Hepatoblastoma Research Update
November 2019 - We have some exciting news to share! Last week we took a huge step forward as parents involved in pediatric cancer research. Our first scientific article was recently published; leading researchers closer to a treatment option for high-risk patients like Addie. For us it validates years of personal involvement & grass roots fundraising by family-led organizations. This accomplishment stands as a beacon for the power of our Hepatoblastoma community, made possible by doctors and scientists around the globe who were driven forward by families and their dedicated supporters. Tremendous thanks go out to the hundreds of donors (sometimes as little as $5!) who generously enabled the logistics, imagination and ingenuity of this milestone. You are the heroes of this story! Click on the icon below for the summary article.
May 2019 – We are in the last phase of testing to get the first ever drug to clinical trial specifically for kids with Hepatoblastoma. We hope to have this trial proposal to the Children’s Oncology Group by the end of 2019! Cody is currently in Prague at an international (SIOP) conference collaborating on worldwide initiatives. In addition, we recently launched The Hepatoblastoma Resource Network, Hepatoblastoma.org, for families and are teaming up to collect rare pediatric cancer data globally. We are also excited to announce a Hepatoblastoma parent conference coming in early 2020. More details and registration coming this summer! We feel honored to be able to make a difference for this community and can’t thank you enough for your steadfast support.
November 2018 - Last week we were grateful to be part of an inspiring conference in Cincinnati, Ohio led by Dr. James Geller, a world-renowned clinical expert on relapse and refractory Hepatoblastoma. We were honored to present on our experience at the Children's Cancer Therapy Development Institute (cc-TDI) nanocourse this summer, as well as make powerful connections with other hepatoblastoma families who have endured an unimaginable road. Some children represented are survivors due to revolutionary and creative treatments by Dr. Geller, and some of us were there with only our child’s memory to drive us. The goal of the conference was to discuss the best way to bring the world together to fight relapse and refractory hepatoblastoma. Before this conference we had only met three other families in person who suffered through pediatric liver cancer. This was an amazing personal connection for us and invigorated our passion to help find a cure.
We were extremely fortunate to have cc-TDI's very own, Dr. Charles Keller, there to collaborate efforts moving forward as a community to create a database registry for relapsed and refractory disease. Many of the topics discussed built on what we took away from the nanocourse. We look forward to acting as servant leaders for this determined parent network as we continue to develop valuable resources and research for our hepatoblastoma families. As always, thank you for your continued support as we take on the most difficult problems to try to bring less toxic and survivable treatments to children with Hepatoblastoma!
September 2018 - Last month we spent a week at the cc-TDI nanocourse learning from top researchers in the world specializing in the liver, Hepatoblastoma, and other rare pediatric cancers. We were able to see first hand how drugs get screened and tested for clinical trial. We met extraordinary people and feel honored to be part of a group of cancer parents working together to support cc-TDI and their mission to make childhood cancer universally survivable. Cc-TDI takes on the most difficult problems and has had remarkable success. We are working diligently to get a unique drug combination into clinical trial for children with Hepatoblastoma next year. Our biologist is moving rapidly and running the most extensive tests to provide more options for children in the near future. It is such a privilege to be an integral part this work and we can’t say ‘Thank You’ enough to our steadfast supporters who are making Hepatoblastoma research a true reality at cc-TDI.
July 2018 - We had another great visit with our partners at cc-TDI in Oregon last week. We were able to leave the kids with grandparents for a few days and really focus on the revolutionary work going on. The other cherished gift was meeting another hepatoblastoma family in person. We all come from such different places. However, as they told their personal and compelling story, it sometimes felt like looking in a mirror. Similar drugs, similar comments from doctors, and the same gut-wrenching feelings of grief and loss that genuinely connect pediatric cancer families. We shared all of the work that is going on in the lab and had amazing personal sessions from Samuel, Dina and Noah--some of the die-hard researchers at cc-TDI. We also got to share our stories with many of the summer interns working at the lab. We hope that they learn and understand our passion for this work and choose to make positive impacts on the world they are growing into.
We were reminded on this trip (especially after hearing about newly available trial drugs for hepatoblastoma) that none of the drugs in use today were developed specifically for Addie's cancer. Cisplatin, for example, is a common first attempt chemo against hepatoblastoma. It was discovered in the 19th century and used medically in the late 1970s with good efficacy on adult cancers not related to the liver. Not one single drug has ever been developed which targets metastatic or relapsed Hepatoblastoma patients. That is why cc-TDI is so inspiring! They are going after the hard problems and testing drugs specifically on Hepatoblastoma cell lines derived from tumor tissue donation. They are working diligently to help the kids who currently have zero options left. This trip was an exciting precursor to our one-week course next month at the lab where we will host experts from around the world to share, collaborate and bond against this vicious disease. We are so excited to spend our vacation time with people who share our passion for finding answers and hope for future generations.
