"In January 2015 I had just joined the Neely Pediatric Hematology Oncology team as the Practice Manager. From the first moment I entered the clinic I was impressed with the welcoming environment and the warm and playful colors that were quite inviting. I witnessed everyday how happy our patients were to come to clinic as they would get everyone’s attention from all our staff and they got to play too, starting at the waiting area, in their exam rooms, and with our Child Life specialists.
You could tell how comfortable and supported their parents felt as they had the support of not only the providers but of the admin staff that would work diligently to coordinate their multiple appointments, of our nurses, of our Social Worker, and of our Parent Consultant.
Just 6 months later, I was about to experience what other Pedi Hem-Onc parents experience.
On July 10, 2015, I had taken a couple of days off to spend a long weekend with my family. While at the beach and as I was applying sun screen to my daughter Olivia, I noticed some tiny red spots on her legs. I thought it was probably due to the sun exposure so I made sure that the girls would apply sun screen frequently. A couple of hours later as I was helping her to apply sunscreen again, I noticed that the red spots had covered her legs and spreading on her thighs and arms. I started to get worried, so we all left the beach and went home.
On Monday when I got back to work, I approached one of our providers and told her about the tiny red spots on Olivia’s body. She suggested that Olivia sees her primary care and get some lab work. The first set of lab work was within normal limits. Olivia was feeling a bit fatigued that week and the tiny red spots had spread all over her body. One of the Nurse practitioners suggested bringing Olivia in and repeating her blood work.
Her labs showed that her platelets were very low and one of the providers, Dr. Erin Barthel, informed us that Olivia had a blood disorder and they needed to do a bone marrow biopsy. My world just crashed. She went from being completely healthy to possibly having Leukemia.
How did that happen, and why, what caused it? Thousands of questions and thoughts were crossing my mind.
Olivia had her biopsy which showed bone marrow failure - Aplastic Anemia and she would need blood transfusions until a donor would become available for a stem cell transplant.
On July 17, 2015 our journey began. Olivia was 20 years old when she got diagnosed, a premed college student that just had started summer classes that week. She handled the news better than me, staying calm, asking questions and assuring me that everything would be fine and we would win this.
Olivia met with the Neely Pediatric Hematology Oncology team and we went through the treatment plan, the blood transfusions that she would need, or procedures, medications and their side effects, hospital admission, chemotherapy and long term side effects, transplant and long term prognosis. We were devastated and still in shock. I think we were in that stage till the transplant day. Our life changed forever. You take life for granted, but at that moment all your struggles and everything else we had been through, were nothing compared to what we were facing and she was going through.
Nothing mattered anymore, but her health. We had to take it day by day. “One day at a time” became the worst phrase I had heard. I did not wanted to hear that, I wanted to know what her life would be after transplant, would she be able to live a long healthy life after this? But we had to settle to one day at a time.
Her name got placed immediately on the bone marrow registry. She had many other tests, lab works every other day, and my youngest daughter, Alex, had to be tested to check is she would be a match for her sister. After many tests we still did not know what caused her bone marrow to fail. Olivia had to stop summer classes, quit her job and later on to quit school. She needed to come to clinic multiple times, as her blood counts were dropping and starting to feel the symptoms of the disease. She needed platelets transfusion and blood transfusion to keep her at a healthy base line. Her immune system was becoming more vulnerable and she had her first admission at the Neely Pediatric Bone Marrow Transplant Unit after spiking a fever.
I was pleasantly surprised that Neely Pediatric Bone Marrow Transplant was a state of art unit. It was a five-bed unit and all rooms were spacious and comfortable with all the necessary amenities to make her stay more pleasant. I was impressed with the Parents Lounge where parents would sleep over and visiting family and friends can hung out without disturbing the patients.
Who knew that Neely Pediatric Bone Marrow Transplant Unit would become our home away from home on the upcoming months?
Olivia got admitted twice before her transplant to the Neely Pediatric Bone Marrow Transplant Unit.
