Sydney Marie Bernard

Cian Joseph Crowley

Cian Joseph Crowley entered the world on March 7, 2006. He would spend the next five months living the life of any normal infant – eating (his favorite pastime), sleeping (a close second), playing, and learning of the world around him. Cian, a name which means ‘ancient’ in Gaelic, was a healthy, thriving child who was consistently in the 100th percentile for height and weight and on-track for all developmental milestones.

However, this would all change in August of 2006. On August 18th, Cian developed a black eye, seemingly out of nowhere. This was the first sign something was wrong – yet his pediatrician’s office was not concerned. Within days, he started to act very fussy, which was not Cian’s demeanor at all. He stopped eating, which led us to wonder if he was possibly teething or had an ear infection. We took him to Urgent Care on the 21st – we were repeatedly questioned on the black eye by a nurse practitioner; while it was looking pretty bad, we had no choice but to be honest and say we did not know how or why he got it. He was diagnosed with an ear infection and given amoxicillin. Cian proceeded to vomit all day the next day, so to the ER (a pediatric ER) we went. Again the black eye was questioned, but not examined. He was given IV antibiotics and then diagnosed with a common childhood virus - hand, foot and mouth disease – and we were sent home.

The next day, Wednesday, Cian was lethargic – but we thought that was from the late night at the ER and the IV medication. Thursday morning, the 24th, we knew there was something still very wrong as Cian was incredibly sleepy and again not eating, so we made another trip to the pediatrician’s office. Unable to determine the cause of Cian’s lethargy, we were advised to go back to the same ER we had just been at two days before. The ER doc was very concerned about the black eye and Cian’s sleepiness so CT imaging and chest x-rays were ordered. Within 30 minutes we were told he had bleeding in his brain and clavicle bone fractures. As John and I wept, in a numb and bewildered state, the room started to fill with people - the thought was, this is an abused child. We were stunned – only three people ever cared for Cian: John, myself, and a nanny who watched Cian three days a week – and the notion she could hurt him was a ridiculous one.

There was great concern over Cian needing immediate neurosurgery so an ambulance was called to transfer us to Children’s Hospital Boston. As we sat in Boston rush hour traffic, we honestly expected Cian might die right then in front of us – he seemed barely conscious. Little did we know at this same time, the Department of Social Services was being contacted about the suspected abuse. When we arrived at Children’s, Cian was seen by a team of clinicians while John and I were questioned, separately, about Cian’s living situation, our marriage, etc. We then had to withstand seven hours of near silence as we waited for more information. At 10:00 that night, we got the diagnosis: Neuroblastoma. We had never heard of such a disease, nor did we know that it was possible for a baby to have cancer. We actually felt relief he was not abused.

While the doctors tried to paint an optimistic picture for us, as the next days unfolded, it became clear how sick Cian truly was – cancer, at stage IV, was present in his adrenal glands, lungs, liver, bone marrow, skull bone and brain (cerebellum). Cian was started on chemotherapy immediately and within about ten days, we were certain we had our bouncing, happy Cian back – it felt like a miracle.

But a miracle was not to be for our family – Cian succumbed to Neuroblastoma only seven weeks later, on October 13th – essentially the three rounds of chemotherapy he had completed failed to control his brain tumor growth, though the other tumor sites had been responding well. Something we have since learned about Neuroblastoma is that the mysterious black eye Cian had – actually known as ‘raccoon eye,’ can be a hallmark sign of the disease. Yet not one of the six clinicians that saw Cian that fateful August week seemed to know that. While we understand that getting the diagnosis earlier would not have saved Cian’s life, it may have given us more time with him, and it would have spared us the very painful accusation that was levied against us.

Not a day goes by that we don't think about our blue-eyed boy and the life he could have had. We take comfort in the work of Alex's Lemonade Stand knowing that its mission aims to further medical knowledge about pediatric cancer and help give children like Cian a fighting chance.

Jennifer and John Crowley

Quincy, Mass

www.cianscause.org

Sean Michael Hanson

Sean was born prematurely at 34 weeks on October 8th 2002 along with his triplet sisters Heather and Kathleen. They joined big brother Scott and sister Tiffany at home. At their 11mo. well baby check up it was found that Sean had a large mass. We were sent to the local hospital for an ultrasound, and immediately sent to Boston where on Sept 9th 2003, Sean was diagnosed with Stage 3 intermediate risk Neuroblastoma that was deemed inoperable. He had his biopsy, port placement and began Chemotherapy.

