Cookies for Kids’ Cancer Blog

Thanksgiving To Us

Filed under: childhood cancer research — The Good Cookies @ 3:41 pm November 23, 2017

It was 10 years ago this week that my husband Larry shared this message on Thanksgiving day from our family.

It is impossible to believe how much has changed in the time since – and how much remains the same. The most glaring change from that day: we are facing our 7th Thanksgiving without the physical presence of our Liam. That seems unimaginable – unfathomable – and impossible that we’ve survived this long with such broken hearts. But his spirit is with us each and every day. We feel it in the moments of meeting someone new, of discovering beauty in nature, of learning something we knew nothing about before. His spirit carries us through the darkest moments and reminds us of life’s simplest joys. We remain thankful for these gifts.

As Larry describes in the post, Ella’s joy and love continue to carry us forward as she blossoms into a young woman we are both delighted to know and proud to call our own. Her passion for horses – born out of the recommendation of a grief counselor back in 2011 to help her reckon with the loss of her brother – is a love we will follow wherever it takes, from weekend rides to national competitions.

But the thing that most strikingly remains the same ten years later is our call to action. We had no idea on that Thanksgiving 10 years ago that we would go on to launch a national non-profit, bearing the same name as that holiday cookie drive. We had no idea at that moment that our dream to sell all our cookies that holiday would exceed all expectations. And we had no idea of the support that would come from YOU – those reading this post right now – in the decade since that has led to nearly $15 million in research funding (and counting).

Despite heartbreak and loss, we remain thankful – for you, for your support, for your love of Liam and our family, and most importantly for your shared love of ALL children of the world. And, inspired by your support, we remain laser focused on doing all we can to raise awareness and funds for new research to help beat back the #1 disease killer of children in our country. But we cannot do this alone. We still ask – go to our website, still www.cookiesforkidscancer.org to send cookies OR to register to host an event this holiday season. We ask that you give in honor of all the children – both the healthy ones you know and the ones fighting for their lives in battles they shouldn’t face.

We have so much to share – so much lies ahead for the organization and for research. And we wouldn’t want to do it without you by our sides.

With gratitude and hope,

Gretchen, Larry, Ella & always in the spirit of Liam

New Clinical Trial Gives Hope to Children Battling Cancer: Cole’s Story

Filed under: childhood cancer research — The Good Cookies @ 3:41 pm September 19, 2017

Carol Winnefeld courageously shares the story of her son Cole, and his battle with neuroblastoma.

Cole was born a very happy, energetic little boy – however, all that changed when at the age of five, he was diagnosed with neuroblastoma.  Neuroblastoma is a nerve cell cancer that attacks the sympathetic nervous system, and on that April afternoon, our lives took a drastic turn from normal.

Upon diagnosis, Cole had a mass on his adrenal gland, along with lesions on his bones and bone marrow.  We started him on a standard therapy, only to disappointingly realize that it wasn’t attacking the cancer well—it might have been slowing it down, but no real progress was being made.  That’s when we realized that we needed to get him to a treatment center that specialized in his type of, hard to treat, cancer.

He had stubborn disease that never really succumbed to any therapies, it would lie dormant for months or even years, only to rear its ugly head and make us switch up treatment.  It was learning where and how to attack.  He went through at least fifteen clinical trials in his six and a half year cancer battle, but we never got a great handle on his disease.  He had multiple doses of toxic chemotherapy, radiation therapies, antibody therapies.  He had so much toxic therapies that we had to make the choice to stop one and start another, so as not to do any permanent damage to his growing body.  Just when we thought we might have found another new therapy, the disease took hold and Cole passed away at the age of eleven.  We ran out of time.  We don’t want another child to run out of time—we owe it to Cole to make sure other kids have a chance to fight this horrendous disease.

We must keep funding trials—the science is available, but the funding is not. Cole’s life might have been spared if had received the therapies that are on the horizon… but his fight won’t be in vain- please help fund kids’ cancer trials and help kids like Cole.

To learn more about the phase 1 clinical trial, funded in part by Cookies for Kids’ Cancer, available this month for kids just like Cole, click here. To donate to Cookies for Kids’ Cancer to fund research into new, innovative treatments for the #1 disease killer of kids in the U.S., click here. To send Cole’s Chocolate Chip Cookies (with FREE Shipping all September) in honor of him, click here.