We finally got Alex’s test results and we got the best news we had ever heard: Alex was a match. Dr. Jason Law laid out the transplant plan, and as scary as it seemed, it gave us hope.
On August 28, 2015 Olivia got admitted to the Neely Pediatric Bone Marrow Transplant Unit to start her conditioning treatment before the transplant. A day before her transplant, Alex had the peripheral blood stem cell harvest which lasted about 3 hours. Alex was just next door and I was able to be with both of them at the same time. The doctors were able to collect more than enough stem cells for Olivia’s transplant.
Olivia’s Transplant was on September 2, 2015. I remember us all being very nervous and hopeful at the same time. The first two weeks were tough, as she was having after chemo and transplant symptoms. Due to the chemotherapy Olivia’s hair thinned out and that was very tough to watch and made us realize that what she is going though is real. To support Olivia her dad shaved his head too and they would joke about it. She started slowly to feel better and her counts started to recover. I stayed with Olivia during her previous admissions and during transplant. I would sleep in one of the Parents rooms and on the couch next to her. She loved sitting on the couch and play different games with me or her sister as it made her feel like she was at home and not being stuck on her bed. Being able to be with her throughout this experience meant the world to me. I would sleep on a chair or on the floor if I needed to, but having the ability to rest while she was resting, gave me the strength I needed to focus on her.
Our family and friends would visit us and were all impressed with the care Olivia received there and with the unit and how clean and inviting it was. The Neely Pediatric Bone Marrow Transplant Unit nurses were amazing, becoming our family members that will try everything possible to keep Olivia happy and engaged. They would spend time with her watching shows and concerts together while taking care of her; Child Life was coming throughout the day to play with her and keep her occupied. Even housekeeping was so caring and dedicated; John, our housekeeper, knew the importance of a clean and sanitized environment for immune compromised patients and that gave me as a parent the peace of mind knowing that my child was receiving a well-rounded care.
Olivia was discharged on September 25, 2015 and that’s where her post-transplant care begun. We continued to have multiple visits, lab works, infusions and she would spent long hours in the clinic for a full year. She even spent and celebrated her 21st birthday in the clinic having infusion. After a long year of treatment she was slowly able to go back to her life.
Words cannot describe how thankful and grateful we are of the care and support she received during this experience.
The Neely Pediatric Hematology Oncology team was already my family but now I was seeing and appreciating everything form a different perspective. I saw them in action, helping my daughter, me and the rest of the family adjust to a new normal. They stood by our side, answering our hundreds of questions, being a shoulder to cry on and lean on and most of all comforting Olivia as she was going through emotional distress as well.
Four years later, Olivia is now a disease free college student that is able to follow her dreams and make a difference in people’s lives, trying to give back the support that she profusely received.
We are so thankful to The Cam Neely Foundation that has supported both The Neely Pediatric Bone Marrow Transplant Unit and The Neely Pediatric Hematology Oncology clinic, providing a welcoming, healing and comfortable environment for patient and their families that are already going through stressful times."
The Vera Family
"The Boston Marathon has been a goal of mine since I was young. My mother really got me into running. I still remember going for my first run with her and thinking to myself, “How in the world am I going to be able to run 26.2 miles, if I could barely run two?” But I was determined.
Every year, we would watch runners cross the finish line on Boylston Street. One year stuck out for me in particularly. I watched a man who was a double amputee cross the finish line carrying the American flag. It gave me chills to watch and made me tear up to see him receive his medal. I wanted the chance to run amongst heroes like him.
I thought I’d have my whole life to train and run the marathon. When my mom was diagnosed with pancreatic cancer, my timeline shortened. Although I wasn’t able to complete it before she passed away, I wanted to do it within five years after the fact. I didn’t want the fire I had to die. Once I graduated college, I started working towards my goal and finally met it this year. One month short of my mother’s five year anniversary, I crossed Boylston street representing the Cam Neely Foundation.