On October 10th, 2 days after celebrating his 1st birthday with his family on Cape Cod, he underwent an 11 1/2 hour surgery with Dr. LaQuaglia at MSKCC in New York. It was an incomplete resection due to tumor invading his spine L1-L4. Due to his young age and the favorable characteristics of the tumor it was decided to discontinue chemotherapy and take a “wait and see” approach. Sean had a second surgery to repair his Lureter in June 2005. He is now a happy, healthy five-year-old boy! He does not seem to have any residual effects from the chemotherapy or surgery. His MRI continues to show something, but at this point it has not grown and may even be scar tissue. He continues on 6-12 month check ups.

Sean will tell you, “ I had cancer, they took it out, and now I’m all better. I like to play on our swing set and ride my bike. I like to ski down the big mountain and go on the chairlift, and I like to play soccer and I’m going to play baseball. I also like our birthday!” He is a loving boy who likes to hold Mommy’s hand and give me hugs he calls squeezes, or to just snuggle. All my kids love to hold Alex’s Lemonade Stands and dress up in our yellow “lemonade clothes.” They love to sing and dance to the Alex's Lemonade Song and each has their own copy of the book. They are also look forward to tasting the lemonade all day long at the stands that we host or visit! Neuroblastoma can be a very aggressive cancer. The treatments are harsh, and too often the outcome is poor. We are honored to be a part of young Alex’s Mission to raise funds and awareness for pediatric cancers and to help all kids suffering from cancer, until a cure can be found.

With Hope, Ellen Hanson
http://www.caringbridge.org/ma/seanhanson

Eli Matthews

Eli had reoccurring fevers which began in September of 2007 and throughout October. Ruth, Eli’s mother, took Eli to the doctors, and they prescribed Amoxicillin for a sinus infection, ordered a blood test to find Eli had a low white blood cell count as well as low platelets. That test was done on November 8th. Ruth was to take Eli back on the 15th for yet another blood test. Ruth called, and got the test moved up to the 13th because we noticed Eli was getting very pale in color.

The results to this test were Eli's white blood cells and platelets to be even lower. Ruth called me to give me the news, so I decided to go to the doctor’s office to pick up the data from these tests. The nurse took me to a room to discuss the results. We were very worried as his counts had dropped so much. Eli's white cells were 1.6 and they should be 5.1 to 14.5. Also his platelets were 192 and they should be 150 to 400. I called Ruth to let her know I was on my way and we were going to (CHOP) Children’s Hospital of Philadelphia. We arrived in the Emergency room around 8PM and many tests were performed. The blood test showed Eli's blood counts to be dropping more. The doctors could not identify the cause of the low counts so they had to do a bone marrow test. On November 15th around 1PM the doctors entered the ER room to give Ruth and I the worst news of our life. Eli was diagnosed with (ALL) Acute Lymphoblastic Leukemia, a form of CANCER.

I'll tell you, our world stopped turning on that day. Eli was admitted to the hospital immediately, put on IV fluids, and the procedures started, including chemotherapy right away. They jumped right on it to save our son. He is currently going through what is called "Delayed Intensification". There is a "roadmap" they follow of procedures that has proven to be most effective. We are given a copy of the roadmap, so we are aware of what is to come up next. He is being a very brave boy and tries not to cry, but it is really hard. He takes his beloved "puppy" to all the procedures, and it consoles him when nobody else can. He sits with him when he takes his yucky tasting medicine and tries not to throw up. This is the beginning of a very long rough recovery therapy. We ask that you keep Eli in your prayers daily and we know that God will heal this wonderful angel boy that we are blessed to have in our lives.

-The Matthew's Family

Natalie Catherine Pawelski

Natalie Catherine Pawelski was an amazing child. She had an older sister, Emily, and a younger brother, Erik. It was easy to lose sight of Natalie between the boisterous and sometimes demanding Emily and the little bundle of energy known as Erik. Natalie was quiet and shy and often stayed in the background.

Natalie seemed very sweet, gentle and timid. By eighteen months of age, her personality became a concern as she rarely spoke and was slow to respond when called. The doctors thought that she might be moderately retarded. She’d stare at us with big, blue eyes and we’d wonder just who was behind those eyes. At this point, we really didn’t know Natalie at all. Unbeknownst to us, Natalie’s hearing was diminished due to constant fluid in her ears. She lived in a quiet world where the volume was always turned down. To compensate for her hearing loss, Natalie became very observant. She could read lips, body language and facial expressions. She noticed every gesture and became an expert at human behavior. She was completely tuned in to the people around her, figuring out how they felt and what they thought. This resulted in Natalie becoming the most empathetic and compassionate person I ever knew. She automatically thought of the other person before herself, something that would define all her relationships.

