The Road to Diagnosis: Anthony’s Story

received_825234961033It has been a long and winding road for the Greco family. After numerous diagnoses, their son Anthony finally learned what had been causing his pain and suffering…but getting to this point was not easy. After visiting his local pediatrician in February of 2016, Anthony was originally diagnosed with tension headaches; however it would all turn out to be much more.

The headaches slowly became more persistent and Anthony soon began experiencing additional symptoms, like vomiting and fever. Anthony’s mother Danielle rushed him to their local ER, where a CT scan would show that all was normal…but that night would tell a different story.

“Anthony awoke with pain throughout his body, one-sided paralysis and was unable to speak. Thinking he was having a stroke we called 911 and went back to the ER, where he saw neurology and was diagnosed with a hemiplegic migraine. Various medicines were given that weren’t touching his headaches, helping his vomiting, nor alleviating his new onset of eye pain. We were beside ourselves.”

After undergoing a spinal tap in June, Anthony was diagnosed with meningitis and immediately rushed to Connecticut Children’s Medical Center.

“A whole slew of tests were done and many consultations with many different doctors. Nothing was adding up. All blood tests and cultures were normal. The normal meds given for meningitis weren’t taking it away, but he was feeling better” recalls Danielle. “An MRI was done and showed increased intracranial pressure – a whole lot of fluid buildup on his brain and spinal canal. It was then deemed that the reason he was feeling better was because the spinal tap took away some of the fluid that was pressing on his central nervous system and causing all these issues.”

Anthony was then diagnosed with HaNDL, a rare headache disorder. For the next month, he would have no episodes, until mid-July when all his symptoms would return. “The headaches, vomiting, severe eye pain, paralysis and speech difficulties all came back. He was sent for another spinal tap. Issues alleviated again until a few weeks later, when his episodes and symptoms returned. We again went for another spinal tap, but this time his white blood cell count had sky rocketed.”

Anthony was once again rushed to Connecticut Children’s and it is here the Greco’s would finally discover what had been causing his symptoms all along.

img_20161125_122951“Our Neurologist brought Hematology and Oncology on board. A spinal tap and a cytology of the fluid was done on August 24, 2016. The next day we were informed that Anthony had cancer of his central nervous system. A cancer called B Cell Lymphoblastic Lymphoma…

Anthony has been receiving treatment with the Center for Cancer and Blood Disorders since his diagnosis and we couldn’t be happier with the care he has received. A month into treatment all cancer cells were gone. He unfortunately has to endure a total of 2 1/2 years of chemotherapy to keep the cancer away. Had it not been for the doctors at Connecticut Children’s Medical Center, I really don’t know where we’d be right now. They stopped at nothing to find out what was going on with our son. To them, we are truly grateful.”

Extraordinary Outcomes for an Extraordinary Little Girl: Isabella’s Story

isabella-1Isabella O’Connell was just 3 months old when her pediatrician noticed ‘cafe au lait’ spots suddenly appearing on her skin. “The spots were appearing at such a rapid pace” said Isabella’s mother, Melissa Kulak. “Thankfully, he referred us to a neurologist at Connecticut Children’s Medical Center.”

Shortly after being referred, Isabella had her first appointment at Connecticut Children’s Division of Neurology, where she met Dr. Francis DiMario. Dr. DiMario would finally provide the answers Melissa had been waiting for…a diagnosis no one could have expected.

Isabella had Neurofibromatosis, a rare neurological condition which occurs in approximately 1 in 4,000 births each year. The genetic disorder can cause tumors to grow on nerve tissues and even on or underneath the skin.

Following her diagnosis, Isabella experienced very little symptoms as a result of her treatments, but in early  2016 that would all change. The 3-year-old began feeling a pain on her side where she currently had a band of tiny spots.  At her 6 month checkup, Dr. DiMario suggested an MRI that would reveal 2 tumors growing on Isabella’s right and left optic nerve.

“From that moment on, we also began seeing Dr. Eileen Gillan of the Center for Cancer and Blood Disorders. Dr. Gillan has been keeping a close eye on Isabella’s condition ever since” said Melissa.

Three months after that first MRI, a follow up would discover a new tumor growing at the base of Isabella’s head – a tumor that was causing her severe hydrocephalus. It was more devastating news that Melissa did not want nor expect to hear.

isabella-2“That 3 month MRI came and our world got flipped upside down. Within a week we had seen Dr. Marcus Bookland of Neurosurgery, scheduled a surgery date, underwent a biopsy and had a shunt placed.”

The procedure was a successful one and Melissa is happy to report that Isabella’s tumors are in fact shrinking as a result of her treatments and medication. She is currently on her third round of targeted chemotherapy. “So far it is working amazingly. We had our 6 month MRI to make sure Isabella’s shunt is working properly and found that her tumors have shrunk quite a bit. She also no longer has any trace of hydrocephalus.”

