My name is Ashly. My son is 2.5 years old and was diagnosed with stage 4 non-amplified neuroblastoma Dec.11 2015. We are currently in hospital completing round 5 of induction chemo with repeat scans for the first week of april and surgery tentatively booked the following week.
Our story starts just after his second birthday, he began skipping the odd meal, having constipation, and sleeping a bit more. Having brought him to our doctor no less than 3 times, she brushed off his symptoms as normal. A bit later he would develop pain just under his rib cage. Again we were turned away and told the pain was due to constipation. Upon returning from our first trip away from our son for our anniversary, our son developed a low fever and stopped eating. His lymph node in his neck swelled up. Again we went to our doc, who did bloodwork and found nothing but a slightly low rbc count. She told us it was a viral illness. After 7 days of fever and no eating i took him to the emergency room. There, doctors ignored the whole story and fixated only on the fever and not eating. They told us again it was viral and to go home. However, while in emerg we were exposed to norwalk virus. So 24 hrs later he got very sick and we were back in emergency. They finally admitted us, Dec.5th. After a few days we met a pediatrician who thought something wasnt right, and sent us for an ultrasound that would reveal an 11cm in diameter abdominal tumor inside the tiny belly of my little man. Of course, we all got Norwalk after that. We were transfered to childrens hospital. We began chemo 2 weeks later. Then, on Christmas eve, 2015, our son had to go to ICU for extreme fluid overload and a blood pressure of 180/110. After 2 weeks, double chest tubes, 2 blood pressure medication infusions, and a great nephrology team, we left icu. I tell you, if not for the nephrologists i fear our son would not have made it through that difficult time. We did round 2 chemo without incident. Round 3 (etoposide and cisplatin) was an absolute nightmare, puking every 15 minutes day and night for 72 hours and puking for 2 weeks in total. Not enough antiemetic options for young ones here in Canada. We got through it, did round 4, and now on round 5…again the dreaded combo we saw in round 3. Too soon to tell how bad it will be. We are anxious to see the scans next month to learn what kind of progress we have made, and nervous about surgery and everything that comes after. So glad to have this group as a resource moving forward!
An interesting side note: our son prior to diagnosis was experiencing sensory processing issues and was non verbal. We were on a wait list to see a pediatrician to have him evaluated for possible autism spectrum disorder when we learned of his cancer. After round 3 chemo, he began to speak! That round really cut the tumor down, as evidenced by his need for blood pressure medications cut in half, his bp elevated due to noradrenaline being released by the tumor. As well, some of the sensory issues are showing improvement. His sweet little voice is certainly helping us smile through these rough times.