Dave's birthday fundraiser in memory of Lee and in honor of Hannah
After the devastating loss of his grandson, Lee, to Acute Lymphoblastic Leukemia and watching his granddaughter, Hannah, fight the same battle as an infant, Dave decided to forgo a typical birthday this year in favor of using the milestone to raise awareness and critical dollars for immunotherapy treatment at Children's Minnesota.
He challenges you to help him celebrate his birthday by making a donation in honor of his grandchildren. At least $55,000 is needed to fund the start of an immunotherapy program using T cells at Children's. Had this treatment been available to Lee, he might be here today. For kids like Hannah who face potential relapse, there's still hope with immunotherapy. Read below to learn more about Lee and Hannah and make sure to check out the photo gallery at the bottom of the page to view beautiful photos of his sweet grandchildren.
Lee Theodossiades graduated with a degree in Finance from Florida State University in May 2009 at 21. He had a vibrant personality and was always the life of the party. While going on various job interviews as a recent college graduate, he got the most devastating news of all. In July 2009, Lee was diagnosed with Acute Lymphoblastic Leukemia (ALL). He began chemotherapy treatments, and the doctors quickly realized the cancer was more aggressive than they originally anticipated. Lee was quickly transferred to the Mayo Clinic to begin a very intense chemotherapy regiment to prepare for his first bone marrow transplant. He was able to achieve remission from the ALL and had his first allogenic stem cell transplant in December 2009. After being in the hospital for the better part of 100 days, Lee began feeling great. His faith in God began to strengthen and he began a very inspirational walk with Jesus Christ. He pledged his heart to God and was Baptized shortly thereafter. Lee lived the next two years cancer free. He spent his time visiting other cancer patients, praying with the sick and being the leader of a cancer survivor ministry through church.
In December 2011, Lee began to experience night sweats and pain in his legs. He quickly realized that the unimaginable had happened; his ALL had relapsed. As soon as the bone marrow test confirmed his fears, he received the strongest chemotherapy available. The doctors were very honest with our family regarding Lee’s chances of survival after relapsing so soon. Regardless, Lee was ready to fight. After undergoing three rounds of chemotherapy, Lee was again in remission and prepped for his second allogenic stem cell transplant. In April 2011, Lee received the second selfless gift he could never repay. Someone he didn’t know gave him the gift of cancer-free bone marrow! Lee stayed in and out of the hospital over the next 100 days and then his life went back to normal again. He had a girlfriend, a part-time job and traveled all over the country supporting FSU football! In June 2012, after just finding out he was going to be an uncle, the doctors informed Lee that he had relapsed again and there were no more treatment options for him in Arizona. So then, the doctors at Mayo began researching clinical trials taking place in the United States, and as a family, we decided to travel to MD Anderson in Houston, Texas, for Lee to begin a naturopathic clinical trial. Lee was able to live cancer free, take a once in a life time trip to Israel to walk where Jesus did and become an Uncle before he lost his battle with cancer and was called home on May 31, 2013.
Modern medicine failed Lee. There were no other options currently approved in the United States to treat his ALL. We often wonder what may have happened if immunotherapy with CAR-T cells was available for Lee. Please support this worthy cause because it truly can be life changing for children and families all over the world. With that, we leave you with Lee’s life scripture, Acts 20:24, “But I do not account my life of any value nor as precious to myself, if only I may finish my course and the ministry that I received from the Lord Jesus, to testify to the gospel of the grace of God.”
On August 15, 2012, our sweet baby Hannah, just three-months-old, was diagnosed with Infant Acute Lymphoblastic Leukemia with the MLL gene rearranged.
During treatment, Hannah spent over 190 days at Children’s Minnesota in Minneapolis on both the oncology floor and in intensive care, plus dozens of days in the clinic. As part of her intense protocol, she received 15 different types of intravenous, spinal, intramuscular, and oral chemotherapy. At the end of treatment in August of 2014, she had been on chemotherapy for 88 percent of her life.
By the grace of God, Hannah has grown into a cheerful, delightful, preschooler. We are thankful for her life! With help from family and friends; our prayer team; physical, occupational, music, and speech therapists; and the dedicated and amazing oncology team at Minneapolis Children's; Hannah is catching up on developmental milestones and we are full of sober hope for her future.
The type of cancer that Hannah fought has one of the lowest survival rates of all pediatric leukemias. Very young babies, like Hannah, face the worst prognosis. Long-term-survival without a relapse is approximately 30 percent. Hannah has been fortunate and continues in remission today.
Due to the connectivity of the internet, our family has been privileged to connect with many other families of children with Infant ALL. We have been heartbroken to see that the high rate of relapse among these babies continues. We have wept with the loss of so many of these precious children who have faced leukemia for a second or third time with no effective treatments.
