Jr. Warriors

Junior Warriors are the kids that JR Hearts supports. These warriors face many medical challenges, and we are proud to walk alongside them and their families, if for only a brief moment in their journey.

 

Meet Jillian.

 

 

 

 

 

 

 

Our beautiful, sweet, funny little girl has never had an easy road. She was born with Torticollis (weak neck muscles), and at five months old she was diagnosed with Plagiocephaly. Her head had become misshaped so it was necessary to wear a doc band helmet. At about one year old, we noticed Jillie beginning to get behind in walking, talking, and other developmental areas. We started working with Birth to 3 to improve her PT, OT and speech. During this process, she was diagnosed with Gross Developmental Delays (she was delayed about a year). When Jillie was three, she was diagnosed with educational autism. She continues to struggle with, and receives services to help her with speech, gross motor skills and fine motor skills through her school. Despite all of these setbacks, she was making real gains at school both physically and academically, enjoying spending time with new friends, reading beyond her grade level, and was always at the top of the growth charts for her height and weight.   

One day after being picked up from her summer school, we noticed she was holding her arm funny. We tried to move it around, and she yelled in pain. For the first time we heard her say, “Doctor, I want doctor.” After several visits to her pediatrician and urgent care, we were finally referred to Children’s Hospital.

It took almost two months, a couple of misdiagnosis’ and a new pediatrician to realize that Jillian’s blood counts were really off. She was in the hospital another two weeks for additional testing. When we left, they thought it could be a Rheumatology type of bone disease and had a meeting set up with that department after Thanksgiving. They also set up a biopsy to double check for cancer, but doctors thought it was a long shot. They told us they “just need to be thorough”. At this point she could barely walk or even get out of bed. You could see that each morning when she had to sit up it was really a struggle, and it seemed like she was telling herself that this is the way it is for her in her life, not understanding why everything hurt when it didn’t before. We were trying everything we could think of to help her, and it really hurt to see her like that.

We had one of her best days on Thanksgiving enjoying time with family and staying up late. However, the next day she could not walk and she had a fever. We went through the ER for the fifth time since June and they kept us overnight. The next day we got the results of the biopsy. They ended up doing two separate pulls- one drew just necrotic bone again and the other showed it was Cancer- Stage 4 Neuroblastoma.

We then learned that the cancer started in the adrenal gland and spread to her lymph nodes, the bones in her hips, elbows, shoulders, skull, ribs and parts of the legs. All of the trouble she was having with her hips and elbows was her cancer. It is frustrating to not find any answers for over four months, but we are thankful we did finally get some answers and that appropriate treatment and medications for pain have seemed to help her. When we think back to those months, it is heartbreaking that Jillie had to endure so much pain for so long. It is a real testament to her strength, and she makes us so proud every day.

Jillie has completed five rounds of chemotherapy and her stem cell collection. She has two high dose chemo rounds yet to go, radiation on the dense cancer in her bones, and five rounds of immunotherapy where they will reintroduce her stem cells to her body in the hopes that they will destroy any remaining cancer cells. We are very fortunate in that the cancer that was in Jillies lymph nodes, adrenal glands, and on her organs has been virtually eradicated with the chemo she has already received.

Her body is a shell of what it was. She is weak and tired all of the time and at one point she had lost about 20% of her body weight and has very little muscle strength. She is now using a wheel chair or walker if we have to travel longer distances such as across parking lots, or through the corridors of the hospital. The academic and social gains that she had made in school have essentially been lost since she is not allowed to go to school anymore to reduce the chances of infections.

Her beautiful, feisty spirit is working to her advantage though, and she is still staying positive. The other night when we put her to sleep she said: “A beautiful day is coming in the morning”. While it completely broke out hearts to hear that, we know that if she can say that then we need to stay positive and strong just like she is.

 

Meet Liam.

Liam was born with VACTERL association which is an acronym used to describe non-random association of birth defects that affects multiple parts of the body. Babies who have been diagnosed as having VACTERL association usually have at least three or more of these individual anomalies. Liam has five out of the six letters in VACTERL including one kidney, a tethered chord, PDA in his heart, half of a vertebrae in his upper spine, and limb (thumb with no bone in it).

At four months old Liam had his first surgery on his tethered spinal chord. They were releasing the spine from being attached to the base of his bottom. He recovered quickly from this, but it pulled the water a “usual” child would have on the top of their brain to the back of his head, which can cause future issues including walking, bathroom issues and growing problems. Liam’s doctors monitor this with an MRI every six months. In October, Liam underwent surgery again as the doctors removed his thumb and moved his index finger to replace his thumb. A few short months later, Liam was in surgery again, this time to repair the PDA in his heart.

Being part of a big family and having a huge support system has helped his family cope, and Liam live a “normal life”. He is surrounded by so many people who love him and who are involved in his life including his grandparents, aunts, uncles and cousins.  For Liam’s parents, there has never been any time to sit around gazing at Liam wishing things could be different for him. They all just deal with things as they come.

Liam is two years old and in his short life has already experienced so much. He will forever have the challenge of his health issues in his future. His mom, Kayla, shared, “When this journey first started, I had no idea what VACTERL association was or how to handle the changes that came with it, because VACTERL association isn’t something people openly discuss. It was a challenge to hunt down reliable information meant for parents of VACTERL babies, which made it all the scarier walking into a world of hospital hallways and multiple surgeries. Every VACTERL child is different, and yet the journey VACTERL families experience is so similar. Liam may face challenges as he grows up, and we will in turn be challenged as parents, but this very challenging time in our lives as a family has also been the most rewarding. I hope that by sharing Liam’s story, I can bring awareness about this diagnosis to other families.”