When my mom was sick, all I wanted to do was take the cancer away. I wanted her to be comfortable and pain free. I couldn’t do that for her, but I had the opportunity to do that for others. That’s why I decided to run for a charity. As I was looking for teams to apply to, the Cam Neely Foundation really stuck out. Not only could my fundraising efforts go towards cancer research, but it could also help those with the cost and discomfort of treatment. The Neely House was what made the foundation standout from other charitable organizations. It was what I wish I could’ve given my mom while she was sick.
Running the marathon was the easy part. Meeting my fundraising goal was the true challenge. I am still in disbelief that as a first time charity runner, I raised $14,000. It’s one thing to run the marathon, but it’s another to know you helped someone by doing it. I hope I helped quite a few by fundraising. If I could do it all over, I would. And if I can do it all over, I will. Running with a purpose will always keep me connected to my mother."
"The most impressive thing about The Neely House now is the updated design and renovation. Paulina Neely really made what was already an amazing facility into a truly one of a kind home for patient comfort and care. I was just blown away at how much time and thought went into making the place even better than it had been. Not to mention how expansive it's has become in terms of covering medical concerns. But the thing that really had me in tears - for all the right reasons - was the glass wall displaying Jack Neely's poem - which he wrote in loving memory of Cam's mom - his grandmother. Cam, Ava and Paulina didn't tell me about it in advance so when we walked up to it - and I read it - I just could not believe what I was seeing. That poem not only sums up how Jack felt about his grandmother - in a way it sums up how the entire Neely family has felt about the patients who come into the loving embrace of The Neely House. It speaks to the entire mission Cam and Paulina had in mind when this whole thing started out. I'll never forget the moment I first read it. And I'm eternally proud and privileged to be associated with this cause."
- Denis Leary
"In the fall of 2013 I was seeking a comedy show as an event my girlfriends and I could attend for a fun break, a night of lightness and laughter. I came across the Comics come Home show which proved to be the best plan for our girls night out. My dearest friends and I planned a two day weekend to Boston. We had time together for sightseeing, rest and relaxation, dining and an evening laughing our asses off. While my ribs hurt for several days afterwards, my heart and soul experienced respite and rebooting it desperately needed.
In January of 2013 my precious son Nolan was born full term. On day 2 of his life we witnessed a seizure and he was struggling to nurse. He was transported to a NICU at one of the children’s hospital in CT. An MRI confirmed that Nolan had suffered a Hypoxic Injury (loss of oxygen to the brain) at or around birth. His little body was so fragile and weak. The Doctors would tell us that the damaged areas of his brain controlled major functions like breathing, body temperature regulation, motor abilities etc. What they described shattered the hopes and dreams I envisioned of my strong Nolan growing up to play professional Hockey or Becoming a champion fisherman/outdoorsman.
My new hope became his survival.
His inability to coordinate sucking and swallowing became the reason and need for surgery to have a Gastrostomy feeding tube (G-Tube) placed. Oral feeding was too dangerous posing choking risks.
Nolan faced complications as they arose. Unmanaged seizures, numerous poking and prodding for bloodwork and genetic testing. He would present with patterns of a debilitating seizure disorder that had an life expectancy of 2 years.
Needless to say the nearly 3 month NICU stay was difficult and brought emotional and logistical challenges as my husband was still juggling work, we had long commutes to and from the hospital, still needing to care for our soon be 3 year old daughter.
Mid March he was home for the first time. During these few months Nolan had several visits to the ER, many back to back DR appointments, and breathing issues.
At the end of May we found out he had vocal cord paralysis. Five days later Nolan had to return to the hospital to have surgery for a tracheotomy and would require a month stay. It seemed our sweet child would have more obstacles to hurdle.
The second homecoming in July brought with it new challenges and uncertainties. Nolan needed In-home nursing. While we needed the professional help it didn’t allow for privacy. It changed our family structure and dynamics.
We faced financial struggles and the Great Unknown. Will he be ok? Will We Be Ok? Our worries about Nolan’s survival got tangled up and became my survival mode.