If you are reading this and wondering how you can take part, please reach out to us. We receive so many important donations, from family, friends, and those who have directly felt the effects of cancer. The surprising, inspirational gifts don't stop there; people who knew Addie, read about her story, or just felt compelled to pay it forward have made a world of difference! We are truly humbled by birthday parties that include donation options in lieu of gifts, corporate matching donations, lemonade stands, golf tournaments, candle sales and other impactful donations both large and small. Addie's memory, and the tributes to her life, don't have dollar signs associated with them. People have donated blood and platelets in her memory--because she received those gifts so many times in her life. We feel every one of those gifts, and we hope that you feel Addie's spirit flow through your heart when you take the time to honor her.
October 2017 - We had another inspiring and highly educational visit to Children’s Cancer Therapy Development Institute (cc-TDI) in Beaverton, Oregon. Christina’s parents got a special tour and got to see with their own eyes some of the amazing advances towards making childhood cancer universally survivable. There are some new faces at the lab, working on exciting new projects, plus we got to catch up with some of our favorites, like Dr. Charles Keller, Samuel, Noah, Ganz and Andy. Our tireless team of experts who work in the lab bring a magnificent variety of skills and backgrounds to complement their passion for improving the lives of children affected by cancer.
We spent a good portion of our time talking about how we want to focus fundraising and awareness in 2018. One of the most unique parts of working with cc-TDI is the earnest inclusion of our perspective, passion and curiosities as parents of a cancer warrior. They have a picture of Addie on the wall and everyone is familiar with our family story.
There are many projects we hope to influence in the next year, but we know that our involvement with the lab will last for many more years to come. Dr. Keller does a great job talking about realistic goals to scale more projects and bring about a cure even faster. Our top projects of interest are still in the works and we hope to make big gains over the next 12 months.
1) Hire a full-time biologist. All of the clinical testing going on in the lab against hepatoblastoma samples takes dedicated people and machinery. Employing a biologist for the sole purpose of studying hepatoblastoma cell lines and xenografts will get drugs to clinical trials at a quickened pace.
2) Send off 50 samples for genome testing. This year, we made great progress in gathering samples of high-risk tissue for metastasized hepatoblastoma from around the world. cc-TDI is now the largest repository of critical research samples, and each sample is prepared for very cost-effective genomic mapping. This testing (before drug experimentation) will yield the most valuable information about finding a cure and helping children affected on a patient-by-patient basis.
3) Develop an anonymized “Genomic Intelligence” project which will house every piece of background and treatment information about patients who suffered from hepatoblastoma, and eventually other cancers. This will represent a paradigm shift in the way doctors treat pediatric cancer and potentially all other diseases. We will work fervently in 2018 to develop corporate sponsorship for this long-term goal, while still leaving all the power in the hands of researchers, parents and ultimately the kids who suffer from these poorly addressed diseases.
We can’t say thank you enough for all of the heart and soul given to keep Addie’s memory alive and to make her battle against cancer not happen in vain. We absolutely love our relationship with the people of cc-TDI and look forward to helping parents and kids with cancer for years to come.
March 2017 - Our visit to Children's Cancer Therapy Development Institute in Portland confirmed what we had hoped for. In fact it made us even more hopeful. Addie’s spirit is alive and doing quite well in the lab and we believe one day these efforts will help helpatoblastoma to be universally survivable. We actually saw the nitrogen tank where Addie’s tissue is so carefully preserved for testing.
The single most impressive feature of the lab is a committed connection to families affected by rare childhood cancers. There are large photos all around the lab of children and families; all staff members believe in a common long-term solution. This lab specializes in solving the hard problems and welcomes each challenge with humble innovation. Dr. Charles Keller, founder of cc-TDI, has assembled an accomplished team of experts, with varying backgrounds, all of which are passionate about the urgency of curing childhood cancer. They asked us what we wanted to focus on first with Addie’s Research: metastasis, chemo-resistance, or the difficultly/rarity of why hepatoblastoma can spread to the brain. It’s hard to decide and we trust their vision, but the fact that they value us as involved parents is comforting and significant.
This non-profit is revolutionizing cost-saving measures to stretch each and every donation to its max. Their creative and innovative ways to solve problems should serve as a catalyst revolutionizing laboratories around the globe. They have recently started testing agents on inexpensive quail eggs to narrow the field of effective treatments before attempting expensive mouse models. A quail egg has a similar vascular structure to a mammal and they can watch the cancer metastasize in the embryo (under a microscope) and record it with a camera. A quail egg takes just 7 days to reveal results and costs only 35 cents, while a mouse model can take up to a year and cost $25K. A donation of just $20 buys 57 quail eggs for further testing! We can assure you that your donations will make a world of difference in the effort to forge ahead with hepatoblastoma research.
We will continue to educate parents, labs and doctors on finding a cure and not just a treatment. Chemotherapy, radiation and surgery are the main way to currently fight pediatric cancer, but cc-TDI is rapidly researching alternative targeted therapies that provide a cure without the lifetime of effects from traditional treatment. For the near-term, cc-TDI will help doctors connect patients with the most effective treatments in lieu of trial by error. So far, they have already identified two promising agents for hepatoblastoma that require further testing. All we can say now is that Addie is home with a new family that cares deeply for her story and the plight of other children in similar circumstances. It was extremely inspirational to meet the team at cc-TDI and we are excited for the future.