(photos: Tough Cookie Cole & Cole’s Chocolate Chip Cookies)

New Clinical Trial Gives Hope to Children Battling Cancer: Aidan’s Story

Filed under: childhood cancer research,kids fighting cancer — Tags: , — The Good Cookies @ 11:04 am September 12, 2017

Michele Brown courageously shares her son’s story and his fight with neuroblastoma.

March 17, 2010 was the last day of before. Before Cancer. Before our new normal.

We had piggybacked our boys from their beds to breakfast. This was our fun way of getting them up early and off to school. Like usual, we flopped Aidan onto the couch, but this day he cried out in pain and told us that his “weak leg” hurt.

After two months of numerous visits to the pediatrician, orthopedist, rheumatologist, infectious disease doctor and emergency room, we heard the words that marked time. There was then and now, before and after. Our beautiful boy was diagnosed with Stage IV Neuroblastoma just days before his fifth birthday. The large tumor wrapped around his left kidney had already metastasized to the bones in his weak leg and three other spots before we knew anything was wrong.  When Aidan relapsed in June of 2014 we had finally exhaled. Aidan had just finished a great year in the 2nd grade. He was playing soccer and basketball. The light in his eyes, his energy, and his auburn hair were back. The first time around we knew something was wrong.  He had fevers and pain. This time we were blindsided. We believed we had beaten the odds, but instead we ended up in an even worse statistical cesspool.

The first time, Aidan endured three surgeries, seven rounds of chemotherapy, a stem-cell transplant, five rounds of immunotherapy, 12 proton radiation treatments and about 150 days in the hospital. It was hell. No words describe the pain, damage done, innocence lost, the changes in the family and sibling dynamics, the weight of every decision, the suffering, or the fear. Yet, there was a plan for treatment and cautious optimism from the medical community. So we persevered. We learned how to let others support us. We questioned but clung to our faith. We cried every day but remained determined to learn life’s lessons: make each day count, find joy and something to be grateful for, take it one day at a time. We struggled to hold onto a job, deal with the insurance companies, understand medical jargon and drug side effects, take care of big-brother Alex, help Aidan through horrific treatments, and keep ourselves from falling into a pit of despair.

The second time there was no protocol to follow. Our local children’s hospital and our compassionate doctor had nothing to offer but more radiation and a clinical trial that involved chemo treatments. They were scheduled one week on, followed by two weeks off, until they “stopped working.” There was little hope to be found anywhere. Our schedule became the continuous loop of: our family being torn apart, Aidan being sick in the hospital from treatment, coming home and helping Aidan recover, having one good week, and then back to the hospital. We were devastated. Then, we read an article about a vaccine getting orphan drug status. The Trivalent B Vaccine was being offered at Memorial Sloan Kettering Cancer Center and this promising new drug was funded by Cookies for Kids’ Cancer.

We flew back and forth to NYC to get Aidan the series of seven vaccines. It was a hassle to get to NY but we returned home thankful to have our family together and able to sleep in our own beds, under one roof, on most nights. Aidan had a sore leg and welt at the injection site but he wasn’t nauseous and not eating. After each treatment, his immune system grew stronger, instead of weaker. Best of all, we had hope. Children with cancer, their parents, their big-brothers and everyone around them need hope. New cancer drugs mean hope — hope for a longer life, a better quality of life or maybe even a cure.

We know first-hand the difference new research and new drugs can make. We live with a miracle. Aidan recently celebrated his 12th birthday. His scans remain clear. Once again, he is happy and healthy, playing basketball and soccer. He earned straight A’s in school and he plays the violin. He is amazing. We can’t let our minds think about what our lives would look like if Cookies for Kids’ Cancer hadn’t funded that vaccine. We pray we never need the future drugs they will fund.

We try our best to fight back our fears, live in the moment, and recognize that we have been given a gift and that the future is uncertain for everyone. We will spend our lives grateful to Gretchen Holt-Witt and the staff who work tirelessly to help bring new treatment options to the most innocent victims. Thank you to everyone who supports Cookies for Kids’ Cancer and their research.

If you have ever wondered how you can help or what you can do, please give to Cookies for Kids’ Cancer. You can give more families, like ours, much-needed hope.

New Clinical Trial Gives Hope to Children Battling Cancer: Christopher’s Story

Filed under: childhood cancer research — The Good Cookies @ 8:02 pm September 5, 2017

Jackie Thorne courageously shares the story of her son Christopher and his battle with neuroblastoma.

