Our family obviously takes raising awareness and funds for Neuroblastoma research very serious because off of Jack has gone through. It still seems like a awful dream sometimes when we start thinking and talking about the moment we found out that Jack had cancer. We knew that we wanted to do something to help and raising money for research is one of those ways. We never knew before how little funding childhood cancer really gets until we were thrown right into the thick of it. Over the past couple of years I have either met in person, over the phone, through emails or blogs many other families that had to hear the words that Zac and I did, “Your child has Neuroblastoma. There is no knows cure but we will do everything we can to make him better.”
We want to introduce you to some of these children who are fighting Neuroblastoma, those who have beat Neuroblastoma, and those who have lost their battle with Neuroblastoma. We want you to know that this doesn’t just affect our family but this affects so much more. We want to help find a cure for Jack and for all of the other children who have been affected. Unfortunately childhood cancer is a reality. If we cannot erase Neuroblastoma, we want to change that moment when a parent hears the words, “Your child has cancer”…we want it to be followed by, “we have a cure”.
Please take a moment and meet Alex. After we were on the Today Show I received an email from Alex’s Grandma and have kept in contact with Alex’s mom, Katie, since then. Here is Alex’s journey…please keep this beautiful little boy in your prayers.
Alex has always been known as fun loving, energetic, and “all boy”. On April 15, 2008 he was born without any complications. He met all of his developmental milestones early. By the time he turned one, he was known as a future linebacker by family and friends because of his toughness. He loved playing rough and had no fear in anything he did. Looking back we never thought our precious little boy could have a tumor inside him.
Two months before Alex’s 3rd birthday, he started getting tired easier. He had had a couple of ear infections that year and we assumed his change in energy level was due to another one of these. After a visit to the pediatrician, we were told he was healthy and there was nothing to be concerned about. A few days later, Alex developed a small rash on his cheek and it went away the next day. A couple days later, we noticed he had a droopy eyelid. Our gut was telling us something was not right, but we didn’t want to be those parents that overreacted and ran to the doctor with every little thing, especially since we had recently been there and they said he was fine. We decided to talk with a pharmacist about the droopy eyelid. We were told that it was most likely an allergic reaction and left the grocery store with some Claritin. Two days later his eye had completely cleared up.
We celebrated his sister’s first birthday with family in the middle of February. Alex was unusually clingy to us at her party when usually he’s all over the place playing with his cousins at these functions. Even some of our family members commented on how quiet he had been. This made us a little more concerned. A few days later, he began getting fevers and developed a subtle limp that would come and go. The fevers were worrying us. We would ask Alex if anything hurt and he would point to the middle of his forehead. We thought he had another ear infection and made another appointment with our pediatrician. The doctor told us Alex was sick with a sinus infection and prescribed an antibiotic. After several days of being on the antibiotic the fever was not going away. It would ramp-up in the evenings and be gone by morning (later we would come to find out that this was the pattern of his “tumor fever”.) After allowing adequate time for the antibiotic to run its course, we made another appointment with our pediatrician. At the pediatrician’s office they did blood work and it came back that Alex was anemic. Having the fever for so long and the anemia were concerning to our pediatrician. The doctor also did a physical exam and thought Alex’s spleen felt enlarged. We were told to go to a children’s hospital after they determined they ran all the tests they could. Later that day we ended up at Helen DeVos Children’s Hospital in Grand Rapids, Michigan.
We spent the first two days at DeVos getting numerous tests and answering the same questions by many different doctors. Mono, a severe case of the flu, rheumatoid arthritis, and leukemia were all possible illnesses we were told he could have. Test after test came back negative. While the doctors tried to figure out the puzzle, Alex began limping again. This time it was very noticeable. He also started getting the droopy eyelid back and it looked like he had a bruise over his left eye. These two symptoms, along with his blood work and fevers made the doctors think to check for neuroblastoma. On March 14, 2011 Alex’s urine test showed he had elevated levels of catecholamines, indicating he most likely had neuroblastoma.
The CT scan confirmed this and it showed a tennis ball size tumor on his left kidney by his adrenal gland. Later that evening, we met with a surgeon. He was confident he could remove the entire tumor and scheduled Alex to have surgery the next day. After a 3-hour surgery they were able to remove the whole primary tumor. We were thrilled with this news. However, a bone marrow biopsy told us that the cancer had spread to many parts of his bone marrow, making his condition stage IV.
At the end of July we completed the induction phase of the COG protocol, which is 6 rounds of chemotherapy. The next step in Alex’s treatment was a stem cell transplant. We already had Alex’s stem cells harvested, met with the Bone Marrow Transplant team, and had a date set for the middle of August to begin. Two weeks before our transplant date Alex had scans and tests. Those showed his body did not respond to chemotherapy. He was considered refractory. His bone marrow still contained 15-20% of neuroblastoma. Our oncologist took him off protocol and we were unable to have a stem cell transplant like we had planned.
We began exploring other treatment options and decided to go to Memorial Sloan-Kettering Cancer Center in New York. We talked with Dr. Kushner, one of the oncologists who specializes in neuroblastoma, and he suggested we get Alex started on some low-dose chemotherapy. Our oncologist at our local hospital and Dr. Kushner agreed that irinotecan and temozolamide would be a good combination to try. We did two cycles of the low-dose chemotherapy and then went to Sloan-Kettering to get scans and meet Dr. Kushner. Dr. Kushner recommended we try a study that involves natural killer (NK) cells. NK cells are a type of white blood cell that recognize and kill abnormal cells in the body. We were excited to give this study a try but a scheduling conflict delayed the start of the treatment. We would have to wait 4 weeks before we could begin. In the meantime we continued 2 more cycles of the low-dose chemotherapy.
In November, we were ready to begin the NK study. A week before starting we had scans and a bone marrow biopsy. The scans showed a significant decrease in Alex’s disease. Dr. Modak, the oncologist who heads up the NK study at Sloan-Kettering, decided to keep Alex on the low-dose chemotherapy, since his body was responding to it, and delay the start of the NK study. Alex’s bone marrow also showed a decrease in disease.
As of today, we have done 3 more additional rounds of irinotecan and temozolamide. Alex’s scans in January showed that his disease has remained stable since November. His bone marrow, however, is now clear! This February we’re planning on beginning the NK study with immunotherapy.
Alex has adapted well to everything and is a real trooper. He continues to amaze us with his energy level and his overall love for life. We stay very optimistic and have faith that he will beat this. We look forward to the day when a cure for this terrible disease is found.
You can read about Alex and his updates at http://www.carepages.com/carepages/MANDARINO