Category Archives: Patient stories

3-year-old aspiring ballerina stays busy despite cancer

Lydia Fisher is in the maintenance phase of treatment.

Lydia Fisher is in the maintenance phase of treatment.

All Lydia Fisher talks about is ballet.

The 3-year-old girl probably will get to take ballet, adding to her already busy list of activities which includes swimming lessons and gymnastics – all normal things for a friendly, outgoing little girl.

“She’s just really an active 3-year-old. When you meet her on the street, you’d have no idea she’s undergoing chemotherapy,” her mother, Jane Fisher, said. “She’s such a trooper.”

Lydia 1Like most families, Lydia’s cancer diagnosis caught her parents, Jane and Jeremy Fisher, off guard.

“She was diagnosed with acute lymphoblastic leukemia (ALL) on her second birthday,“ Jane said. “She had been sick with fevers and aches for 14 days before our pediatrician said we should get worked up at Children’s Hospital. We were admitted, and a couple days later it was confirmed that Lydia had ALL after a bone marrow biopsy was completed. You never really think that you are going to be ‘that family.’ Like others, we’ve tried to face it head-on.”

Jane, who works at Children’s Hospital in another department, and her family always knew it was a wonderful place for families to be treated. But seeing it from the other side of the fence has been eye-opening for Lydia’s parents.

Subscribe to Mighty“The whole staff is amazing,” Jeremy said. “From the doctors on down to the housekeeping staff, everyone is so good at their jobs. Everyone stops to visit with us, support us and make sure we are doing well. Many of them aren’t even caring for Lydia. Everyone gets that same treatment; we appreciate it.”

Lydia is seen at the Minneapolis campus, and her primary oncologist is Kris Ann Schultz, MD. Lydia is in the maintenance phase of treatment. Her family anticipates she’ll complete treatment in September 2015.

“This past year, I think we’ve really settled into (cancer) just being part of our life and being part of our family,” Jane said. “We try not to make it be the center of everything. We try to make her childhood as normal as it can be.”

Leukemia hasn’t slowed energetic Ike

Ike Yarmon is in the maintenance phase of treatment, and his care team hopes he will finish treatment in July 2016.

Ike Yarmon is in the maintenance phase of treatment, and his care team hopes he will finish treatment in July 2016.

A child’s birthday should be fun and carefree. But just three days before Ike Yarmon turned 5 last year, his family got mind-blowing news: Ike had cancer.

At first, it seemed like Ike had a run-of-the-mill ear infection. Then, he developed a rash all over his body. It originally was thought to be a reaction to amoxicillin to treat his ear infection. During each visit, Ike’s pediatrician had his blood drawn, which indicated alarming white blood cell counts. It could be leukemia, his pediatrician said, but Ike didn’t have any other symptoms.

After continued declining white blood cell counts and a stubborn rash, his pediatrician recommended Ike’s parents, Chelsea and Chad Yarmon, take Ike to the emergency department at Children’s Hospitals and Clinics of Minnesota.

Ike’s lab results perplexed the emergency department staff. Due to the possibility of having a serious viral infection, Ike saw Children’s infectious disease specialists. Further blood tests didn’t reveal a virus or inflammatory disease. Three days later, Ike underwent a bone marrow aspiration, which showed Ike had B-ALL leukemia.

Subscribe to MightyIke’s diagnosis has been life-changing for his family. It has shown them the “true meaning of living,” given them more purpose and brought them closer, Chelsea said.

“We fight so these children no longer have to endure these horrible treatments and so that no parent ever has to hear the life-altering words of ‘your child has cancer,’ ” Chelsea said.

Ike is in the maintenance phase of treatment, and his care team hopes he will finish treatment in July 2016. While his family counts the days until treatment is over, it hasn’t kept him from playing hockey and baseball, being outside and playing with his sisters and spending time with his family. He’s full of energy.