At age 2 years and three months, Natalie got her adenoids removed and had ear tubes put in. Within weeks, she blossomed and became a wonderful person. She remained very loving and caring, while she developed a great sense of humor and a very happy personality. All these traits made her a natural people magnet and she became everyone’s favorite. She loved to dance and sing, now that the music could be heard clearly. Natalie was her most content when surrounded by immediate and extended family. She was happy to just be part of the gang. She was the first one to join in a hug, making it a group affair. In fact, whenever Mom and Dad would hug, Natalie would race to join in, snuggling between our legs. People mattered to Natalie, much more than things. In fact, she was a child who was impossible to shop for. When asked what she wanted for her birthday, she’d say, “Nothing”. In desperation, we’d take her to the toy store and ask, “Do you want this? How about that?”, and still nothing would appeal to her. Finally, she became excited and pointed across an aisle saying, “Oh, Mama, look!” When I asked what she wanted she told me, “Look at that over there. I have that at home. I just love it.” Natalie was content with what she had, and needed nothing more than just to be loved.

Our happiness with the real and true Natalie lasted only about a year. When Natalie was three years and two months old, she began slowing down, complaining that her asthma was bothering her. In the next few weeks, she said that her hips and legs hurt. Three doctor appointments and multiple tests pointed to a severe viral infection or possibly juvenile rheumatoid arthritis. After a month of searching for answers, Natalie’s pain escalated and we took her to the emergency room. The first doctor came up with the same vague diagnosis of a virus. A second doctor came in as the shifts changed. She wasn’t satisfied and looked further, until she discovered the 10 cm tumor in Natalie’s abdomen. Natalie had stage IV neuroblastoma, with a primary tumor in her belly, and tumors in her pelvis, femur, humerus, and spine. She had cancer cell-filled fluid surrounding her heart and lungs. Within four days, she was on a ventilator with a collapsed lung. Within six days, she was permanently paralyzed.

Natalie’s neuroblastoma was the worst case that many of her hospital care takers had ever seen in their careers. It was very widespread and she had every poor prognostic factor to go with it. Not a single test came back in her favor. Poor Natalie seemed doomed. Yet, despite losing the use of her legs and losing the hair she was so determined to grow long, she remained her positive, happy self and attracted nurses, doctors and aides with her charm and smile. Once again, she was everyone’s favorite. We respect and admire everyone at our home hospital for allowing themselves to completely fall in love with Natalie. They made the choice to love despite knowing that their hearts would most likely get broken in the end. Natalie lost her brief, courageous battle with neuroblastoma after only five months on June 30, 2003, at the age of three years and nine months.

Our family struggles mightily to continue our lives without Natalie’s love and optimism. She was a powerful force that kept our family strong. She added immeasurable amounts of happiness to our days. We find her strength and grace in the face of her challenges an inspiration. Even now, she is what keeps our family going. Her life and death have inspired us to do what we can to help find a cure for childhood cancer. We visit our home hospital, encourage those who cared for Natalie in her illness, and we hold our Alex’s Lemonade Stands in her honor. To Natalie and all the childhood cancer angels and warriors: We remember you, think of you and pray for you.

-The Pawelski Family

Henry James Davis

Henry James Davis was a sweet and energetic 9 year old who was adored by his parents, John and Arlette and his older sister Emma. At the age of 3 Henry was diagnosed with neuroblastoma, a childhood cancer. During his battle with cancer, Henry was a bright light and inspiration to everyone who knew him. Two fifth graders from Our Community School in North Hills, California, where Henry was a student, wrote these words in their school newspaper:

When he was going through all of his treatments, he was always positive and never negative. His family would say “Henry’s glass is half full.” When he woke up in the hospital, Henry’s dad would ask him “How are you feeling?” Henry would say “good”. On days when Henry was feeling horrible, he would never say he felt bad. Henry’s dad would ask again “How are you feeling?”; Henry would say, “I am a little bit good.” The lesson behind the phrase, “A little bit good” is that when you think things are going really badly there is always a little bit of good in it.

His family and friends from Our Community School have honored his memory with lemonade stands and donations in his memory, raising thousands of dollars to help find a cure for others. What a fitting tribute to Henry, who showed others the meaning of finding the good in everything.