A light on the horizon for all of us who have children with leukemia has been the emergence of trials using a type of immunotherapy called CAR-T. This technology, which engineers a patient’s own T-cells to selectively target and fight leukemia using the power of the immune system seems futuristic, but in fact, we know families whose children are alive today because of CAR-T. These children were not responding well to current leukemia treatments, and their families were in the unimaginable position of choosing hospice or the opportunity to face the unknowns of this new immunotherapy called CAR-T. These early trials have shown CAR-T to be effective in chemo-resistant leukemias when other therapy has failed, and lives are being saved. We know the families of nearly a dozen children, now toddlers and pre-schoolers and older kids as well, who are alive and thriving today due to these early CAR-T pediatric trials – but access to these trials has been limited and that needs to change now.
Every day counts. The lives of precious children are literally in the balance.
We are THRILLED to hear that Children’s Minnesota has the opportunity to expand access to this new, innovative, and promising type of treatment.
Please help us bring CAR-T therapy to children facing the most desperate cases of relapsed pediatric leukemia by donating today.
Kevin and Sara Shull
P.S. Originally, we ended our letter here, but I was reminded of a note that Lee sent to me when his leukemia returned for the last time, a few months before he went to be with the Lord.
“…I pray for you, Kevin, Hannah and your kids every night. I pray specifically that she will not only be healed, but that God will give her an incredible testimony to take to the world to glorify Him; because what a better family of Christ to come such a miraculous testimony of faith, trust, healing, and perseverance.”
Another time, Lee told me that he had a hope that one day he and Hannah would tell their stories together and glorify God through doing so.
Perhaps this is that time – the time that Lee’s illness and Hannah’s illness together can bring glory to God and also do a great good work in this world… to help advance the cure for the very disease that the two of them suffered. We invite all of you to help us. – Sara
Lee welcomes baby nephew Landon, who is now 3.
Hannah in Intensive Care on the day of her diagnosis, August 15th, 2012. She was three months old. She was intubated for 48 hours while they filtered her blood to physically remove leukemia cells from her blood, give her multiple blood products and other IV products to balance her blood chemistry and stabilize her condition. Her white blood cell count was reduced from over 1 million to 100,000 during this process. 99 percent of her circulating white cells were leukemia blasts. (Normal white cell counts are 5,000 to 15,000 with zero blasts). We were told told she was in critical condition and not to leave the hospital floor.
Lee receives a bone marrow transplant in 2011.
Hannah at the hospital when she was 8-months-old. This was her fifth month of treatment.
Lee dips in to the Dead Sea during a trip to Israel in 2012.
Hannah one year into treatment. 15-months-old! This was at the end of a three week chemo hold for low blood cell counts. She feels great on this day! The next day she re-entered the hospital for her final high dose chemotherapy doses before starting a maintenance year of lower dose chemo. Her final hospitalization was three weeks long. In total she spent 190 days inpatient at Children's over the first 13 months of treatment, plus dozens of days in the clinic and many more with home care nurses. Her treatment was two years long, including daily lower dose chemo give at home the final year.
Lee's sister Amanda gets married in 2010. What a beautiful family!
Hannah had her port until a year after treatment since she still needed it for monthly IVIG for low immunity and for phlebotomy for iron overboard. This was her last port access the day it was surgically removed. She is three years and three months old in this picture, three years out from diagnosis. (You can see the scar on her tummy from her feeding tube - many ask what that is when they see it - that is a permanent scar and she thinks of it as her second belly button).
Lee visits Holy Land in 2012.
Hannah has ten brothers and sisters! She loves them so much and they love her! Everyone has a very special relationship with Hannah. Here she is with them - just a couple months left of treatment to go in the Summer of 2014. She is two years old in this picture.
Lee takes in golf in Scottsdale with his dad in 2013.
Hannah, with Mom and Dad and big sister Grace at the Shine Bright Bash fundraiser for the Cancer and Blood Disorders Program at Children’s Minnesota and the Kids Cancer Fund. September 10, 2016
Hannah is doing great at 4 years old. She is learning her letters and beginning to read simple words. She loves to write and draw. She also loves to play outside and enjoyed swimming this summer (note the goggles!).
Lee and Brooke, poolside.
Hannah loves music. She asks to play Uke-ee-lake-ee every day! July 2016.
Lee and his brother-in-law Ricky attend the Fiesta Bowl in Arizona in 2012.
Learning to play one string at a time. July 2016
Lee explores the Sea of Galilee in 2012.
Hannah at Give Kids the World on her Make a Wish trip in August of 2016.