Our son Tyler was diagnosed three weeks ago with stage 4 neuroblastoma. He had been having stomach pains and losing some weight prior to the diagnosis, so we thought it was a food sensitivity or allergy. After a sleepless and painful night, we went to the ER, where the ultrasound and CT scan showed something abnormal. We were immediately transferred to the pediatric oncology hospital for Kaiser in Santa Clara, where after more tests and scans, it was confirmed that he has high-risk stage 4 neuroblastoma.
His tumors are quite large which makes him high risk, but he is unusual since the cancer is not in his bone marrow -- less than six percent of the neuroblastoma cases are like this.
Tyler is a fraternal twin, so this has been a huge life-changing event for us all, especially his twin brother, Alex. They have been together in every activity since birth, and now they will have separate lives. We are trying to navigate keeping Alex's life "normal" and dealing with Tyler's treatments. Tyler has had to take a break from the activities that he used to do, swimming and Brazilian jiu jitsu.
We finished our first round of chemo last week and have two weeks off until round two. The treatment protocol, if all goes well: rounds one and two of chemo (outpatient), stem cell harvest, rounds three through five of chemo (inpatient), surgery (might be two of them, due to tumor locations), round six of chemo (inpatient), stem cell transplant, radiation therapy, and lastly, immunotherapy. So we are in for the long battle of 12 to 18+ months.
Before he started chemo, we had a daytime dance party for family and friends since he cannot participate in large social events anymore. We had a great turnout of 150 people, and he had an awesome day. He has been a trooper. He likes maps, and we have asked for people to send him postcards from around the world. We've received over 300 postcards from all over in the past three weeks, ranging from Mongolia to the city we live in, as you see in the picture.
The kindness, generosity, and support of our friends, family and complete strangers is what has been sustaining us and healing our broken hearts. To say that our lives have turned upside down is an understatement, but we, along with all families affected by cancer, take it day by day, since we do not know what to expect anymore. -- Sylvia DeCourcey