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Alex's Story

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Alex was shifted to a cycle of combination immunotherapy-chemotherapy.  Shortly thereafter, discussions between Alex's oncology team and a renowned pediatric oncology group, specializing in neuroblastoma, led him to begin an intense chemotherapy known as 'High Dose-ICE'.  Two cycles of therapy this intense proved to be encouraging after an MRI of his brain showed 'marked improvement'Albeit, with some acute damage to his remaining kidney, permanent, mild hearing loss, and multiple stays in the hospital between cycles due to neutropenic fever, and mucositis--a dreaded side effect of some chemotherapies. To balance these risks and benefits, his doctor next recommended Alex resume immuno-chemotherapy cycles, concurrent with weekly chemo delivered directly to the leptomeninges by way of a spinal tap. 

 

After two cycles of immunotherapy and numerous injections of intrathecal chemotherapy, Alex’s cancer was stable according to scans.  He was afforded a few weeks free of treatment while staging studies were completed and plans finalized for him to join a clinical trial aimed to treat leptomeningeal neuroblastoma. During the summer of quarantine, Alex was all smiles and motion as he enjoyed every moment of those weeks of uninterrupted,quality time at home. Each day his vocabulary and repertoire of dance moves grew. He was surrounded by our family, and he was loving life. We all watched him in awe, without a trace of doubt, that he would soon celebrate his 2nd birthday, welcome his new baby sibling into our lives, and coast through the holidays to see what 2021 would bring. 

 

On July 10, 2020 Alex was admitted to the hospital with a central line infection.  A series of events followed that yet again, changed our lives forever.  His central line had to be removed. A few days later, an attempt to place a PICC line was unsuccessful.  The line did not go where they intended and bedside scans revealed that not only was his line out of place, it had knotted.  This was unprecedented.  His physicians had never seen this in their careers, only rare cases in the literature.  Miraculously, the cardiology team was able to not only 'un-knot,' but salvage this line so that Alex would be able to use it for upcoming chemotherapy. It was a long stay, accompanied by many procedures, but thankfully Alex was able to leave his hospital room and meet his brothers and sister by the fountain in front of the hospital for short breaks from the monotony of the hospital room. This was the first time in a long time, due to the pandemic, that his siblings were able to see him during the course of his admission. 

On Sunday, July 19, Alex began to have seizures.  He was never the same.  Scans showed that the leptomeningeal disease had progressed, dramatically. After many discussions with his physicians, it became clear that the most loving decision was to end treatment and go home. The most difficult decision a parent could make, but it was done out of love and compassion for Alex. We did not want to subject him to anymore chemotherapy as we could see he was in no condition to continue this battle. He needed to be with us. Loved and held continuously, free of the confines of the hospital setting which no longer was able to offer treatment that would result in curing his cancer.  

 

On July 23, Alex left the hospital for the last time. He was reunited at home with his 4 older siblings who had not seen him in weeks and were shaken by a fear that he may not come home. He spent his remaining days in our home surrounded by his grandparents and our family.  We left the hospital with an expectation of "days to weeks." Alex wasstrong, a hero to the end. A full month passed, and on August 25, 2020 Alex left this world. Ending his battle with cancer. He was no longer in pain or suffering.  One year to the day of his diagnosis, we laid Alex to rest on August 29, 2020

 

Throughout Alex’s journey he fought with grace and dignity.  With the strength, courage, and heart of a lion. He smiled through the pain and with the greatest attitude. Not once did his strength waiver. He continued to fight until his final moments.  Alex is truly an inspiration. His story puts perspective on life.  He showed our family, and the many people that supported him and us, that the small things in life make the biggest difference.  Being grateful for every moment spent with those you love Smiling through struggle.  Loving life through pain.  Staying strong, AlexStrong.  

 

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ALEX

came into this world on October 9, 2018.  He was perfect. Our family felt complete. In 10 months, 

he grew into a Chubby infant with the brightestblue eyes, sweet red hair, a love for music and moving, and a smile that stole the hearts of many!  

On August 29, 2019 we took him to his pediatrician, his belly was swollen and our usually happy boy had become fussy and lethargic. We thought he may have had a bowel obstruction. We were wrong. Alex was rushed to the Emergency Department where a bedside x-ray was performed.  It was negative.  Bowel obstruction was not the culprit.  Next, an ultrasound was performed, and that is the first time our hearts sank.  They found a large mass originating from Alex’s right kidney. Cancer. We were devastated.

 

There were two possibilities: Wilm’s tumor, which is treatable and most children have good outcomes, or Neuroblastoma, a renegade cancer in the sense that there are various different types and outcomes. As more tests were done, It became clear that it was Neuroblastoma.  Alex was diagnosed with Stage 4 Neuroblastoma.  He went to the OR for a biopsy and to have a central line placed and chemotherapy commenced.   

In the weeks following, a DNA analysis of his tumor confirmed the worst.  Alex's diagnosis changed to High Risk Stage 4 NeuroblastomaHis tumor had MYCN gene amplification.  The cards were stacking against us, against Alex. Despite this, our family stayed strong in spirit and faith as did Alex. The initial chemo cycles shrank the tumor in his belly and widened his smile. 

 

Alex underwent induction chemotherapy which included five more inpatient cycles. Every three weeks, we broke from our busy routine at home where Alex enjoyed the everyday chaos of his 4 older siblings, and instead spent 3-5 days in the hospital with Mom and Dad trading shifts to be with him and home with his brothers and sister. Alex was taking everything in stride and looked great. We were optimistic that his cancer was responding well to treatment.  A small miracle, disguised as a respiratory infection, delayed Alex's surgery scheduled for December 23rd, and allowed us to spend Christmas at home, all of us together.

 

Early January came.  Alex underwent an eight-hour surgery to meticulously remove the remaining tumor in his belly, which still engulfed major blood vessels. He also lost his right kidney that had been ravaged by the initial tumor. He recovered from surgery like a superhero, discharging 5 days earlier than anticipated.  We got to cheer our Kansas City Chiefs through a playoff win, and the following week Alex started his final cycle of chemo before he would undergo staging in preparation to proceed to tandem autologous bone marrow transplants. 

 

A full set of scans were conducted. Again, we were faced with heart-wrenching news.  Although Alex was clinically doing well, his cancer was worse.  He was diagnosed with leptomeningeal disease. The cancer had spread and coated his spinal cord and exterior of his brain.  An ominous sign at this point in the course of Neuroblastoma treatment.  Our hearts sank again.  Hopes of a transplant, and eventual remission, were distant. Alex was now in a class of his own, no treatment protocols applied.