Trevor James Gresko 12/30/2002 - 3/30/2007

On December 30, 2002 our son Trevor James Gresko was born. Our hearts melted in an instant and it wasn’t long before his silly, sweet, and sensitive personality began to shine through. Life was going as good as could be when Trevor developed a mysterious black eye that didn’t seem to go away. Although Trevor was a very active and seemingly healthy little boy our anxiety grew and we headed to the ER. On February 5, 2005 at Children’s Hospital of Philadelphia, Trevor was diagnosed with Stage IV Neuroblastoma. We learned our little boy had cancer that had spread throughout his body and bones including behind both eyes. Trevor then started a very intensive treatment protocol in an attempt to rid him of Neuroblastoma.

During Treatment Trevor proved he was so much more than a cancer patient. He was a little boy with an imagination that could go on for miles. He was a pirate, a paleontologist, a sharp shooting cowboy, and a valiant big brother. He was bug wrangler, a tiger-lion-gator power ranger, a sword yielding dragon fighter, and a loving sweet son. Trevor had an almost comical passion for collecting. He could find the beauty in dirty old rocks, broken acorns, cotton balls and even stink bugs. His pockets were always stuffed full of some kind of very special treasure. Although Trevor responded very well to treatment and achieved no evidence of disease. We learned the heart breaking news that Trevor had relapsed in May of 2006.

Although there are treatment options available there is no known cure for relapsed Neuroblastoma. Trevor was put on many treatment protocols in an attempt to knock back the cancer once again but sadly all failed and Trevor passed away on March 30, 2007. His contagious giggle will echo in our hearts forever. To see Trevor’s full story click on the link to his home page. http://www.caringbridge.org/pa/trevor/

-Written by Jaclyn Gresko

Olivia Weber

On October 31, 2007 Olivia Weber was only 9 months old when she was diagnosed with Stage IV, high risk Neuroblastoma (nmyc amplified). Three weeks prior to that she had been a happy baby, crawling all over the place. She loved being in the pool with her brother Luke and her sister Ava. One day I noticed a bump over her left eye. She was crawling so I thought maybe she hit her head. Two days later she was vomiting and couldn't keep anything down. After three trips to the doctors I just new that something else was wrong. They told me she had a double ear infection and not to worry about the bump. It just didn't seem right to me. So I took her to the ER on the 22nd of October. They did a CT scan and noticed excess fluid in her brain and a mass on her left adrenal gland. Olivia was immediately transferred to All Children's Hospital in St. Petersburg, FL. Within an hour she was in surgery to get a shunt in her head to relieve the pressure. She had lesions in her brain and down her spine and both adrenal glands had masses. On November 3rd she started her first round of chemo. She got thrush so bad and mucusitis she stopped eating and we were back in the hospital.She was in and out of the hospital for the next three months with fevers, a g-tube placement, stem cell harvest, and she just completed her third round of chemo. After five we will go up to Sloan for her surgery, then back for a stem cell transplant, radiation and possible further treatment at Sloan.

Olivia has been an angel through all of this. At first she was not very fond of all the nurses coming in and out of her room. She would take her favorite blanket and put it over her head, but eventually she started to smile. She loves going for walks in her stroller. Even when we are at the hospital you can find us roaming the halls at all hours and Olivia will be smiling behind her pacifier. She loves watching Luke and Ava dance and sing, especially to High School Musical. I swear she knows the songs. If she gets fussy in the hospital I either sing them to her or find them to play on my laptop. Cancer is hard on any family but we had just moved to Florida from NJ when Olivia was only 2 months old. So here we are with a devastating diagnosis and no family around and we just left an enormous network of friends. We did find however, how wonderful people can be. Friends from NJ helping any way they can and even new friends from Florida. Olivia's godfather is even running a marathon here in Tampa for her. Olivia's both set of grandparents have taken turns staying with us and helping with our other two children. Prayers and support have gotten us through this so far.

We are only in the middle of our treatment and have such a long way to go but Alex's story gives us new found hope and courage to face every new challenge that might come our way. I look at my little baby and I am simply amazed at what she has endured so far in her little life. I make her promises everyday that as soon as she gets better I will make it up to her and give her back everything she missed. She just likes to smile and pat me on the back. You can follow Olivia's progress at www.carepages.livilulu.com.

