears leg braces to guide his walking and to help prevent him from falling. He has also developed scoliosis because of his walking. He receives PT twice a week to help correct some of this, even though most of it is now Colt's regular life. 

He has now been treatment-free for almost 8 years! He goes back for check-ups once a year at the “Long Term Survivors Clinic” at Childrens. His Stem Cells are still stored at the U of M since they were not needed! It was quite the journey, but he is our warrior – our Hero! 

Today (November 12) is Colt’s 12th Birthday! He loves school and making friends. Math is one of his favorite subjects. He’s got the kindest heart of any kid you’ll ever meet. He loves watching YouTube and learning new information from it! He also enjoys hunting – recently, he’s gotten a deer, a black bear and a turkey. He also enjoys playing baseball and wrestling.

Brock was born with a rare genetic disease called adrenoleukodystrophy (ALD). At the age of 5, Brock developed cerebral ALD, which is a life-threatening form of ALD. In 2019, he received a successful bone marrow transplant at M Health Fairview Masonic Children’s Hospital. Brock still has ALD and he also has adrenal insufficiency. He will continue to receive lifelong care at the hospital for monitoring purposes. Dr. Troy Lund is Brock's BMT doctor. Brock, his parents, and other Minnesota ALD families helped found the non-profit, X out ALD, which has raised $500,000 for Dr. Lund's research. Because of Dr. Lund and the staff at M Health Fairview Masonic Children's Hospital, Brock is now 9 years old, doing excellent in school, loves soccer, and you can catch him doing the Griddy on most Sundays. 

Harper was diagnosed with Acute Lymphoblastic Leukemia (ALL) on April 1st, 2020 at the age of 5. This came after 6 weeks of unexplained fevers, after which we decided to take Harper to MHealth Fairview Masonic Children’s Hospital. This turned out to be the best decision we could have made. Within a week of our first appointment, we were able to get a diagnosis. After Harper’s diagnosis on April 1st, the team at Masonic started her treatment on April 3rd, which is when Harper’s Journey began. 

Harper has tackled this journey head on. She has handled much of it with more determination and strength than you could imagine. Harper has also been able to keep her loving and happy personality through it all and has never stopped smiling and having fun! We owe a big part of this to not only who Harper is, at such a young age, but the team at Masonic for making her feel like one of their own from Day 1. Harper loves to see the team at Masonic and feels so comfortable heading in for appointments. 

Harper loves to play soccer, cards, chess, and many other games. She also loves to be with friends and family, especially her younger sister, Faelyn. The bond that these two have developed throughout this journey, has been one of the best things to witness. 

Harper is an extremely loving, joyful, smart, and talented child! Her love, and overall joy for life has never wavered throughout her journey, and continues to shine through in everything that she does!