While attending the show in November 2013 we learned about the Cam Neely foundation and the Neely house. The Inspirations behind the housing and families it had touched.
We were proud to be supporting The Comics Come Home. This event not only raised funds for projects helping people face difficult times without further financial burdens, it provided an outlet for me, at a time when life was full of struggles, to laugh and enjoy needed time with friends.
This event continues to be important for our getaways. We were excited to see it grow from a college arena to the TD Arena.
I am grateful and blessed to say that my beautiful Nolan is now 7. The age appropriate milestones he missed along the way are gradually being met. His delayed smile became the brightest, love filled smile imaginable.
We learned Nolan did not have the original diagnosed seizure disorder. Our challenges are great and we still face many uncertainties. We are however full of Joy and amazement as Nolan continues to overcome adversity. We hold strong to our faith and hope as he tackles each day.
"Completing the 2020 Virtual Boston Marathon with the Cam Neely Foundation was my way of completing a goal in the only way this year allowed it. Aside from the race being canceled and moved to virtual due to the COVID19 pandemic, this year has been a trying one for my family as well. Finishing this race was one of the few things I personally had control over and I was determined to do it for all of those who cannot. I signed up to run the Boston Marathon last fall with my younger sister, Jessica. In 2018, on the week of her 30th birthday, Jess was diagnosed with stage 4 colon cancer. Despite rounds of radiation, chemo, and multiple surgeries Jess continued working, running her equestrian business, JH Eventing, out of her farm in Sutton, MA and for the winter months in Aiken, SC. During the winter she would fly back to Boston from Aiken on Monday nights, go to chemo on Tuesday morning, and fly back to Aiken that evening with her chemo pack in tow. Her "no excuses, get it done" attitude inspires me and has given me strength to push on through hard times in life as well.
Despite Jess' own health struggles, she is determined to help others in similar situations. Therefore, fundraising for the Cam Neely Foundation as we trained to run the Boston Marathon was an easy decision for us in terms of the charity we most wanted to run with.
The fact that our parents have an apartment in Brighton, MA has been incredibly helpful during Jess' treatments. It provides Jess a place to stay close to the hospital when she has early or multi-day appointments and allows my parents and I a place to stay nearby for Jess' in-patient stays. Most people do not have this type of support. Therefore, we all appreciate the role The Neely House plays for other cancer patients and their families whom are receiving cancer treatment, serving as a home-away-from-home accommodation on the Tufts Medical Campus. From first hand experience, we know how helpful it is to have a place to call home close to cancer treatment centers, and fully support the Cam Neely Foundation in this, and their entire mission.
Training for the Boston Marathon in April was going well. Jess ran 3 half marathons in preparation, two of them she and I were able to do together, and had a long run of over 18-miles completed! We were just 2 long-runs away from tapering for the marathon in April when it was originally rescheduled for September. Unfortunately in May, we received some bad news. Cancer had spread to Jess' lungs, resulting in an intensive surgery in June to remove half of her lung. The long recovery required meant that she would not be able to run the 2020 Boston Marathon on the September date. Therefore, I knew it was up to me to finish what we started and complete this virtual marathon for both of us and the Cam Neely Foundation. Instead of running from Hopkinton to Boston, I completed my virtual Boston Marathon as a trail marathon in Salt Lake City, UT."
- Tanya Halliday
“I was incredibly grateful to have had the opportunity to run the Boston Marathon for "The Cam Neely Foundation team. Both my dad and my father-in-law, who was like my second dad, died after courageous fights with cancer. Boosting The Cam Neely Foundation’s ability to serve and provide world class hospitality to those battling cancer, as well as their sweet families, was a cause that stirred passion and excitement in me. What a joy and honor to have the opportunity to play a small role in a cause that significantly touches the lives of so many deserving people when they need hope and comfort the most.”
- JT Robinson
"After a lot of marathons, friends often ask – why do you do this? For a lot of years it was simply “the challenge”. And while I still enjoy the personal challenge of it today, I have learned that through running I also have the ability to drive change and make a difference in people’s lives – actually do something that matters – albeit it in a small way.
