When I was pregnant, they discovered at the 20 week ultrasound that Kaleb's left kidney was enlarged. So every 4 weeks or so, I had an ultrasound to measure it and be sure there was nothing else going on. At the 30 week one, it appeared to have returned to normal size and we breathed a sigh of relief.
Then I went for my biophysical profile at 36 weeks and learned not only was his left kidney enlarged again, but it appeared his right one had a mass. But, my doctor remained optimistic and we decided to do an ultrasound on the baby once born. So, at just over one week old, Kaleb had the first of many ultrasounds and everything was confirmed and remained the same: enlarged left kidney and a mass on his right. This is when we were referred to the Hospital for Sick Children in Toronto.
Sick Kids is place you never ever want to go, that you never imagine yourself going to, nor do you wish it on anybody; BUT, if your child is sick, it is the best place in the world to be. Our first appointment was scheduled for January 31st (my due date! ha!), and Kaleb was just under 3 weeks old. In the morning, he went for another ultrasound, followed by our appointment with Nephrology in the early afternoon.
Our doctor in nephrology, Dr. P, was amazing. She explained everything about his enlarged kidney, telling us what part was enlarged, by how much and what it all meant. She basically said, that unless he is getting, or has signs of urine infection, that we have nothing to worry about and that we would see her in about 3 months for follow-up. However, for the mass she needed to refer us to Oncology.
Yes, you read that right, oncology. The cancer people.
It is the stuff of nightmares and not what a new mother, actually any mother, wants to hear.
And there we were, in the middle of it, fighting back tears.
This is where the amazingness of Sick Kids comes into play. The oncology specialist that we needed to see is only there on Thursdays. We were there on a Tuesday. We came in from almost 1,000 km away. So what did they do? Told us to go grab a quick bite to eat, that the specialist would be coming down and would see us in less then an hour.
And sure enough, 30 minutes later we were meeting with Dr. B. He explained everything to us about the mass, that it was in fact a very common type called a Neuroblastoma and that it was actually located on his adrenal gland. Turns out Dr. B is somewhat of a specialist in neuroblastomas and explained that in about 98% of cases, the mass disappears on its own by the time the child turns one. Kaleb's measured 3.1 cm and the plan of action was simple: to watch it. As long as it didn't grow, we were good. We needed to do an ultrasound at our home hospital in 6 weeks, followed by another ultrasound, urine test and follow-up appointment with Dr. B in another 6 weeks.
And that is exactly what happened. Kaleb went for ultrasounds here, he went for ultrasounds in Toronto, we met with specialists in Toronto. We ended up going to Toronto a total of 7 times, to see either one of the specialists (plus an additional time to see an eye specialist - turns out everything was normal). Each time was the same, ultrasound followed by seeing the doctor. And each time the news was either the same or there was improvement: his mass was already down to 1.7 cm in May.
We started looking forward to our trips to Toronto. Yes, we needed to spend a few hours at the hospital, but each trip was 2 or 3 days and we made the most of it. When one appointment fell during Jason's March break, we went for 4 days. We went to the ROM and met up with some other moms I "met" online. I was able to meet up with them on 2 other trips as well. It was nice, to relax and chat about our babies (who were all born within 3 weeks of each other). And we went shopping. Lots and lots of shopping. But that's to be expected when our only shopping option is Wal-mart!
Our January visit with Dr. B was supposed to be about surgery options, but he was pleased with the results and wanted to wait a little longer. He wanted to see what the ultrasound and urine tests would look like at our scheduled nephrology appointment in May.
At this appointment, Dr. P said even though his kidney was still measuring as enlarged, she is no longer concerned. As long as he doesn't start getting urine infections, we go back to see her in a year. A whole year.
And then she told us the news that we had been waiting 16 months to hear: there was no mass. It was gone. Poof, presto! Just like a magic trick. As quickly as it appeared, it had disappeared.
After our appointment, we met up with some of my mom friends at Riverdale Farm. Of course they were happy for us, but it also means that we won't get to see them until next year. And that is why it is bittersweet. Yes, there is no more doctor appointments and ultrasounds, but there is also no more meeting up with friends and going to the big city for mini-getaways. And no more shopping. I'll have to do it all online now, which lets face it, is just not as fun.
But I am happy. Of course I am. My son is no longer "sick". We are done with the doctors and the ultrasounds and trying to get enough urine in one of those tiny bags. We are done with all of it, and for that I am grateful.