“We feel incredibly lucky and blessed that, even though Ike has cancer, he was diagnosed with a highly curable form and is handling his treatments like a true champ,” Chelsea said. “We know that his prognosis could be in a much different place, and for that we are truly grateful.”

Wisconsin girl perseveres through cancer relapse

Reagan completed her initial treatment April 1.

Reagan Robertson, of Frederic, Wis., completed her initial treatment April 1.

Like most little girls, Reagan Robertson of Frederic, Wis., has a healthy list of her favorite things. Not surprisingly, Disney princesses and baby dolls rank high on her list. But you can also add dance parties, horses, puppies, kitties, fingernail polish and bike rides with her dad to that list.

A brave, sweet girl, Reagan already has been through a lot in her young life.

It was Oct. 17, 2013, when doctors first mentioned “leukemia” to her parents, Alison Lake and Allen Robertson. When a subsequent bone marrow biopsy didn’t confirm the disease, the Robertsons stayed in the hospital for eight days while the doctors tried to pinpoint her exact condition. Eventually, the Robertsons were sent home with “pre-leukemia” until Nov. 8, when acute myeloid leukemia was confirmed.

Subscribe to MightyReagan completed her initial treatment April 1 (four rounds of chemotherapy with each round averaging 25 days inpatient and 12 days at home). Then, on May 16, she relapsed. She had an additional two rounds of chemo. If these rounds of chemo put her into remission, she’ll be getting a bone marrow transplant, hopefully, this month.

Alison is appreciative of the care they receive from Dr. Jawhar Rawwas and the staff at Children’s.

“I feel like the oncology team cares for Reagan,” she said. “When she relapsed, they were upset for us. The doctors and nurses are very attentive and do a good job in every aspect of care.”

Reagan’s lengthy hospital stays have had an impact on her. Alison figures Reagan will be a nurse when she grows up since she regularly helps the nurses do vitals, does dressing changes on her stuffed animals and takes alcohol wipes and cleans the lines. She always helps flush her g-tube and even refers to herself as “baby nurse.”

Reagan is a fighter and up to the challenges ahead of her.

“When she’s feeling good and not in the hospital, she is an absolute joy to be around,” Alison said. “She’s so happy and smiling and funny. She can be a tad grumpy in the hospital and sometimes people don’t really get to see her true nature. She is our ‘Rea of Sunshine.’ ”

Elk River teen siblings share cancer stories

Siblings Aaron (left) and Abby Dwyer of Elk River were diagnosed with cancer four years apart.

Siblings Aaron (left) and Abby Dwyer of Elk River were diagnosed with cancer four years apart.

Abby Dwyer, who was featured at this year’s Pine Tree Apple Tennis Classic, is a wonderful young adult who faced cancer head-on after being diagnosed with Philadelphia chromosome positive ALL leukemia almost five years ago.

Abby has been off treatment for two years and is doing well after undergoing a double knee replacement when she was 14 because chemotherapy treatments destroyed her knees.

Abby, a sophomore at Elk River High School, where she plays the saxophone in the band, enjoys participating in pep rallies. She has one brother, Aaron, who later was diagnosed with cancer, and one sister, Allison. Her parents are Tim and Terri Dwyer.

“The staff at Children’s – Minneapolis have been amazing with her treatment,” Terri said. “It is because of Dr. Joanna Perkins, her primary doctor; Dr. Bruce Bostrom and many others that we have our Abby here today with us. Abby’s treatment was very intense for 20 months. We are so grateful for the support and care that the nurses in the hospital and in clinic have given to Abby.”

Abby’s favorite nurse at Children’s was Erin Ryan, RN, because she showed so much compassion to Abby during her difficult treatment. Abby is quick to note that there were many nurses that impacted her care and made her many nights in the hospital more bearable and fun.

Abby loves the outdoors, especially mountains, and to attend camps, which she has done three times this summer.

