Braver. Stronger. Smarter.

“Promise me you’ll always remember: You’re braver than you believe, stronger than you seem and smarter than you think.” ~ A.A. Milne

quoron-image

In honor of National Winnie the Pooh Day, patient Quoron Walker reflects on his inspiring journey and shares what the famous A.A. Milne quote now means to him as a cancer survivor.

Many times, strength is something you don’t realize you have until it’s put to the test.  I didn’t realize how strong, brave, or smart I was until I was diagnosed with osteosarcoma (bone cancer) at 19 years old.

I was in the prime of my life: studying Communications at the University of Hartford and was a budding singer/songwriter.  When I was diagnosed it felt as though someone had snatched me from my existence.  At the same time the world around me kept going, and seemed to be moving fast.

One of the toughest changes to accept was that many of those who I thought would be by my side as I fought cancer vanished.  There were times when my spirit was very low and I was extremely lonely.  I still had my mom, brother, uncle, grandmother, and my good friend Krystal to support me, so I never was truly alone.

I remember at one point my entire body was covered in blisters after a horrible reaction a chemo drug.  The pain was excruciating and it looked even worse.  One of the scariest moments during my year long treatment was the limb salvage surgery I had to remove and replace my my left femur where the cancer originated.

I didn’t know what to expect, but I made it.  I continued chemotherapy while doing intensive physical therapy.  Looking back, I don’t know how I did it.

The main thing that kept me going was my faith.  God had been by my side through it all, and still is.  I always saw myself on the other side of cancer being healed and continuing my life where I left off.

Many people I’ve come in contact with after I was diagnosed have said I was strong but I thought I was just doing what I had to do in order to live.  I didn’t realize I was different until I sat back and thought about others who had lost their battles with cancer.

I learned that true bravery isn’t acting like everything’s okay and that nothing upsets you; it’s facing adversity in spite of your fears.  True strength is getting up everyday knowing that there is something bigger than yourself that controls everything.  And being smart is knowing all of this while being honest with yourself.  It’s knowing that some days will be great, some may be horrible, but you make that day the best you can by making the best decisions you can in that moment.

After beating cancer twice, having several surgeries, and being on what felt like a roller coaster ride that knocked the wind out of me – I’m healed. I look like myself again and have accomplished so much in spite of my illness.  I graduated with honors, found a job in my major, and continue to sing and perform. I learned about myself and I know Quoron.  Now, whatever may come my way, I know I can handle it.

Photo Courtesy – Norman Oates/Norman Oates Photography

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.”

Keep Your Resolution: 5 Simple Ways to Live Healthy this New Year

Written by Connecticut Children’s Nutrition Team

We are officially three weeks into the New Year and if you are having trouble keeping your resolution odds are you’re not the only one. Many of us commit to living a healthier lifestyle and even though we try, without proper tips and tricks it can be difficult to master. Below are 5 techniques that can help you better stay the course in 2017. Whether you follow all 5 or just a few, be proud that you have made your health a priority!

I hate a vegetables! I'm not eating this!

1.Hide your salt shaker (and a few other items…)
As they say, out of sight, out of mind. You’ll be surprised how little salt you’ll use when it’s not so easily accessible…or existent for that matter. In fact, there are plenty of substitutes that can add tons of flavor in absence of salt, like dried herbs and spices. Other items to remove or replace – swap out butter for non-tropical oils like olive or canola oil.

2.Take the stairs
Slow elevators? Ever feel like it would just be quicker to take the stairs? Then do it. Ideally, we should all be taking 10,000 steps per day and getting 30 minutes of exercise 5 days a week.  So how can you make this happen when it seems impossible? Go for a walk at lunchtime – outside or down the hall, sign up for that evening yoga class…and if you happen to be at Connecticut Children’s, try the DINO Walk – just follow the dinosaur signs throughout the Medical Center!

3.Give water a try
I get it…you don’t have time or just don’t like the tasteless beverage but I swear the more water you drink the better you’ll feel! Eight cups a day is key…so how can you start drinking more H2o?

Try flavoring your water with fruit or a squeeze of lemon. Using  a large reusable cup/thermos can also make drinking water much, much easier – and can be a great reminder to drink more water when you’re in the office or at home. Also, be sure to limit your intake of sugar sweetened beverages and avoid sodas. Opt for seltzer or infused waters instead!

4.Change up your cooking methods
Switch up your cooking methods this year. Limit your frying and start baking, grilling, broiling or stewing instead. In addition to cooking differently, why not cook different things? Add fish to your diet 2 times per week. So what should you limit? Limit rice or pasta intake to the size of your fist and protein to the size of your palm, per meal. Also, when possible try and eat whole grains!

5.More fruits and veggies please
When you sit down to eat, your plate should be chock full of color…in fact, at every meal, half of your plate should be fruits and vegetables. Not enough color? Add more. Let this be your guide and you’ll be consuming 5 servings of fruits and vegetables every day in no time!

 

 

 

3 Quick Facts about Childhood Insomnia

Connecticut Children’s Medical Center’s “Bedtime Doctor” Lynelle Schneeberg, PsyD, joins our blog to share some fast facts about childhood insomnia.