My second son Christopher was such a happy adventurous boy.  When he was five months old, in October 2011, he got really sick. Just out of nowhere my fun loving, high-energy boy was just laying down all day with a high fever and it really scared me. I took him straight to the doctor’s office where we stayed all day with them trying to figure out what was going on. Finally they decided to admit him to the hospital for observation because they just weren’t sure why his fever wasn’t coming down. It turns out he had strep that went septic. I thought this was the worst thing that I could ever experience as a mom. We were in the hospital for three weeks, in the intensive care unit for part of it, and he had to have three surgeries. Christopher was finally discharged after Halloween with orders to follow infectious disease doctors. Yay! Wonderful news, I was so ready to put that horrible ordeal behind us, little did I know what was about to happen just a few weeks later.

After we got discharged we had follow up appointments with the infectious disease doctor, just to make sure all his levels were down and he was on the mend. Well, one of his numbers that showed inflammation was going back up so the doctor ordered an ultrasound of his stomach to see. He said if he got worse to bring him back in ASAP. Over the weekend, Christopher developed a large bump on the side by his eye. It was pushing his eye, causing it to bulge forward. The day before nothing was there, and the next morning there was what looked like a large goose egg on the side of his head.

I was stunned and I rushed him to the hospital because I thought the infection was back. When he was dealing with the strep he also had cellulitis around that same eye. We got to the emergency room and they almost immediately took him for a CAT scan. Afterward, the nurses were acting funny with me and wouldn’t tell me much, aside from that they were admitting him. Eventually, somebody told me an oncologist would be meeting with us. I sat there thinking, “What does an oncologist have to do with strep? Surely he can’t have cancer on top of having some random septic strep infection. How can we have two unrelated sicknesses back to back?” I thought they were wrong and it was just the infection. Dr. Jacobsen met with us that night and the next day he had a neurosurgeon do a biopsy. Through all of this, I was in some kind of denial. I was adamant they were wrong, the biopsy would show them it’s just more strep infection, I thought.

After the surgery they called us into this small little hospital room and told us with 100% certainty that it was neuroblastoma. They told us that we had to wait for all of the other testing, but they were sure. Everything just stopped. I thought the worse was a three week hospital stay. I had no idea we were just preparing to fight for Christopher’s life shortly after. We started treatment almost immediately after the tests came back.

Christopher had six rounds of chemotherapy. He handled it like a champ and was always happy. During chemo, he played and loved on us. He was a huge mama’s boy and I wouldn’t have it any other way. He loved his family and was always happy and playful when we were with him. Of course, he charmed the nurses and other people he would come in contact with during treatment. He never let any of the treatment slow him down. To him,  it was just normal hanging out at clinic or hospital, or when taking medicine. He was too little to know any differently, so he did it with a smile.

During the last phase of the protocol he relapsed and I knew this evil cancer was never going to let my Christopher go.  He went through stronger chemo and more radiation. The doctors put him in some trials in the hopes that something would work to finally kill this evil disease that was trying to take my baby.

On January 25, 2013 just four months after he relapsed, just 14 months from original diagnosis, Christopher passed away in his sleep at home. He was still in treatment and we were waiting on scans to see if the last chemo had worked.

I wish there were more standard protocols for when a child with neuroblastoma relapses but it seemed like a lot of guesswork. We can do this or we can try this but we don’t really know which one of these will help or if it will at all. It was heartbreaking to slowly watch your child slowly slip away from you more and more and you’re fighting with everything and it’s not enough.

This is why raising awareness and money for more research is so important. Nobody should have to go through losing their child to this evil cancer. We have kept fighting, even though Christopher is gone, so that other parents don’t have to lose something as precious as their child.

(photo: Tough Cookie Christopher)

 

 

 

 

New Clinical Trial Gives Hope to Children Battling Cancer: Carter’s Story

Filed under: childhood cancer research — The Good Cookies @ 3:09 pm August 29, 2017

Ann Dang courageously shares the story of her son Carter, a.k.a Super Carter, and his battle with neuroblastoma. 