Spend time with Abby and you’ll see that she is a kind and independent person who loves to be around children. She’s always looking out for others and offering of herself with her servant’s heart. She loves to hang out with friends, play games and watch TV. Abby has an infectious laugh and positive attitude that follow her.

Abby wants to be a nurse or a child life specialist in the future as a way to give back to her community for all of the things that were given to her.

Subscribe to MightyAfter watching sister battle cancer, Aaron Dwyer faces fight of his own

Aaron Dwyer, who saw his sister, Abby, battle cancer, was diagnosed with stage 3 T-cell lymphoma on Dec. 13, 2013, four years after his sister’s cancer diagnosis.

Aaron has 1½ years of treatment remaining. In spite of it being a tough road, he has handled it well by trying to stay positive and keep his faith.

“The Children’s staff has been amazing to Aaron. They welcomed him in and have taken incredible care of him during his treatment,” his mother, Terri Dwyer, said. Aaron’s primary doctor, Joanna Perkins, MD, was there for Abby’s treatment, too. “Aaron has had a couple tough points in his treatment, but the staff stepped in and truly gave Aaron the support and encouragement he needed. We could not have made it through it all without the caring team at Children’s.”

The Elk River High School senior plays the trumpet in the band and two jazz bands.

When pressed, Aaron admitted that two nurses are his favorite. John is his favorite nurse at clinic because the two share many of the same interests, and Leah is his favorite nurse in the hospital because she always makes him laugh and they joke around, which makes his stays a bit more bearable.

Aaron wants to go into the banking as a career. He’s already had a taste of it at his job as a bank teller, and he enjoys it.

Outside of work and school, Aaron is busy. He likes to spend his free time cooking new and delicious recipes. He also enjoys hanging out with friends and playing games, riding four-wheelers, running and spending time at home. But that’s not all. He also enjoys playing piano, listening to country music, hunting, target practice, camping with his family and hiking.

Like his sisters, Abby and Allison, Aaron is a kind and giving person who always has a smile on his face. He’s a hard worker with a great attitude about life and a great sense of humor.

Cancer survivor, bone marrow recipient aspires to be doctor

Maddie Travers, a seventh-grader, lives in Scandia, Minn.

Maddie Travers, a seventh-grader, lives in Scandia, Minn.

Look up the words “tough,” “fighter” and “loved,” and wherever they intersect, there is sure to be a picture of Maddie Travers.

Maddie was diagnosed with ALL leukemia on Dec. 7, 2011. As her mother, Nikki, noted, “It was the worst day of our lives.”

Since that day, Maddie has battled to get to where she is now. She had two CNS relapses. At that point, her only option was a bone marrow transplant. But she had an infection and was admitted to the intensive care unit for 14 days over Christmas, with five of those days on life support. She had her transplant in April this year.


Maddie received a bone marrow transplant in April.

She did well at first but then came down with a series of infections. After 96 days in the hospital, Maddie was released to go home on IV antibiotics.

”We can’t wait to get back to all the wonderful people at Children’s. We miss them so much,” Nikki said. “Maddie is seen by Dr. Bruce Bostrom. He has been so wonderful to us throughout all of this. He texts me so I can ask him questions. Dr. Bostrom and Maddie’s favorite nurse, Liz, would come over to the hospital to see her even when she was on life support. Dr. Bostrom would text me when Maddie was really sick and let me know that he knew what was going on and that he was there if I needed him. That really meant so much to both of us.”

Today, Maddie and the Travers family are looking ahead. Maddie, a seventh-grader, lives in Scandia and will be home schooled as she continues to recover from her bone marrow transplant.

Maddie wants to be a doctor when she grows up due to her firsthand experience in hospitals and “never give up” attitude.

Boy battles brain tumor, congenital heart disease

Dylan Jones was born with tetralogy of Fallot, a problem with the heart’s structure that changes the normal flow of blood through the heart.

Dylan Jones was born with tetralogy of Fallot, a problem with the heart’s structure that changes the normal flow of blood through the heart.