“In one word I would describe our experience so far as extraordinary. Although, Connecticut Children’s definitely deserves more than one word.”

Kids Helping Kids: Christopher’s Toy Drive

 Becky, shares her son Christopher’s inspiring story and why he wanted to give back to fellow patients at Connecticut Children’s this holiday season. 

img_0708We brought Chris to the ER in January 2015 after he was unable to walk. Doctors found a tumor on his spine which began a whirlwind of scans, needles and a hospital stay that, at the time, we didn’t know how long would last.

The one thing that Chris could look forward to and that we could use as a reminder to get through the next procedure, chemo or scan was the prize box and toys he received for being so brave. Kelly and the rest of the staff at Connecticut Children’s Medical Center were instrumental in helping us through one of the toughest times we have faced as a family and one way we felt we could thank them was by giving back.

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Last December, I wanted Chris to give back to the hospital in a way that was meaningful for him and something that was feasible to do year after year. He decided that a toy drive was a good idea because he always looked forward to getting a toy at the end of his visits. He wrote his letter and made a list of family and friends that he would like to ask and send his letter. After the toys were donated, he wrote thank you notes to those who donated to show his appreciation. He did the same thing this year. (Now that he is in first grade, his letter was done much more independently!) He added several people to his list and those that he asked were so excited to help him.

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The best part is seeing the excitement on Chris’ face when he looks at the toys people donated as well as when he was giving the toys to Kelly. We hope to continue this each year and that it gets a little bit bigger to be able to make even more kids smile. We are so proud of Christopher for wanting to continue this tradition and for being able to see the importance of giving back!

Thank You for Taking Care of Us

By Melissa Wert, a grateful mom

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I snapped this photo moments before Nick took Ryan back into the OR, and held his little hands while his 31″, 27lb body went stiff and he succumbed to the anesthesia gas mask attached to his tiny face.

The patient advocate at Connecticut Children’s was nice enough to smear the mask with grape Chapstick, so that Ryan couldn’t smell the strong gas. It’s amazing what tiny details bring you great comfort when the entire situation feels totally out of your control. This is the face of a small boy who has no idea what’s happening, just that his day isn’t right. No eating. No milk. Anxious parents. A strange place filled with so many strangers, all looking at him.

This is the face of a dad about to bring his baby boy into surgery. Terrified but resilient, counting on the prayer we said in the car as we parked, taking every extra moment we had to not walk inside. Please keep our boy safe. Let him come out stronger, healthier, better.

His procedure was minor, but our fears were large. I’m coming to realize that as NICU parents, the feeling of having your baby whisked away from you with no idea what’s happening next returns to you all too easily. Too quickly. And likely unnecessarily. But it’s always there – the fear. The anxiety. The heartache. It shapes how you parent and who you are as parents. But it also makes you strong. Brave. Willful.

I’m happy to report we’re all back home and little Ryan is happy as a clam, back to his normal self, but with some sparkly new ear tubes we’ve dubbed his “robo-ears”. Thank you, so much, to everyone who prayed for us and sent us your well wishes. They worked.  And an even bigger thank you to the amazing staff at Connecticut Children’s Medical Center for taking such good care of all three of us. #BabyLove #DontForgetDads

Nicholas the Brave

Nicholas’s father joins our blog to share his son’s story and help raise awareness of epilepsy.

nicholasThe boy in the picture is my son Nicholas. He is 7 years old and was diagnosed with infantile spasms around 6 months of age. He had 50 to 60+ seizures a day for about 2 1/2 years straight. The doctors tried every possible medication available at the time to control them with no luck. Finally after a tough 3 years and medication, he was seizure free.

That was until 6 months ago when the seizures came back. He was hospitalized and we were told that they have come back in a different form. We were told this could happen but had hoped it wouldn’t.. Everything had been going so well but they kept coming back.

Unfortunately, the seizures have set him back developmentally. He doesn’t eat solid food and his main source of nutrition is Pediasure. He lost the ability to eat solid foods when he was put on the ketogenic diet to stop the seizures. Since then he will not touch food. Communication is also a problem. As I stated, he is about one year old developmentally. His speech is very limited and he does not talk much. He can say mommy and daddy and knows his colors. He is learning but has a long road ahead. He also suffers from cerebral palsy on his right side… doctors don’t know when or how this happened either but it limits his function on his right side.

Throughout all this he smiles every day, loves music, NASCAR, WWE, monster trucks and watching his brother play hockey. We have learned a lot as a family and dealing with this disease. It’s not easy but if Nicholas can smile so can we.

We never know what tomorrow brings and making plans is hard to do, but my intention is to raise so much awareness and let others know that they are not alone. We have been there and are still there. I’m looking forward to sharing Nick’s story and helping others in future. We will not give up.

