Who do we dance for?


Jax has been treated/followed since before he was born.  He was prenatally diagnosed with Post Urethral Valve, a urological blockage when I was 28 weeks along.  He was given less than 5% chance of survival if he survived the rest of the pregnancy.  I transferred my care to UVA at this point despite living 3 hours from the hospital.  Jax was born at UVA via emergency c-section in January 2012.  He suffered a pneumothorax, a hole in his lung, shortly after birth and was taken to the NICU immediately.  He was on a ventilator and had a chest tube for 7 days.  The damage to his developing urological system caused him to be born with Stage 5 kidney disease.  Jax spent 37 days in the NICU at UVA and has been treated there ever since.  While he was inpatient, he was on the vent, had a catheter, and a feeding tube.  His electrolytes and chemicals in his body were all out of whack and he was on too many medicines to count at the time.  He struggled with growing and gaining and gained less than a pound during his 5-week stay.  Jax is a "UVA Lifer" and will need to be seen there for the rest of his life to manage his kidney disease and bladder dysfunction.  His current care plan is to manage his disease with medication until his function decreases enough to be eligible for a kidney transplant.  All will take place at UVA.  Currently, he comes to the clinic every 3-6 months and is seen by renal, urology, and orthopedics.  On top of his kidney disease, he has developed Legg Calve Perthes, a rare bone disease


Rayray was diagnosed on May 20, 2013, at 21 months old.


She was diagnosed with High-Risk Neuroblastoma Stage IV and had an 18-month treatment plan. 


- She had 6 rounds of chemo

- A stem cell harvest

- Surgery

- High dose chemo with transplant

- 20 days of sedated radiation

- 6 months of immunotherapy..


She will be 7 yrs old on August 14th.


She is 3.5 yrs off treatment and currently NED, no evidence of disease. 


She's tiny, but mighty and lives life by this motto "teamwork makes the dream work".

tyler shannon

Tyler was diagnosed on November 22, 2013 at 4 1/2 years old with bilateral retinoblastoma, a cancer of the eyes.  Just a month prior to that, he was also diagnosed with absence seizures.


He had 6 rounds of chemotherapy and approximately 8 rounds of cryotherapy and laser therapy on both eyes.  He was put under anesthesia once a month for about 12 straight months.  


He just turned 9 yrs old on April 19th.


He is 3.5 yrs off treatment and currently in remission.


He’s such a fighter - his motto during his entire battle with cancer was to “kick cancer in the face!”


Lindsey was born on March 30th, 2016, she was 4 weeks early. We went in for a routine ultrasound, and they told me I had no amniotic fluid. I was immediately brought to MJH Hospital where I was prepped for an emergency c-section. When they went to cut Lindsey out, they told me I had a maximum of 2 tablespoons of fluid, where we were told a normal pregnancy has about 2 liters. They said this was abnormally low, but they weren’t sure the reason. In doing Lindsey’s lab testing they found that her kidney function numbers were abnormally high, though they thought that this may be due to my levels still going through her blood, but the next day they were even higher. A renal ultrasound was done at just two days old when the doctor came in to tell us the results we were told that she didn’t have one kidney and that we were being transported to UVA Children’s Hospital for further evaluation... my husband and I thought “one kidney, it means no contact sports! That’s easy!” But when we got to the UVA NICU we got a much more complicated answer. Lindsey has what’s called Branchiootorenal syndrome. This means she has only one kidney, which is actually common; however, the one kidney that she has doesn’t function properly. She also has a pinpoint hole in her neck, that’s called a Branchial Cleft sinus. Within 45 mins of getting settled at UVA NICU we got to meet with all of the physicians that were going to be immediately working Lindsey’s case, including Dr. John Barcia her nephrologist. Dr. Barcia told us that Lindsey was going to need dialysis within the first ten days of her life, she was never going to have a normal life, and essentially that life wasn’t going to be easy for us.  At that point, she was going to need a kidney transplant within her first 2 years of life. 


Lindsey spent 15 days in the hospital, she was cared for by some of the best nursing staff I could have asked for. If you need to leave your child overnight in the hospital, it’s amazing to know that you can call at any time and speak with the nurse, day or night, and someone is there to reassure you that your child is in the best hands possible!


Lindsey has been to the doctor almost every month for the first year of her life, and every other to every third month since she was discharged from the hospital, she has blood draws with almost every visit to assure that she is doing ok. She will be two years old in just two short weeks, and she is truly my shining star. Lindsey has given me my faith back, when I honestly thought I had lost it!

© MadiTHON 2019 

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