To say the Jones family has had their share of devastation would be an understatement.

Dylan Jones was born with tetralogy of Fallot, a problem with the heart’s structure that changes the normal flow of blood through the heart. Eight years later, he was diagnosed with cancer.

In December 2013, Dylan became unresponsive at school in Illinois. He regained consciousness within a minute and was talking by the time school staff called his mother, Elizabeth Jones. He seemed OK, but everyone agreed that he needed to be seen by a doctor, so his mom drove him to a nearby emergency room.

Calm quickly turned into fear.

“It wasn’t until we got to the emergency room and they did a CT scan that it was all a shock to us,” Elizabeth said.

Dylan had a medulloblastoma, a fast-growing, high-grade brain tumor. He underwent surgery to remove the tumor, leaving him wheelchair bound and legally blind. After surgery, he was taken by air transport to Children’s Hospitals and Clinics of Minnesota to continue care close to extended family.

He underwent six weeks of radiation and chemotherapy. In April, he started another round of chemo that’s scheduled to end this month.

Subscribe to MightyDylan’s case is unique, and he requires a lot of attention when he’s hospitalized, Elizabeth said. But the nurses don’t mind. He’s such a charmer that they “fight” over him, she said.

“I can’t ask for better doctors. I can’t ask for better staff,” Elizabeth said.

Since starting chemotherapy, the hospital has become like a second home. The past four months have felt like the longest of Elizabeth’s life, she said.

Between his brain tumor and congenital heart disease, Dylan has suffered a lot in his short life.

“If I could take his place, I would. We fight, though. He’s a fighter,” Elizabeth said. “For all he has been through, he still continues to put a smile on his face, no matter what.”

Plymouth girl faces cancer with grace, determination

September is Childhood Cancer Awareness Month. (iStock photo / Getty Images)

September is Childhood Cancer Awareness Month. (iStock photo / Getty Images)

At first blush, Justice Jackson comes off as being shy and reserved. With more investigation, you quickly realize that it’s just her polite and respectful nature and it masks an accomplished young woman who recently fought cancer head-on.

Justice, 17, was diagnosed with a form of ovarian cancer in January. She underwent three sessions of chemotherapy, each session lasting about five days, under the care of her primary doctor, Kris Ann Schultz, MD. She currently has no additional chemo sessions planned.

Her mother, Regina Lester, talked about her daughter in loving terms.

“She really is quite amazing. She handled the whole thing a lot better than I did,” Regina said. “While I was emotional and scared, I never once saw Justice cry, never. She just put her head down and worked her way through all the scans, needles and chemo. At the same time, she continued to help around home and work. She just did it, and I am so proud of her.”

Her accomplishments aren’t limited to her role as a patient. She also is a top student and athlete and was able to maintain relative normalcy throughout her treatments. She attends Armstrong High School in Plymouth, where she participates in swimming.

There’s mutual admiration and love between this mother-daughter duo. That love extends to Children’s Hospitals and Clinics of Minnesota and the care they received there.

“We love Children’s and everything that they have done for us,” Regina said. “They took such good care of all of us. They explained everything and had a plan to get Justice through it. We are so thankful that Children’s came into our lives.”

Subscribe to MightyIn addition to Dr. Schultz, Justice noted one of her nurses, Tammy, as someone who was a positive influence on her.

“Tammy was great,” Justice said. “She took the time to play puzzles with me, encourage me and just be there when I had questions. I really appreciated that.”

It’s hard to say exactly what life has in store for Justice. No doubt, there are big things ahead for this outstanding young woman who her mother calls “incredibly strong, both physically and emotionally.” We hope the world is ready because Justice definitely is going to make it a better place.

Children’s, PPB registry help Mankato boy

A pediatric cancer diagnosis is terrifying for any family, most certainly a young family from Mankato and their infant, first-born son.

Braydon Greiner turns 2 this month.

Braydon Greiner turns 2 this month.