When I hear Dr. Mossé’s name, I beam. I smile and I remember the time when we had the honor to meet such an incredible doctor.  We met Dr. Mossé through our adventure with neuroblastoma. Our sweet Carter, otherwise known as SuperCarter as he was renamed by our nurses and doctors and friends, was diagnosed with high-risk neuroblastoma, stage 4, on November 11, 2011.  We were devastated when the doctors sat us down to tell us our sweet boy had cancer. No one in our families (that we knew of) had been touched by cancer. We knew friends who had gone through cancer with their families, but no one personally. We were shocked, and it took a while for us to adjust to the cancer life… to comprehend what was happening. Before we knew it, we were thrown into the world of pediatric cancer, trying to live one day at a time, one foot in front of the other, one breath at a time.

We learned to follow the protocol. And during the initial treatment plan, Carter did great. Children like him with stage 4 neuroblastoma follow the same initial protocol: a rigorous and aggressive year and a half long treatment. He never complained and smiled through every high dose chemo, surgery, stem cell transplant, radiation, and antibody treatment. He finished his initial treatment plan with no evidence of disease (NED) and we were ecstatic. We breathed a sigh of relief, and started looking ahead and thinking about the future.

But within the month, Carter woke up with a headache and asked to watch the movie Happy Feet. It was the movie that we watched during the bad days at the hospital. Tears rolled down my face, as I put the movie on, knowing my sweet boy had relapsed. Scans the next day confirmed my tears as we learned of a whole new world of pediatric cancer: the world of relapse.

In this relapse world, we found our way to Philadelphia for a second opinion, a fresh look at Carter’s cancer, and a new perspective. We were about half-way through our journey, but just felt lost. Carter was relapsing and we knew we needed more, new, and innovative treatments. Children’s Hospital of Philadelphia (CHOP) is renowned for its state of the art advances in pediatric cancer and honestly, we were hoping for a miracle. We were desperate for any treatment, any hope. We were desperate for any shred of good news.

With fierce determination and a few connections, we made it to Philly to meet Dr. Mossé. I’m still not sure how we managed to meet her, knowing she is such a busy doctor with her regular patients and ongoing research. On top of her expertise, she is such a caring doctor, taking the time to meet with families like us, who are looking for answers and desperate to find treatments to save their child. We waited patiently for our appointment, although barely moving or even taking a breath. Our journey trained us to be able to recite Carter’s medical charts and to write down dates, procedures, and medicines that he took. We even knew how to pronounce the unpronounceable words and medicines; we knew more than we ever should. We often recited his medical history without emotion at all, because any pause could bring the tears.

Then, Dr. Mossé entered the room. She was kind, light-hearted, and made us feel so at ease. She spoke so elegantly and softly, and Carter smiled at her with his big brown eyes. She was sweet and delicate when she examined him, had already looked at his X-rays before our appointment, and knew his medical history. Her suggestions for next steps were helpful, and although there’s no cure for neuroblastoma, Dr. Mossé did not make us feel defeated. Instead, she uplifted us and encouraged us… she brought us hope. And hope is a strong word for pediatric cancer families.

Dr. Mossé decided that Carter’s body needed a little break from all the high-dose chemos and treatment that he was getting. She prescribed a daily, low dose chemo for 3 month. And for 3 months, life became a little normal. We had to learn how to be normal, having forgotten what it was like. And for 3 months, we had a routine away from the hospital and clinic. Instead of 2-3 appointments a week, we were going justonce a week. It was the break we all needed. We needed to breathe. We needed to be a normal family. We needed time. In hindsight, these 3 months were the calm before the storm.

Unfortunately, Carter’s cancer returned and our family was thrown back into the world of relapse. With multiple relapses at this point, treatment options became very limited. Because of these limitations, we quickly ran out of options. Our doctors tried hard to come up with new ideas and anything that would work for our sweet boy as his body continued to fight. Eventually, his cancer took over and we lost our Carter on February 27, 2014.

There’s never a day that goes by that I don’t think about Dr. Mossé and her impact. She showed kindness to our family and gave us hope when we thought none was possible. We knew she was one of the best doctors for children battling neuroblastoma, so we were honored that she took the time to meet with us. With the way she comforted us, we wondered how she had time for conducting. We were grateful to learn that while she took time to see patients, she also conducted research and was trying to find new medicines and less toxic therapies. That was inspiring and made us appreciate her even more.

There is special meaning behind the words “hope” and “research” to a pediatric cancer family. To learn that research is underway while you are fighting is powerful. Research is happening every day, but it is slow and very expensive. There is so much more research that is needed for childhood cancer.  There is so much more that needs to be done. Many more donations are needed to make the research possible. Imagine the possibilities that new treatments could bring. Imagine a world where children do not die from pediatric cancer.

