Cancer Stinks! – Part 1: Diagnosis
I blog because I don’t have the best memory and I love to look back at and sort of relive all the wonderful times with my family through the telling of our stories. I don’t really want to retain the emotional and physical trials of the last 3 weeks but I do think it may be important to commemorate the great story of healing and health that came from this horrible tragedy, the tremendous amount of love and support we received during this time, and Jude may also want to know why he has such a huge scar across his belly one day. So I will recall the events here.
We’ve been struggling to find a reason for Jude having chronic diarrhea for the past year. It seemed to have started when I weaned him from breast milk to cow’s milk at 1 year but it’s hard to tell because breastfed babies have diarrhea-looking poo anyhow. We started over a year ago with stool cultures to rule out parasites and bacteria. We’ve changed Jude’s diet so many times I can’t even remember. Dairy-free, lactose-free, gluten free, high fat, no juice, and many different formulas throughout the year. Nothing seemed to really make a difference. He had a colonoscopy and EGD in December that showed a very healthy GI tract but may have indicated a very mild milk lactose intolerance or allergy. So we’ve tried allergy medications and anti-diarrheals to slow down his digestion since then. After these scans the GI specialists at Children’s Mercy said he just had toddler’s diarrhea and he’d outgrow it. Although we didn’t feel totally confident in their assessment and treatment plan we learned to be okay with it, trying not to be overly suspicious and it became our new normal. With every change in diet, Jude lost a little weight and by this June at his 2 year appt our pediatrician showed great concern that he hadn’t grown in height or weight in over a year. We knew this but were attributing it to excessive diarrhea, picky diet, and intermittent vomitting. He was so concerned he wanted to admit Jude to the hospital immediately and have a semi-permanent feeding tube placed in his belly. I was really uneasy about this, wanting to find a reason for the diarrhea because I knew that was the main hindrance to growth, not how much he was taking in. We decided not to go through with the admission and feeding tube but instead get a second GI specialist’s opinion.
I initially just looked for the best GI specialist in the nation on the internet and requested a second opinion from Children’s Hospital of Philadelphia. When I learned we could spend lots of money to travel there and maybe find out that they recommended the exact treatment plan we had already been given I decided to try closer to home. KU Med has one pediatric GI specialist we decided to see. We got in within 2 weeks to Dr. Almadhoon at KU and loved everything about him. He took us seriously, disagreed with the toddler’s diarrhea diagnosis, and we made a plan to figure out what was going on with short-term follow-up. At our first appointment, Jude got his blood drawn for testing and we had belly scans ordered for less than a week. During the first scan, an ultrasound of his abdomen, a mass located behind his liver was found. After our other testing that day, the radiologist requested more pictures with the ultrasound and let us know he saw a mass. When I was watching them scan his belly they clearly showed it was not connected to the liver. Upon leaving the hospital that day I called Dr. Almadhoon’s nurse to let her know what they had told us and asked her to have the Dr. look at the films immediately and call us back. She called me back quickly and told me the Dr. would look at the results and call me back that day. Dr. Almadhoon called me back himself and confirmed what the radiologist had said, a mass behind his liver. There were two opinions, one that it arose fromt the adrenal gland (a neuroblastoma) and another that it came from the liver. We would need a CT scan to confirm this diagnosis and it couldn’t be done for a week because he had just received barium for another scan that day and it would need to be completely cleared from his system in order to get a good CT scan. The next 24 hours were some of the worst of my life. I knew what neuroblastoma was and the poor prognosis it held for many children. A poor prognosis even after torturous treatment for as long as kids could survive it. Caleb was much more calm and hopeful but I knew too much. My mind couldn’t help but picture a hairless little boy, skinny and helpless being put through horrible days and nights in the hospital all to give not even much hope of survival. I felt hopeless, panicked, and mad at God for allowing this to happen to my child. I felt guilty for not catching it sooner, or maybe somehow God was vengeful towards Jude for something I had done or not done. We prayed that God would have mercy on Jude, forgive us, increase our faith and help us to trust him in whatever we would have to walk through. As I tried to convince myself over the next 24 hours that things could still somehow turn out good, Dr. Almadhoon called us the next afternoon to suggest we go ahead and admit Jude to the hospital to start other testing that would need to be done while we waited to be able to get the CT scan. I began to panic again at his urgency and sense of seriousness over the situation. We called our pediatrician to get admitted to Children’s Mercy and agreed to wait until the morning of Wednesday, August 1st to go because they would do the CT scan that day. Another day of oscillating between panic and hopelessness and trying to tell myself that God loved us and would take care of our precious little guy. The day of the CT scan was long and difficult. Jude was not allowed to eat or drink all day and was hysterical most of the time as we sat waiting for the scan. He finally had the scan early in the afternoon and the oncologist was in our hospital room by 5pm that night to give us the horrible news that Jude had neuroblastoma, most likely stage 3 or 4.