Help us raise awareness and share Nick’s story!

Why I Run

Written by Kim Karr

i-am-running-forThis Saturday, October 8, I will run the 5k portion of the EverSource Hartford Marathon on behalf of Connecticut Children’s Medical Center.

You all know what Connecticut Children’s means to our family, and you are aware of the fact that we have spent a considerable amount of time there with Emily since her diagnosis of Crohn’s Disease twelve years ago. She was nine years old at diagnosis and required emergency surgery and life support of TPN for nearly three weeks. She was there again at seventeen years old to treat more complications of this vicious disease. And then last year she was there again for nearly an entire month … she had two emergency surgeries, the last of which resulted in an ostomy, which she lives with still.

I am very familiar with Connecticut Children’s. I spent almost every night there with Emily, except when Marko would relieve me for a day to spend time with our sons and rest in our own bed. I am so familiar with the stinging smell of hand sanitizer, the squeaky plastic bed, the constant beep beep beep of pulse-ox monitors up and down the hallways. It’s all so familiar that I’ve almost stopped registering the details. It had become white noise. I vaguely remember the 1:00am slipper shuffle, down the hallway and into the “family kitchen” to fix some herbal tea, hoping for maybe even an hour of resulting sleep. Sometimes I would come upon another worn and worried parent who was hoping to do the same. Our shared, tired half-smiles conveyed so much more than words ever could. It’s a blur now.

What has never blurred though, is the memory of the time, the care, and the attention that Emily received while she was there. Whether it was from the top-notch doctors and nurses who saw to her every need, or the child life specialists who made sure that she had access to what made her happy – art, books, movies… Emily and every other child at Connecticut Children’s was, and IS treated like a kid who is going through a bad time … but is still a kid. A kid who is still whole. A kid who is still special.

Please click on this link http://www.youtube.com/watch?v=CbAFjZ-4ACU&sns=em because I want you to see more about Connecticut Children’s Medical Center.

And then, if you can, please click on this link https://www.crowdrise.com/team-ct-childrens-EversourceHartfordMarathon2016/fundraiser/kimkaar to support my fundraising efforts for this amazing hospital. The Connecticut Children’s Medical Center Foundation helps make everything that I just described available to all children and families who need it. Fundraising and raising awareness for Type 1 Diabetes and Crohn’s Disease are front and center in my world … but fundraising for Connecticut Children’s helps me to reach all areas of pediatric disease. I am so grateful for your help.

Lastly, if you cannot donate at this time, I understand. I’ve been there. I would like to ask you to please keep these kids and families in your prayers though. I believe that it does make a difference. Thank you.

Wish me luck! It’s a long-range forecast but they’re predicting rain. That’s okay. I won’t melt. I haven’t yet 🙂

Sugar! Tasty Trouble?

Pat Esposito MS RD CD-N CNSC/Clinical Nutrition Manager at Connecticut Children’s

September is National Childhood Obesity Awareness Month and provides an opportunity for learning about ways to prevent and address this serious health concern. Pat Esposito, Clinical Nutrition Manager at Connecticut Children’s shares expert advice and asnwers your questions on sugar.

esposito_blog-postGuidelines for healthy eating are always changing….so what is a parent to do? The latest update from the American Heart Association suggests that sugar be limited to 6 teaspoons per day for both children and teens. But just how much is a teaspoon and how can you keep track of it? At times, you’d wish there was a mobile app to help! There are lots of questions, but the good news is, most of this all boils down to common sense.

Introducing children to new foods when they are young will build eating habits to last a lifetime so starting off right means getting them to eat vegetables, healthy sources of protein, and other food items that provide enough vitamins and minerals! But what about other foods?? A cupcake here, a cookie there…..are the ‘extras’ really that bad?

Let’s take into consideration that avoiding soda is now part of a new recommendation by AHA which states that children older than 2 years of age should have no more than 8 ounces of soda a week and children under 2 years of age should have none at all. But how do you say NO once your little one has had the taste of grandpa’s favorite soda?

You may be asking if just a sip of soda is really that bad…what if it’s just one time? The answer is yes! Sugary foods and beverages provide no nutrients whatsoever and when you child eats or drinks those items he or she is less likely to eat other vitamin and nutrient rich foods. So it is very important you wait until a child is older before introducing soda. Remember, limiting soda intake is a great first step in cutting down sugar intake!!

MORE TIPS AND TRICKS
• Add a splash of unsweetened orange juice to a seltzer for older kids who want the FIZZ!
• Opt for water or milk for younger children…..don’t let them taste those sodas!!
• Limit sweet candy, cookies and cakes that have added sugar, fructose and honey!!
• Opt for fresh fruits for that healthy sweet and refreshing summer flavor!!