Preparing her to sleepConnecticut Children’s Sleep Center works with many families each year to improve their child’s insomnia. Insomnia refers to trouble falling asleep or trouble staying asleep. Here are three quick facts about childhood insomnia that may help improve your child’s ability to fall and stay asleep in this new year.

1.) Not every child with insomnia requires a sleep study
Many parents think that a child with insomnia needs a sleep study. However, most children (unless they have very obvious symptoms of sleep apnea, such as witnessed pauses in breathing or loud snoring) do not need a sleep study. Most childhood insomnia can be improved with a better bedtime routine (see below).

2.) Having a parent present while the child is falling asleep can negatively impact the child’s ability to sleep deeply
Parents often ask, “Why does my child fall asleep quickly at bedtime but have difficulty staying asleep?” This problem is common and is often due to the fact that the parent is present at bedtime in the child’s room while the child is falling asleep. The parent then leaves. When the child wakes up again during the night, as all children do, the child must then call out or come and find the parent in order to fall back to sleep because that’s the only way they know how to fall asleep (when a parent is present).

3.) Granting last minute requests at bedtime does more harm than good
It is common for a child to ‘stall’ at bedtime and or make lots of additional requests after the bedtime routine is supposed to be over. Their child might want “one more hug” or perhaps another bedtime story. One child might want to make lots more trips to the bathroom while another child might want their parents to check under the bed or fix their blanket just so. These extra requests often go on for a long period of time. Many parents think that if they grant all of these requests, their child will then finally fall asleep. However, granting all of these requests after lights out actually rewards the child for staying awake (by giving the child lots of extra attention when the bedtime routine should actually be over). There are some really simple ways to make sure that your child has everything he or she needs at bedtime but that also allow you, as a parent, to set some reasonable limits.

The Sleep Center at Connecticut Children’s Medical Center can help design and customize a “new and improved” bedtime routine for your family. The new routine will be designed to improve childhood insomnia by helping your child learn to fall asleep independently and in their own room. This goal is accomplished gradually over time so that the process will not be overly disruptive or upsetting to your child. The bedtime routine will also have some steps for you, the parents, to help with limit setting at bedtime while still ensuring that your child has everything he or she needs to fall asleep quickly, easily and peacefully.

If you think that your family could benefit from a new bedtime routine, please call the Sleep Center at (860) 837-6643 to make an appointment with Dr. Lynelle Schneeberg, our behavioral sleep specialist.

*Register for Dr. Schneeberg’s free, educational sleep webinar on January 19th at 12:15pm. Visit www.ctchildrenswebinar.com to learn more.

Know the Dangers: Furniture Safety

By Luis Rivera, Safe Kids Connecticut, Connecticut Children’s Medical Center

*Video courtesy of Wall Street Journal (YouTube)

We probably all saw the very scary video of a dresser falling over on  two young boys. These boys pulled out the shelves and used the shelves to climb up the dresser. What we all need to understand is that this is predictable behavior for young children. The video can be hard to watch because we know that when this happens, many children are not as lucky as these two boys were.

Each year children are seriously injured and even killed in furniture tip-over events. The young boys in the video were fortunate enough to escape from this potentially deadly situation with just minor injuries.

Children learn by exploring the world around them. As adults we need to understand what in a child’s environment poses a deadly hazard. Children aged five and younger are most at-risk, with most of the injuries that children suffer at home being predictable and preventable.

With furniture like a dresser or a television, parents need to make sure that it will not tip over. Furniture companies will include a way to anchor furniture to the wall. You can also buy furniture anchors or straps from most hardware stores. Other important home safety measures include using safety gates to prevent children from falling down the stairs, and using electrical outlet covers to prevent an electrical shock.

Safe Kids Connecticut wants to encourage parents and caregivers of children five and younger to conduct a safety check of their homes to make sure that their televisions and furniture are safely secured. This will help to ensure the safety of your children in your home. To learn more, visit www.ctsafekids.org.

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.”

A Part of Our Family

The Howard family shares a message of thanks to Connecticut Children’s Center for Cancer and Blood Disorders following their son’s last chemo.  

gage-photo-for-blogOur son Gage recently finished his last chemo on September 18th. We would like to thank all of the wonderful staff at Connecticut Children’s Medical Center!

Our world was turned upside down in July of 2013 when we learned that our son Gage had Leukemia.  From the very beginning the nurses on the 8th floor were amazing!  Dr. Andrea Orsey is truly an amazing physician and we cannot thank her enough for what she has done for Gage and our family!

His nurse Barb is hands down the best nurse around!  Gage loves her (as do we)!  I am pretty sure Barb can read minds because no matter what she always knew what to do to make Gage feel better!

These last three years have had its ups and downs.  We are so very happy to say that Gage has finally finished his chemotherapy.  It makes our hearts happy to see him just get to be a kid.  We could not have done it without you Dr. Orsey and Barb!!  You will forever be a part of our family!

Lots of Love XOXO,
The Howard Family