Braydon Greiner, the son of Breanne and Brandon Greiner, was diagnosed with type 1 pleuropulmonary blastoma (PPB) lung cancer March 28, 2013, at St. Mary’s Hospital in Rochester when doctors found a cystic tumor the size of a grapefruit growing on his right lung.

“When Braydon was diagnosed with cancer our world crashed down around us,” Breanne said. “Life as we knew it changed forever. We researched PPB on the Internet and found out just how rare it is.

“Luckily, Braydon’s doctors at the Mayo Clinic told us about the PPB registry. I emailed Dr. Yoav Messinger of Children’s Hospitals and Clinics of Minnesota and we met the following week to discuss the risks, possible outcomes, available treatment plans and his experiences with similar PPB cases. Finally, our questions could be answered.”

Braydon turns 2 this month. He receives a chest x-ray every three months and a CT scan every six months to monitor the two type 1r cysts that remain in his lung. If the cysts show growth, he will start a chemotherapy regimen and possibly have surgery to remove them.

“We could not be more pleased with the care Braydon has received from Dr. Messinger, Gretchen Williams and the staff at Children’s,” Breanne said. “The communication between Dr. Messinger and Braydon’s primary physician, Dr. Smentek, in Mankato is impeccable. With PPB being such a rare cancer, we find comfort knowing that Braydon is being cared for by the leaders of The International PPB Registry.”

Subscribe to MightyAn adorable bundle of energy who could melt your heart in seconds, Braydon loves to play catch with his dad and fetch with his puppies. He also loves to zoom his cars around the house. His favorite thing to do is go for bike rides to the park so he can go down the slide. He is true fighter and inspiration.

“I expected the PPB registry to be a research group that wanted to look over Braydon’s files and have access to his charts,” Breanne said. “But the PPB registry does so much more than that; it also brings PPB families together.  The PPB registry helped a young, frightened family feel assured that ‘everything will be OK.’ We truly can’t thank you enough.”

Boy, 6, overcomes rare form of lung cancer

Evan Ginter, 6, loves art, drawing and recess.

Evan Ginter, 6, loves art, drawing and recess.

Life was normal for the first seven months of Evan Ginter’s life. Then cancer changed everything.

Evan’s primary pediatrician noticed something was amiss during a routine checkup in December 2008. She noticed that Evan experienced shallow breathing. A subsequent chest X-ray showed a large, dark mass on his right lung, and Evan immediately was admitted to Children’s – Minneapolis.

Evan Ginter enjoys riding his bike.

Evan Ginter enjoys riding his bike.

After a series of events that included CT scans and surgery, Evan’s parents, Lindsay and Jeremy Ginter, learned on Jan. 12, 2009, that Evan had a rare form of lung cancer known as pleuropulmonary blastoma type 1r.

Gone are the days when Lindsay and Jeremy constantly had to worry about Evan. He had an annual checkup in June, when he had an X-ray. Not only was it clear, it was the first annual exam in which he didn’t need a CT scan, too – a huge milestone. He’ll continue to be monitored with X-rays for the next two or three years.

The Ginter family, which includes his brother, Edward, said they feel blessed for the specialized care Evan has received at Children’s. Not all families are as fortunate, Lindsay said.

Thanks to social media, Lindsay follows the stories of others with Evan’s diagnosis.

Evan Ginter“For those who aren’t in Children’s network and don’t have the access to the PPB registry, there are so many questions. They just don’t have the direction we had. Since day one, we had personal cell phone numbers of our oncologists,” she said. “It’s really hard to imagine it any other way, and my heart goes out to the families that don’t have those resources.”

Evan, now 6 and still quite a character, just finished kindergarten, where he flourished.

He loves art, drawing and recess. He might even be an engineer in the making.

“Both my husband and I are insurance and accounting people, so our brains don’t work that way. He’s turning out to be much more creative than we are,” Lindsay said. “So we don’t know where he gets it; it’s good.”