While Covid delayed the Boston Marathon in 2020 and otherwise put many things on “hold” in our day to day lives, the fight against cancer for individuals and families did not take a break. It is a relentless disease and one that only respects perseverance. We have all likely had it touch our lives and lives of those close to us. It is too often a race against time and I cannot think of a tougher race to run. The Cam Neely Foundation started its marathon and has done a lot – but there is still a long way to go and they need (and appreciate) our help.
We all have an ability to impact change. It was said that “It is the size of one's will which determines success”. The Cam Neely Foundation has a “big will” and has used it to raise over $30 million since 1995. The Foundation has come a long way but still has a long way to go. I am thankful to be a participant in a small part of their journey."
- Richard Fish
“The new Marlene Neely Center for Digestive Health will allow us to provide one convenient, accessible location for all GI services including clinical exams, screening colonoscopies and complex GI procedures like Endoscopic Retrograde Cholangio-pancreatography (ERCP). Currently we see many thousands of patients per year in our GI department. With this new space, we’ll be able to help even more people, with more efficiency in a beautiful, soothing environment that maximizes patient privacy and comfort.”
- Joel Weinstock, MD, Chief of the Division of Gastroenterology at Tufts Medical Center
"As a partner of The Boston Bruins and with Cam’s longtime connection to the city, it’s natural for The Sports Hub to sign on to support The Cam Neely Foundation. Participating in the annual Comics Come Home event, our goal has been to help spread the word about what the Foundation does and to raise awareness on donating. It’s safe to say almost everyone these days is somehow affected by cancer and, as a station, we are proud to support The Cam Neely Foundation and their efforts to make life a little bit easier for cancer patients and their families."
- Rick Radzik, Programming Director, 98.5 The Sports Hub
"Towards the end of February 2010, our 8 month old son was not feeling well. We thought maybe it was because we were introducing new foods to him as well as formula. After being seen at his Primary MD office, we were sent to a local GI clinic which was part of Tufts Children’s Hospital (then it was Floating Hospital for Children). That doctor recommended an upper GI test to see if we could figure out what was wrong. On Friday March 5, 2010 we went to Tufts Medical center for the test. We had another appointment with neurology that day as well because we were concerned that Alexander had suddenly stopped bearing weight on his legs. It ended up being a long day. While we were waiting for neurology, the GI doctor called us. He said the scan wasn’t definitive. That it could be “intestinal malrotation”, but he wanted to get an ultrasound to be sure. It was too late that day for it or to even schedule it so he sent us home. He told us that if Alexander got worse or continued to throw up we should come back to the hospital and go to the ER. Alexander was pretty quiet all weekend. On Monday March 8th, he threw up in the morning. Over the weekend we had looked up intestinal malrotation, and saw that it might require surgery, so we packed a little overnight bag and headed to Tufts. My aunt (Alexander’s Godmother) was visiting in town, so she came to be with my husband and myself as my mom was not able to join because she wasn’t able to drive that day due to a recent fall. The doctors gave him some fluids, took and x-ray and blood work and eventually sent us for an ultrasound. A little while the doctor came into the room. She said “I am sorry, but the ultrasound showed a mass in Alexander’s abdomen. Oncology will be down to speak with you”. We were blown away! How could our 8 month old baby have cancer? Babies don’t get cancer! We would soon find out how untrue that statement was!
