Addi’s Story
This is ADDI and this is her story…..
On August 19, 2018 Addi was diagnosed with Neuroblastoma Stage 4 High Risk Cancer after a visit to the ER where her parents thought she had appendicitis. After numerous tests, it was found that Addi had a large tumor on the left adrenal gland that also incapsulated her left kidney, wrapped around her aorta and spread to numerous lymph nodes. The cancer had metastasized to her skull, both arms, both hips, bone marrow and a small spot on her lung. She was admitted and began chemotherapy immediately.
Addi had tumor resection after 4 months of treatment. During the very invasive and dangerous surgery, the surgeon was unable to remove the large tumor without taking her kidney as well. She lost her left kidney and adrenal gland but the surgery was successful and the surgeon felt she was able to resect all the cancer she could see. In January of 2019, after her 5th round of chemo, Addi had an MIBG scan and it was found that she had stopped responding to the chemotherapy and the remaining cancer was not shrinking in size. Her tumors were too large for her to begin the next step in the protocol which would have been stem cell transplant. The treatment plan changed and she was given stronger chemotherapy with a combination of immunotherapy.
Then the unthinkable happened once again…..Addi went into acute liver failure after her 7th round of chemo/immunotherapy and we saw Addi dying right in front of our eyes. She was rushed to PICU at Scottish Rite Hospital and was in critical condition for weeks as she began the fight for her life. Things just continued to deteriorate and all her organs began to shut down. Day by day the news got worse and she was put on BiPap Ventilator because she was unable to breathe from the excessive amount of fluid that was collapsing her lungs and shutting down all of her organs. During this time, palliative care was brought in and we almost lost her to the complications of liver toxicity that was a result of the chemo and immunotherapy treatment. An MIBG scan was performed while in the hospital and to our amazement, it showed that after all of this Addi had no evidence of disease.
She fought so hard to live and after 47 days in the hospital, although the doctors did not think she could make it at home with her extensive care, Addi was released from the hospital. She had a stomach drain, feeding tube, in a wheelchair because she had lost the ability to walk or do anything for herself. Her care was extensive but we vowed to take care of Addi and get her through this. Addi thrived at home and began to improve daily.
The family was told by her oncology team that because of her frail condition and the extent of her liver damage that she had no other options for treatment to keep her disease eradicated except for radiation. They were sure it would return but at that point, there was nothing else they could do or no other treatment they could offer to keep her from relapsing.
The doctors never expected Addi to do so well at home but in grand Addi fashion she made a miraculous recovery. As Addi’s family, we were not going to sit back and just wait for the cancer to return and let the cancer take her from us. She had fought TOO hard and went through TOO much! We began to do research and found a clinical trial study in New York at Memorial Sloan Kettering Hospital that was having great results for Neuroblastoma patients with no other options and it had no liver life effects. This would be a possibility for Addi to continue treatment and to keep her cancer from returning.
In May of 2019 Addi received 12 rounds of radiation at Emory in Atlanta then in July of 2019 Addi, mom and dad made the trip to New York. After a week of studies, Addi was accepted into Memorial Sloan Kettering’s clinical trial study of HU3f8 and began the next steps in her cancer journey on August 19, 2019……The one-year anniversary of her cancer diagnosis. Coincidence….I don’t think so! After 3 rounds of the Hu3f8 antibody treatment (she was supposed to have 5-7 rounds), Addi’s doctor told us that she could no longer receive the antibody treatment because her body had built an immunity to it and basically her body was rejecting the treatment.
Once again another set back but we continued to have faith in Addi’s healing regardless of the set backs. Her team at MSK felt that the Neuroblastoma vaccine would be the next best step for Addi. She began the year long clinical trial vaccine treatment in New York in January 2020, She received her last Neuroblastoma vaccine treatment in January 2021.
Unless she relapses, she has completed treatment for cancer. She has experienced many set backs along the way but Addi is a miracle and continues to beat all odds! We will continue to have faith as God restores her body back to complete health. We pray daily that Addi does not relapse and that she will continue to show No Evidence of Disease as her 890 days of intense treatment ended on January 23, 2021.
Addi still has many obstacles she faces as a childhood cancer survivor but she is thriving and we take one day at a time. Due to side effects from treatment Addi has suffered high pitch hearing loss and has to wear hearing aids. Addi was diagnosed with Hemochromatosis in January 2022 and began monthly treatment for that disease in February of 2022. Hemochromatosis is an iron build up in the liver and spleen caused from the many blood transfusions that Addi has received. It is a manageable disease but left untreated it can cause organ damage and possible death so we are taking care of that issue now so that there will be no long term damage going forward.
Addi has a 60-80% chance of relapsing so she will continue to be monitored closely by her team of doctors in Atlanta and in New York. Addi continues to get get MIBG full body scans, MRI and blood work every 3 months to check for reoccurrence of disease. Addi has 9 specialists that she sees regularly for the various side effects of cancer treatment. The long term side effects of treatment can be harsh but regardless of it all, she pushes forward in life with JOY and that big beautiful smile.
Addi is currently 5 years old and in kindergarten. She is happy and thriving after 3 years of intense cancer treatment. We continue to believe God in her complete healing and have ALL faith that she will not relapse and live a long, happy life! We move bravely onward as we continue to fight for Addi and believe God for her continued miracle of LIFE! She is still here with us and that is a MIRACLE…..BUT GOD!
Addi’s mother wrote a book journaling her miraculous journey with cancer. It can be purchased at this link: Addi’s Journey: A Story of Faith, Hope and Love