There’s no doubt Evan has been through a lot in his short life. We celebrate alongside the Ginter family as Evan looks forward to starting first grade this fall.

Mother shares story of her hero

By Courtney Kile

When you think of a hero, chances are it’s someone who has helped you or inspired you – your parents, a teacher or a religious figure. My hero is about 3 feet tall, likes cheesy pizza and is obsessed with the PAW Patrol. He’s my son.

I married my husband, Robert, in 2009. Before the ink was dry on our marriage license, we were ready to make our duo a trio. Every month I’d take a pregnancy test, only to be let down. After nearly two years of infertility and loss, we were thrilled to find out I was pregnant! My dream was coming true.

Courtney Kile was pregnant with her son, Sullivan, in 2011.

Courtney Kile was pregnant with her son, Sullivan, in 2011.

At 20 weeks, we found out we were having a boy. His name would be Sullivan James, “Sully” for short. He was healthy, and everything looked great. Pregnancy was tough, and after being diagnosed with pre-ecclampsia at 37 weeks, doctors decided it was time for Sully to arrive.

I was prepped for surgery at our hospital in Duluth, Minn. On Nov. 14, 2011, Sullivan James Kile came screaming into the world at 6 pounds, 8 ounces; he was perfect.

Sullivan "Sully" James Kile was born Nov. 14, 2011.

Sullivan “Sully” James Kile was born Nov. 14, 2011.

When I finally got to see him, he was in the level-two nursery with an IV and oxygen cannula. Robert and I were told that because Sully was early, he just had to “turn the corner,” and that’s why he had low oxygen saturations.

Very early next morning, I surprised to see Sully receiving an echocardiogram. Once the test was finished, the nurse told me the doctor was on the phone. That’s when my world came crashing down.

“Courtney, the Life Flight team from Children’s – Minneapolis is on their way,” he said. “They will be there in five minutes. I think Sully has something wrong with his heart and he is going to need surgery. You should probably call your husband.”

It was like being hit by a wrecking ball. All I remember was barely being able to dial my husband’s number and screaming at him to get to the hospital.

I went back and held Sully. I was rocking him in a chair when Robert arrived, his eyes red-rimmed from crying. Everything was a blur. As the life flight team updated paperwork, the nurse at our local hospital turned to us and said, “Why don’t we take a few pictures, ya know, just in case.”

Just in case? Just in case of what? This was not how this was supposed to go. We were in shock. We took a picture together and then Sully was taken to another hospital a mile away to a neonatal intensive care unit (NICU). His umbilical cord chunk had been removed and replaced with a central line IV. He was given prostaglandins to help his heart function properly.

Shortly after his birth, Sully had to be flown from Duluth to Children's – Minneapolis.

Shortly after his birth, Sully had to be flown from Duluth to Children’s – Minneapolis.

While I was signing releases for the transport, Robert looked at me and said, “I have only held him twice.” The flight nurse from Children’s overheard him and picked up Sully and gave him to Robert for a hug. It’s overwhelming to be a new dad, and after being thrown into a situation like this, it was comforting for Robert to have a moment with his new baby boy. Sully was taken to the airport, and Robert and I set off for the excruciating two-hour drive to Minneapolis.

Shortly after we arrived at Children’s, the cardiologists gave us our answer: Sully had pulmonary atresia with tetralogy of Fallot. When a baby is in utero, the ductus pumps the oxygenated blood to the lungs. Once a baby is born, the ductus closes and the pulmonary valve takes over. Sully’s pulmonary valve was covered in tissue and couldn’t open. When his ductus started to close, he wasn’t getting enough oxygenated blood to his lungs. The prostaglandins they gave him in Duluth were to keep the ductus open. Sullivan was scheduled for surgery the next morning. He was too young for a valve, so they were going to put in a shunt to temporarily pump the blood properly until he was old enough for a valve placement.