P.S. Sadly, Olivia passed away on June 20th, 2008

Meghan Olivia Norris

On February 7, 2007, we discovered that Meghan had a tumor in the cerebellum of her brain. We discovered this due to concerns with her head size which was off the charts. We went to CHOP that evening. On Friday, February 9th, Meghan had this large tumor surgically removed by Dr. Storm. Unfortunately, the pathology eventually revealed that it was a malignant brain tumor, specifically a PNET. My world utterly collapsed with this news. A follow up MRI also revealed that there were some small dots surrounding the large tumor that was removed. These appear to be cancerous cells. Presently, Meghan has recovered well from her brain surgery. The near future holds an MRI of her spine, a spinal tap, a kidney test, a hearing test, and shortly thereafter, the commencement of chemotherapy. Meghan's case is somewhat unusual, as these tumors are generally not found in children this young. Anyways, we are still in Pediatric Intensive Care. Soon we will be transferred to the Oncology Unit. As soon as we are settled, I will post a room number and telephone number. Thanks again for all who have expressed their care and compassion. Please check the journal for any future updates.

Written by: Paul and Claire Norris

Scott Driscoll 2-23-92 to 8-31-05

Scott was born in Hartford Hospital on February 23, 1992.  He was born 7lbs 4 oz.   He was a happy baby.  He liked to play with dinosaurs and loved his blue blankey.  In September of 1994 when he was 2 ½ years old everything changed.  He had been tired and taking longer and more frequent naps.  When he awoke from those naps he would feel sick and sometimes vomit.   He wasn’t able to tell us exactly what was bothering him, but it was clear to us after a week for these symptoms that there was something really wrong.  He was diagnosed with a brain tumor after a CT scan. He was admitted to the hospital immediately.  At first we were told he would only have a few months to live.  After a second opinion, we realized that wasn’t true but a cure would be difficult.  We went to New York, Chicago and California to talk to doctors about old and new treatments that were available.   Scott underwent a dozen craniotomies over a period of 11 years.  These were followed by 6 weeks of radiation, 2 bone marrow transplants and numerous chemotherapy regimens of too many different drugs to mention.  After each one failed, we would have more surgery and try another drug regimen.  We all kept hoping that this next one would cure him. 

Through it all he never gave up.  He loved life.  He just wanted to be a normal kid, as normal as he could be.   He was a serious student and worked hard.   He always made the honor role.   He kept up with his class even though he missed classes due to treatments.  He played video games, loved to watch the Red Sox, beat his mom at chess, swim, horseback ride.  He loved to go to the movies.   He loved to collect things; beanie babies, yugio cards, Star Wars figures.    He loved his family and friends. He adored his sisters and brothers.  He wanted to grow up and be an artist. He had a great sense of color and composition. He liked to make things.   He loved to make gifts for everyone.  He would make gifts all year long for the next Christmas.

Scott died August 31st 2005 after 11 years of being in treatment.  His tumor had metastasized to his neck where the tumor was inoperable.  He died quietly at home with his entire family with him. 

Scott was a hero to our entire family.  He made us all strong.   We miss him everyday.  We know he would want us to go on and be happy and love each other.  That’s what he would have wanted.  We love you Scott, always.  

Liam James Kane 6-29-00 to 11-19-05

Liam was always the typical little boy who loved running, playing,
laughing and being silly. He had a smile that would melt your heart and
a laugh that was contagious. He continued to be a "normal",beautiful
boy throughout his entire battle with neuroblastoma, even with his
"tubies" and yucky medicines he had to take. He amazed us all with his
strength, courage, patience and trust and he still made us all laugh!
He remained a "normal"boy, probably because he didn't have the fear that
we adults owned. Liam never owned the adult concept of feeling sorry for
himself and taught many adults life lessons that we will never, ever
forget.

Liam loved dinosaurs from the time he could walk...he was sure he would
be a paleontologist and discover more bones! He also loved Power
Rangers, monster trucks, Star Wars, baseball, and every color of the
rainbow...and he loved blue gatorade ,lemonade and pretzels! He was our
"Superman" and he still is!

Liam was diagnosed with Neuroblastoma when he was 3 1/2 and after
battling this disease for 20 months....he died at home at age 5
1/2....leaving behind his little sister, Alli who is 2 years younger and
who adores him so.

These past two years have left us with a hole in our hearts and lives,
but we continue to find strength and purpose in Liam's 5 incredible
years here on earth and we will use his passion for life to help others
and to spread awareness about these horrible things that happen to our
children. Clearly, "Childhood Cancer Should be Extinct!"

Peace someday to all of you!

- HOPE FAITH COURAGE ...Kevin, Andrea and Alli Kane