Joseph, we call him JoJo, was born on November 19, 2009. He is our second son. Our family consists of our oldest son Nick (5 years old), my wife, Stacie and me, Joe. We live in Kinnelon, New Jersey, which is about 35 miles outside of New York City.
When JoJo was born, our family became complete. Stacie and I always wanted two kids, especially two boys so they can be lifetime friends. We couldn’t have been any happier to have JoJo and we still are to this day.
JoJo passed all the tests in the hospital when he was born. He was hitting his milestones, but he never slept well and he would grunt often. Our journey started with a visit to his pediatrician. For 9 months, we checked off other possible reasons behind him not sleeping and the constant grunting – such as the following: cold, virus, strep, acid reflux, colic, ears and nose. It wasn’t until he started showing signs of early puberty that our pediatrician told us to see an endocrinologist.
The endocrinologist observed JoJo, tested his blood for hormone issues and took an x-ray of his hand to determine his bone age. A week later, she called saying that his testosterone levels were very high for his age and that his bone age was a 16 month old instead of a 9 month old. From these results and also from observing JoJo, she recommended getting an MRI of the brain.
I will never forget the time, where I was or what I was doing when the Endocrinologist called to tell me that she got the results of JoJo’s MRI and that he had a 1 inch mass in his head. She also said she had never seen anything like it before. Our family was extremely upset and scared over this life threatening news. She recommended a pediatric neurosurgeon in New York City and told us that was all she could do. We knew it would be a long and hard journey, but somehow we would fix this and JoJo would be okay. We had our family and our faith.
The next day we met with the first neurosurgeon and neurologist. Our first miracle occurred when the surgeon said his tumor was benign – it would not kill him and it was operable. This is when we learned JoJo had a Hypothalamic Hamartoma “HH” Tumor/Lesion/Growth. This HH was causing the early puberty, called Precocious Puberty. At the time, we were told not to operate and to just observe JoJo to see how things unfold over time.
We wanted another opinion, so we visited another neurosurgeon in New Jersey. He concurred with the same plan as the first neurosurgeon and neurologist.
After visiting with the two neurosurgeons and a neurologist, our plan was this: have the endocrinologist give JoJo a hormone shot once a month to control his precocious puberty and seizure medication from the neurologist to try and control any seizures he might get.
We did the above plan for four months. The hormone shot was working, but JoJo’s grunting was getting more frequent and we were starting to see a pattern. This is when Stacie really started surfing the web for any information and for people we can find to help. We found four things that helped: 1) The hopeforhh.org website; 2) speaking to other families on this website; 3) Doing a Google search for videos of Gelastic Seizures and 4) Dr. Harold Rekate.
After doing our research on the web, speaking with other families, talking with other doctors and observing JoJo, we realized that JoJo’s grunting was indeed Gelastic Seizures and he was having about 100 a day as well as through the night. We knew we needed to find the best doctor in the world for JoJo and that we needed to get this HH removed before things got worse and he started declining developmentally.
Our second miracle occurred when I placed a call to Dr. Rekate at the Barrows Institute in Arizona. This facility and Dr. Rekate provided the best chance for a successful removal of JoJo’s HH. I was informed that he no longer worked at this hospital and that he had moved to New York. I got off the phone, did a Google search and found him 50 miles away from our house at North Shore – LIJ in Long Island, New York. This was complete divine intervention. We had our first appointment with Dr. Rekate one week later.
During our appointment with Dr. Rekate, he walked us through what JoJo had in great detail. We learned about his size – 14.26cm, type - 4, what would happen if we didn’t operate, what complications could happen if we operated and how he would do the operation. We also found out that he would have to do more than one operation to get the tumor fully out. He informed us that his experience showed that getting the entire tumor out early gave the best chances of full success long term. Stacie and I were both very scared, but also relieved. Relieved because we finally found the best doctor for JoJo and he landed right in our backyard. We scheduled JoJo’s first operation during the meeting.
JoJo’s first operation occurred on June 21, 2011. It lasted 8.5 hours. We couldn’t believe that our little guy at 19 months old was going through this operation and this entire ordeal. It was a very surreal feeling and still is to this day.
Right after the first operation, our third miracle occurred when JoJo was sleeping and he was no longer grunting. For the first time in 19 months, our little guy was actually sleeping like a normal baby. It was unbelievable. His Gelastic Seizures were gone. Dr. Rekate told us that they got 90% of the tumor out and that they can get the rest of the tumor out endoscopically. He said the operation went much better than expected. We only had two complications occur with this surgery; water on the brain and low sodium. The low sodium went away on its own after two weeks. The water on the brain was removed by surgically inserting two tubes in JoJo’s head and draining the extra fluid.
JoJo’s second operation occurred on August 9, 2011. This operation lasted 3.5 hours and was done endoscopically. This was our fourth miracle. The rest of the tumor was taken out and JoJo had no complications.
It is currently December 1, 2011 and JoJo is doing great. He has the entire tumor out and no seizures. We believe after the tumor was removed that JoJo’s speech improved greatly along with his sleep patterns. He is a very social and outgoing child. He is either at or exceeding his milestones.
Before the tumor was removed, JoJo had precocious puberty and his bone age was higher than his age. After the surgery, JoJo no longer has precocious puberty and no longer requires the monthly hormone shot. However, his bone age is the age of a 4.5 year old and he is only 22 months old. Our new challenge is to monitor his weight gain in the hopes that we can close the gap in his bone age.
Our advice for other families who have a child with this condition are as follows:
- Get educated on HH. Use the web, talk to doctors and talk to other families who have or had this condition.
- Rely on family, friends, prayer, work and coworkers for support.
- Work with a doctor who has a tremendous amount of experience with HH – Dr. Rekate. This is key. There are a lot of doctors that will say they can handle this tumor, but they do not have the experience. Experience counts for everything in this situation. Go to the best, Barrows Institute or Dr. Harold Rekate at North Shore LIJ. There are new technologies and procedures that are beneficial to increasing a successful removal.
- Don’t give up. You need to be persistent and proactive in your search for answers. Where there is a will, there is a way. You need to take full control.
- At times, you will have to take calculated risks. Without risks, there can’t be any rewards.
- Your number one goal is to protect your child from harm and at the same time get him or her cured.
We want to thank the HH community, the medical companies that design state of the art technology for these type of operations, North Shore Hospital in Long Island, New York, all the nurses, attendees and residents, Dr. Harold Rekate, Dr. David Langer, Dr. Michael Myers, Dr. Goradia, Dr. Daisy Chin, and Dr. Lydia Charles for all the guidance and love for JoJo and our family. They gave us all a new life. We are forever grateful.
We wish all families affected by HH the very best in your journey and hope our story makes it a little easier.
Love, Joe, Stacie, Nick and JoJo Canariato