Subscribe to MightyWe were transferred to the Cardiovascular Care Center (CVCC). Sully was placed in a huge bed, with wires everywhere; I just wanted to hold him.

As I cried to myself, his amazing nurse looked and me and said, “Do you want to give him a quick snuggle?” I nodded and she expertly picked him up ­– wires, tubes and all – and put him in my arms. It was important to us to have those special moments where we could be parents in the midst of all the chaos.

The next morning, Sully was sedated and prepped for surgery. To say we were scared would be an understatement. We gathered around him and said a prayer. Then they wheeled him away. Waiting for him to get out of surgery was hard, but a social worker repeatedly checked on us, making sure we were OK. Just as I was about to crack under pressure, Sully’s surgeon, Dr. Frank Moga, came and told me that everything went perfectly. I calmly walked to the bathroom and lost it. Relief washed over me.

Sully had heart surgery at Children's.

Sully had heart surgery at Children’s.

We were told that it takes most children 10 days to two weeks to leave the hospital after surgery because they have to learn to eat. Sully shocked doctors by learning to eat immediately. They were impressed by how quickly he was healing. Six days after open heart surgery at 3 days old, we got to take our boy home the day before Thanksgiving.

Six days after open heart surgery at 3 days old, Sully went home the day before Thanksgiving in 2011.

Six days after open heart surgery at 3 days old, Sully went home the day before Thanksgiving in 2011.

We planned how it was going to be when we brought Sully home, but nothing prepared us for our new reality of medicine, an oximeter and scale. I was a germaphobe, coating everyone in hand sanitizer. We were glad to be home, but there was a dark cloud looming knowing that Sully would need a total repair surgery for his valve in the next few months. Luckily, his team at Children’s calmly handled my anxiety and answered all of my late-night phone calls and emails. Every follow-up appointment and conversation brought hope and confidence. The staff at Children’s taught me how to advocate for my son and made me feel that I had a voice. Whenever I would second guess myself, I would remember the surgeon telling me, “We see children every day, but you see yours every day.”

At 5 months old, Sully had to have a second surgery.

Sully appears to be waving at the camera in this photo.

When he was 5 months old, Sully’s cardiologist, Dr. Marko Vezmar, told us it was time for surgery No. 2, which would take place exactly 6 months after his first surgery. The anxiety returned. My saving grace was that I knew we were coming back to a safe place.

Sully Kile

At 5 months old, Sully had to have a second surgery.

As hard as the first surgery was, the second one was far worse. We knew him now. We knew his personality. But once again, the team worked miracles. After eight days on the CVCC, with constant love and support from Sully’s care team, we were sent home.

After his second surgery, Sully was ready to go home again.

After his second surgery, Sully was ready to go home again.

We pulled away from Children’s, and I cried. Six months of living in uncertainty and limbo were over. No more oximeter, no more scales, no more meds; it was done. We could be a normal family– at least our own version of “normal.”

Today, Sully is an active 2½-year-old with shining blue eyes and a heartbreaker smile. He spells his name, likes to sing Zac Brown Band songs and turns his nose up at broccoli. He seems like your average toddler, but Sully is a warrior.

Sully celebrates his second birthday with a cupcake.

Sully celebrates his second birthday with a cupcake.

Sully was destined to be ours and show everyone what a fighter looks like. He‘s the definition of miracle and hero. He’s my best friend, and he’s here because of Children’s. I’m thankful to everyone at Children’s, from the nurses and surgeons who were by his side, to the cafeteria worker who remembered me every morning – they all made those tough days a little brighter.

Sully’s strength has inspired us and others. Because of the support we received from Children’s, Robert and I knew we had to help our fellow heart families and heart warriors. We started a nonprofit for cardiac families in Minnesota called Project Heart to Heart. We’ve been able to help other families and made lifelong friends.

It’s not the norm for most, I guess, but this is our world. I wouldn’t change a thing. I’m the mom of a miracle.

Picture10Many people never get to meet their hero; I gave birth to mine.