I know this is possible through the work of Cookies for Kids’ Cancer.  CFKC is funding research to help find a cure. This funding is powerful and exciting, and for families like mine who have lost their children, this is hopeful. More funding means knowing that one day soon, families will not have to say goodbye to their children. Families will have one more hug, one more laugh, one more smile and many more days with their precious children.

To learn more about the phase 1 clinical trial, funded in part by Cookies for Kids’ Cancer, available this month for kids just like Carter, click here. To donate to Cookies for Kids’ Cancer to fund research into new, innovative treatments for the #1 disease killer of kids in the U.S., click here. To send SuperCarter Cookies in honor of Carter, click here

(photos: Tough Cookie Carter)

New Clinical Trial Gives Hope to Children Battling Cancer: Lucy’s Story

Filed under: childhood cancer research — The Good Cookies @ 12:35 am August 23, 2017

Hillary Waldeisen courageously shares the story of her daughter Lucy, and her battle with neuroblastoma.

Lucy’s third round of chemo was vicious. It left her without the energy to hold her head up for more than a few minutes at a time. And this lasted for 10 days after the round ended. 10 days that felt like a lifetime. It is hard to watch your once full of life 3 year old become a shell of her former self. Pale skin, sunken eyes, bald head, scars…… I shed a thousand tears when she wasn’t looking. I remember going to the grocery store during this time and noticing all the children who were out. They were riding their bikes, running, laughing and doing all the things that kids should be doing. All the things that Lucy and 12,000 other children should have been doing. Kids should not be sitting in hospital rooms with poison pumping through their veins. Kids should not die from a disease that could be cured if we only had the funds for more research.

After Lucy finished treatment and made it through her first year of scans without cancer being detected in her body, I decided that I needed to do something to try and make a difference. I wanted to raise awareness to the fact that pediatric cancer research receives the least amount of federal funding. I wanted people to know that 12,000 children being diagnosed annually is not a disease considered “rare.” I wanted to raise money to help fund research that would hopefully save the children that I had met and whom were still fighting this ugly disease. I wanted to make all the angels proud knowing that they had inspired me and so many others into action. I wanted a cure.

I talked to fellow cancer parents about starting an organization called Lucy’s Light to raise awareness and funds for pediatric cancer. Many of them had been involved in different organizations already and had some good information for me. I received Gretchen’s name from my friend Robin who I had met while our girls were in treatment together. She told me that Gretchen had started Cookies for Kids Cancer and would be willing to offer her guidance. I then talked with my friend Carmen, another parent I met during our kids’ treatment. She told me something that made everything kind of click in my brain. She said that Gretchen had once said to her that we need to band together. Instead of having hundreds of different pediatric cancer foundations, we need to group the energy to make the biggest impact. And this totally made sense to me. I checked out the website and loved the fact that Cookies was not about one cancer or one child. I loved hearing from Gretchen that they make every dollar count. It didn’t take long for me to decide that Lucy’s Light would team up with Cookies and donate all money raised to this amazing organization. We have been supporting CFKC for over 4 years.

To learn more about the phase 1 clinical trial, funded in part by Cookies for Kids’ Cancer, available this month for kids just like Lucy, click here. To donate to Cookies for Kids’ Cancer to fund research into new, innovative treatments for the #1 disease killer of kids in the U.S., click here. To send Lucy’s Lemon Sugar Cookies in honor of Lucy, click here.

(photo: Tough Cookie Lucy)

Behind the Science: Q+A with CHOP Technician Behind Clinical Trial

Filed under: childhood cancer research — The Good Cookies @ 6:53 pm August 15, 2017

Earlier this August, we got to share the incredible story of Children’s Hospital of Philadelphia‘s Dr. Mossé, and the newly launched phase 1 clinical trial from the research of her and her team, funded in part by Cookies for Kids’ Cancer. Today, we go behind the science with Dr. Mosse’s Research Technician for a Q+A on their journey to a potentially life changing treatment.