We were soon transported to the 6th floor. We were brought to the The Neely Pediatric Bone Marrow Transplant Unit. As we went through the double doors and into a room #5 my head was spinning. There was a lot of commotion. They put Alexander into a crib and immediately set up some toys for him to play with. We were showed around the unit – the kitchen were we could get water and ice, then the family area. We were given a key to one of the bedrooms and told we could sleep there at night if we wanted it. The next few hours were a whirlwind that included Alexander being sedated for an MRI. My mom was able to get a ride to the hospital and join us. Over the next few days we were hear words like 'Bone Scan, MIBG Scan, and Ports'. Lots of information being tossed at us all at once—so much to process. While it was all very overwhelming, there was something very comforting about being on the Pedi BMT. It was a small area with just 5 patients. I knew we would be getting very good attention there. I spent the first couple of nights on the sofa/bed in Alexander’s room. But that was not the most restful, and the nurses were checking in on Alexander often. I decided I would sleep in the parent room instead. The room there provided a bed, a television, dresser phone and a chair to sit in. It was a perfect place to get away from the noise of the hospital room. A place where I could get a quiets night sleep or take a nap. The back area also had a little kitchenette with a microwave, refrigerator and dishwasher. There was not a lot of dishes, so once we were asked to make a “wish list” that would be given to a generous family. We put down dishes and we got them. We wanted to wash them and when we opened the dishwasher we discovered we were going to be the first to use it! The instruction manual was still attached to the inside!
Alexander was discharged after a couple of weeks on March 25th. We started to make visits to the Neely Pediatric Oncology/Hematology clinic. At the time, it was in a temporary location as it was being renovated to what it is today. Alexander was admitted again on April 8th for his second round of chemo – this time to room #3. It was suppose to just be for a couple of nights. However due to a number of different things, he didn’t get out until May 14th! During this time though, Alexander went from being a very sad and sick little boy, to being a happy boy – despite being sick. He loved being in room #3 because it had a view of the nurses station! He was able to see all of the excitement going by during the day. During this long visit, he was one of only 3 children on the floor. All of them were under the age of 1 ! Again – who would have thought that babies get cancer? It was during this long stay, that my husband and I started to get tired of hospital food, and decided to bring in a crock pot to cook a meal to share! It was a hit. We would do this several times during our stay.
After this admission, Alexander had good weeks and not so good weeks. He had many admissions to the hospital. We were almost always put on the BMT. We did get admitted to the 7th floor a few times. While the care was good, we missed the comforts of the BMT – especially the parent area! Alexander also spend many nights in the PICU. Again, we missed the BMT! It really did become our home away from home. In total, Alexander spent 247 days at Tufts Children’s Hospital.
In January 2011, Alexander underwent an autologous stem cell transplant (his own stem cells). This time we were admitted to Room 1. Everything went well for his transplant, and we were discharged on February 24th. We did not know it then, but that was the last time we would be admitted to Pedi BMT.
On March 31, Alexander had a surgery to remove more of his tumor. Because of the size and nature of his tumor, we went to Boston Children’s hospital to a surgeon who had a lot of experience in this. After a long 16 hour surgery, he came back to his ICU room. Sadly, in the Morning of April 1, he took a turn for the worse, and they were not able to save him. He went home to Heaven at 12:40pm that day.
Since Alexander’s death, we have been giving back to the hospital that took such good care of him during his time there! We started with little things here and there and have done bigger things now. One thing about being in the hospital is that you get the munchies! Sometimes it is during the day, sometimes it is in the middle of the night. We didn’t always have snacks with us, and the vending machine spending can grow quickly. A few years ago, we started to send snacks to the hospital for the families in the Pedi BMT and Clinic. At first it was just now and again, but now we send them monthly. I have heard from the family consultant, how much the families appreciate these snacks. One of the most vivid memories I have is on Christmas Morning. A nurse knocked on my door and told me not to order breakfast because another family had brought it in for us! It was the family of a young man who had passed away. I was so touched that they would think of us during this time! Alexander spent almost every holiday in the hospital. One of those being 4th of July. While it isn’t a major holiday, and not one with gifts or themed chocolate, we started to send money in to provide the families with a pizza party. We have also sent in Easter Dinner for the families. We know how much these small things can mean to a family during such a difficult time.
Having a child fighting cancer, is no walk in the park. But, having the Neely Pedi BMT and the Neely clinic, certainly made that time a little more bearable."
- Nancy Marie Whipple