On April 8, 2017 a tumor was discovered in Max's cerebellum. Max had surgery on Tuesday, April 11 at Arkansas Children's Hospital. Surgery officially started at 4:30 pm and lasted until around 9:40 pm. Max headed to ICU unit for the evening after surgery and said "I love you" to both mom and dad. Max was moved to regular room by 11 am the following morning. God is GREAT! Therapy started on Wednesday, April 10 and follow up MRI was completed on Thursday, April 11. Max stood up during therapy session on April 11th and was walking two days later! Post-Operation scans showed gross removal of the tumor and we were and still are extremely excited. On the same day, we received the preliminary biopsy results that the tumor was cancerous. Max's tumor was diagnosed as Anaplastic Ependymoma Grade 3.
Arkansas Children's Hospital helped us bridge the transfer to where our hearts led us to, St Jude. We were officially accepted to St Jude within 24 hrs of being home from the hospital on April 17th. Max had his first visit with our doctor at St Jude on April 25th. Max was enrolled in clinical trial CNS831 and randomized for 3 months of chemotherapy post radiation. Max qualified for proton therapy treatments and started radiation treatments on May 15th. Max completed radiation on June 29th and completed chemotherapy on October 2. Post treatment scans are scheduled were clean on October 25th 🙏. There were some “spots” that they wanted to monitor very closely and were from the radiation.
Early in December 2017, we noticed Max was regressing from getting stronger on his walking. We immediately went back to St Jude. It was determined the suttle changes we were seeing in Max’s physical activity were due to the side effects from the radiation. Max was treated for radiation necrosis and by the Grace of GOD, the intelligence from our wonderful doctors, and our MIGHTY Max - Max learned to walk, run, and play legos again :) What a miracle.
Since 2017, Max has graduated Kindergarten, joined taekwondo, learned to read, and is exceeding all expectations in school. During routine scans on October 21, 2019, we read the lips of Max's Oncologist. He was saying, "It's back". Broken is the only word we could say. We aren't supposed to understand the "Why", we are supposed to "Trust our Heavenly Father." Please keep our family in your prayers. Max had his second surgery on October 30, 2019 and the neurosurgeon confirmed with us another "Gross Total Resection." He even went on to say that the resection was clean and there was no need for an MRI. We were released from LeBonheur to develop our plan for another treatment of proton radiation. At the age of 7 years old, Max completed 30 proton radiation therapy treatments awake. Awake, wearing a radiation mask, and bolted to a table for approx. 15 minutes each day. Courageous!!! Our doctors at St. Jude want the best for Max. They love and adore him, just like you and me. Just like Arkansas Children's Hospital helped us connect with St. Jude in 2017 as we were given a Cancer diagnosis; St. Jude exhausted all options they had available and guided us to what we HOPE and PRAY is an earthly cure for Max's Cancer. Max is now in Colorado for an experimental treatment to wipe away any last Cancer cell.
Please pray with us that our Heavenly Father performs another miracle for our precious son.
I showed Max this picture a bit ago after we made it back home. I said, “Don’t you agree?” In his sweet soul fashion, Max said it’s missing something. Add, “for saving my life!”
Dear God, Thank You for Saving My Life. Thank you for saving Max’s life! Everyday is a blessing and we are so honored to walk with God in this journey.
We would like to share that Max’s scans are good. We had a very fast trip to St. Jude. I am so proud of our little warrior (who isn’t so little anymore). Max does so well at his appointments, making Brad and I so proud. We sure do love you, Max!!! Keep praying and believing that God’s watching over our family!
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