Guest Writer: Nicole Infarinato

Research Focus:  ALK-driven neuroblastoma

Title at Children’s Hospital of Philadeplhia (CHOP):  Research Technician

Why were you interested in this study with Dr. Mosse, and what was it like to work alongside her and her team? I was interested in Dr. Mosse’s research because I wanted to do work that would benefit human health.  In college, I planned to do this by going to medical school, but I soon realized that the best way for me to contribute to medicine was through research.  Dr. Mosse is committed to advancing novel cancer therapies for children, and it was amazing to me how she bridged the space between the bench and the bedside.  When she hired me and asked me to lead this study, I felt so privileged to be part of the process.  I was just as fortunate to work with Dr. Mosse; I can only describe her as an incredible human.  She is a strong, successful, and kind female mentor – a woman in science who truly promotes other women in science.  And my lab mates became some of my closest friends and were critical to this study.  It was a definitely a team effort, and I learned so much from working with them.

How important is pre-clinical work to the overall research? Both basic and pre-clinical research are essential for making progress in understanding and treating cancer.  Pre-clinical research is exciting because it is the final stage of drug discovery that takes place in the laboratory.  We use state-of-the-art cell-based assays and animal models to recapitulate human cancer and evaluate whether a treatment is likely to work for people.  Compelling evidence must be provided in order to move forward and design a clinical trial.

Why is pediatric cancer close to your heart/What was your motivation behind this research? Although we were in a research environment, the lab was intimately linked to the Children’s Hospital of Philadelphia, and working in that setting was a constant source of motivation.  I really felt up close to the disease.  On my way to work, I walked past sick children and their families.  In the lab, we received and processed patient tissue samples.  We had an exceptional young student on our team who was a neuroblastoma survivor himself.  I even shadowed Dr. Mosse in the clinic one day, which was a deeply moving experience that I’ll never forget.  I was extremely lucky to grow up with three healthy younger siblings, and they mean everything to me – they are my best friends.  It’s heartbreaking and unfair that families are torn apart by pediatric cancer.  It’s hard to lose motivation when you know your work could potentially change that.

How did you get past potential roadblocks on the journey to this clinical trial? Research can be really frustrating at times.  The learning curve can be steep, there’s a lot of failure, and nature is usually much more complex than you anticipate.  We certainly faced times like this during the project, and it forced me to become more resilient and confident in myself.  We were ultimately successful because we worked as a team to troubleshoot and persevere.  And Dr. Mosse empowers everyone she works with, and her faith in me was deeply encouraging in the face of roadblocks.

What are your hopes for this phase I clinical trial? Dr. Mosse said something in an interview I watched before joining her lab that always stuck with me.  She talked about how conventional cancer drugs are designed for a large group of patients, but they oftentimes make a relatively small difference for them.  She wants to design targeted therapies that will make a big difference, even if for a smaller group of patients.  I hope that this clinical trial will do that for children with neuroblastoma.  Our preclinical work demonstrated that this compound has unprecedented anti-tumor activity, so we are really hoping that children will have significantly improved treatment outcomes.

What would you say to anyone who is thinking about getting involved with Cookies for Kids’ Cancer? Research like ours would not be possible without funding from organizations like Cookies for Kids’ Cancer.  I would encourage everyone to get involved in any way they can and be part of the effort to solve the enormous problem of childhood cancer.  This is a remarkable era for cancer research, and so much progress has already been made to improve therapies and outcomes.  If you contribute to Cookies for Kids’ Cancer, you are helping to expedite the process of moving new drugs from the laboratory to children in the clinic.

To read more about the phase 1 clinical trial available to children this month, click here. To donate to Cookies for Kids’ Cancer to fund more critically needed research into treatments for childhood cancer, click here.

photo: Nicole Infarinato

 

 

 

 

 

 

New Clinical Trial Gives Hope to Children Battling Cancer: Ber’s Story

Filed under: childhood cancer research,kids fighting cancer — The Good Cookies @ 1:56 pm August 8, 2017

 

Amber VanderMeer courageously shares the story of her son Ber and his fight with neuroblastoma. 

Our introduction to the world of pediatric cancer came in 2007, when our sweet and innocent son, Ber (“Bear”), was diagnosed with stage IV neuroblastoma the week of his fourth birthday.

2007 was a very memorable year for our family.  We moved into our new house in January and in June we welcomed our precious daughter Elizabeth.  In October, Ber began to sporadically complain about some aches and pains. We took him to the doctor and it was suggested that he was simply having growing pains. Toward the end of November, Ber’s energy declined. He started running a low fever and he just wasn’t himself.  Ber turned four on Monday, November 26 and on Friday, November 30 we learned that Ber had cancer.

How did this happen?  How did we go from worrying about having enough goodie bags to trying to figure out how to fight pediatric cancer and save our son’s life?  We quickly developed a treatment plan and began the process of trying to get the upper hand on the cancer cells that were attempting to take over Ber’s small body.

With Ber, we talked about “strong medicine” that would make him feel bad, but was needed to kill the “bad cells”.  We gained a new vocabulary full of words like hickman lines and neutropenia.  We became members of a new community full of parents trying to save their children too.  We learned that most of the treatment options were toxic and would likely cause other complications such as hearing loss, heart damage, and even other forms of cancer.  When they hang a bag of IV chemotherapy that is labeled “caution – carcinogen” it sends up all kinds of red flags in your head. But what else can you do when this is the standard procedure?

Over the next seven and a half years we were incredibly fortunate to put together the right combination of treatments to rid Ber’s body of cancer.  This included chemotherapy, surgery, radiation, immunotherapy, and a neuroblastoma vaccine.  Not all of the treatments would work the way we had hoped they would.  Clinical trials gave us additional treatment options and provided hope when we needed it most.

Cookies for Kids’ Cancer funded the neuroblastoma vaccine that Ber received and is dedicated to raising money to fund less toxic treatment options for pediatric cancer patients.  We are eternally grateful and want to encourage others to support this cause.

It’s so easy to send cookies to someone, host a bake sale, organize a hat day, and make others aware of the fact that sadly only 4% of the National Cancer Institute’s budget is dedicated to all types of pediatric cancer combined.  Everyone has the ability to make a difference in the lives of children fighting cancer.

“Alone we can do so little; together we can do so much.” Helen Keller

To learn more about the phase 1 clinical trial, funded in part by Cookies for Kids’ Cancer, available this month for kids just like Ber, click here. To donate to Cookies for Kids’ Cancer to fund research into new, innovative treatments for the #1 disease killer of kids in the U.S., click here.

 

Photos: Ber & his family.

From Good Cookie to Clinical Trial

How Your Support Has Helped Develop A New Treatment For Pediatric Cancer

Today is a good day. Today we are filled with hope. Because today marks the launch of a clinical trial for a new, less toxic treatment for children battling cancer. Days like these are so meaningful because it means that we are doing what we have set out to do, which is to empower and inspire Good Cookies all across the world to join us in raising funds and awareness for pediatric cancer research! We are very excited to announce the news of this phase 1 clinical trial with you today and to share more details of this important story over the next few months.

We sharing lots of information on our social media, through our email newsletter, and we will be posting a series of blog posts written by families with children who have battled or are still battling neuroblastoma, the deadly form of cancer that this new drug is designed to treat. We hope you stay tuned for these personal stories and are inspired to be the best Good Cookie you can be!

One Doctor, Years of Work, and HOPE at the Launch of a Clinical Trial.

It all starts with Yael P. Mossé, MD and her brilliant work at Children’s Hospital of Philadelphia (CHOP). Dr. Mossé is an attending physician at CHOP’s Cancer Center with a special interest in neuroblastoma. Her work led to a grant submission to Cookies for Kids’ Cancer in 2015, and approval by our Medical Advisory Board. It was the first grant Mossé received for this stage of pre-clinical work on the promising new drug, called Lorlatinib.

Six months after receiving the first grant from Cookies for Kids’ Cancer, Dr. Mossé’s results were moving ahead so rapidly that the NANT Consortium [New Approaches to Neuroblastoma Therapy] and the drug’s manufacturer, Pfizer, all began to merge interests to move toward the clinical trial phase. Alongside these developments came another $200,000 grant from Cookies for Kids’ Cancer to insure the testing and data were of the highest quality in hopes of benefitting children with neuroblastoma.The work has led to the launch of the trial’s enrollment process at several sites including Children’s Hospital of Philadelphia, and will become available at all 16 centers over the next several weeks.

The phase 1 study is enrolling patients at the following 16 centers:

UCSF School of Medicine    

Children’s Hospital Los Angeles

Cincinnati Children’s Hospital

Lucile Packard Children’s Hospital

Children’s Hospital Colorado

Children’s Hospital of Philadelphia

C. S. Mott Children’s Hospital

Cook Children’s Healthcare System

Hospital for Sick Children, Toronto, Canada  

Seattle Children’s Hospital      

Memorial Sloan-Kettering Cancer Center

Children’s Healthcare of Atlanta   

University of Chicago, Comer Children’s Hospital

Royal Marsden Hospital, London, England

Institut Curie, Paris, France

Children’s Hospital Boston, Dana-Farber Cancer Institute

There are so many Tough Cookies out there who could benefit from a new treatment such as this one. And although we cannot know if this first trial will lead to a second, or to a cure, we believe that this trial will serve as a source of hope for the children and families out there who are in the fight of their lives.

With your help, Cookies for Kid’s Cancer will continue funding this type of research and working alongside brilliant doctors like Dr. Mossé and respected research institutes like Children’s Hospital of Philadelphia, to develop new treatments for precious children who are battling this disease.

We will be sharing more details about this clinical trial, the story behind of how it all came together, and ways that you can help continue to fund these developments in pediatric cancer research across our social media channels so be sure to stay tuned! Facebook, Twitter, Instagram

The Bucket List Bake Sale

Filed under: community fundraising ideas,kids fighting cancer — Tags: , — The Good Cookies @ 9:01 pm July 11, 2017

 

Hello, Good Cookies! Today’s blog was written by fellow Good Cookie Rachel Kirkham, who put her own spin on the classic bake sale. 

The Bucket List Bake Sale

Not long after Liam Witt’s passing, I stumbled upon his mother’s blog. I was a new mother, and my heart instantly broke as I read about their journey. If possible, my heart also pieced itself back together when I saw that they were working to help kids like Liam through their charity, Cookies for Kids’ Cancer. It was from that moment on that I decided I’d follow Gretchen Witt to the ends of the earth if it meant that children like Liam could get help battling this horrible killer.

I have since met Gretchen and her family and have done anything and everything I can to help when they need it — be it volunteering at their annual Chef’s for Kids gala, or educating people about this amazing organization. The one thing that I was always too afraid to do was what Cookies for Kids’ Cancer was known for — the very roots of their foundation: a bake sale.

I am three years away from my 40th birthday, and I have managed to create a hefty bucket list of things I want to accomplish before that big day. Many of the items on my list are superficial and silly: meet Julie Andrews, run a sub 2-hour half marathon, successfully make a meal my children will eat. And some goals are lofty: plan and execute a big-city race benefiting charity, travel through Greece with my husband, take my kids to Austria. But, at the very top of my list is to finally conquer my fear of having a bake sale for Cookies for Kids’ Cancer.

Don’t ask me why I have been afraid to do it. I’m sure it is because I’m worried I will fail in some way. I don’t want to ask people for help, I don’t want to beg for donations…. blah, blah, blah. My list of excuses was miles long, but my list of reasons to do it was even longer. I knew that this year was the best time to do it because it would kick off my bucket list and my kids are finally old enough to help and truly understand the purpose. My daughter Lucy is the same age Liam was when he lost his battle to cancer. I look at her and can’t imagine my life without her, and I would be remiss if I didn’t help this cause in some small way.  

I have rallied my neighborhood pals and begged for baked goods. I have talked to city council. I have secured a location with major foot traffic. I have nailed down donations from local vendors. I have gathered a gaggle of cute kids, and even have friends and family from afar who can’t be here, but have donated to our fundraising page online. I have put myself out there, and have grown so much from this journey that I’m not sure who is winning more, me or the kids we aim to help. 

When asked what my inspiration was to add this bake sale to my bucket list, I was able to instantly answer with one person’s name: Gretchen Witt. I look and her and see hope for so many kids. I often face hard days and think of her and her strength and know that if Gretchen can get through a day, so can I. I want to do this bake sale to thank her in a small way for being such an integral part of my life. If she could do it, I could do it. 

The best part about this whole journey has been teaching my kids what it means to truly give back. I feel like they have a connection with Liam somehow and have taken in his story so deeply, and I am grateful for that. I now know why it took me so long to get the guts to have this bake sale: I needed my kids to help me be brave.

So, if you see our bake sale in New Jersey, we will be the loud ones with green balloons and orange shirts giving our hearts to Gretchen, Larry, Ella, and Liam, and everyone we have met on this journey.

– Rachel

Inspired? You can still make an online donation to Rachel’s Bucket List Bake Sale fundraising page here, OR you can register for you own bake sale or other fundraising event.

 Visit our Facebook page for more fundraising event ideas!

childhood cancer bake sale

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