Curtis and Daddy at the 2006 Annual Terry Fox Run in Carleton Place.

So I've been really bad at keeping this web site up to date with the latest info on Curtis' treatment. I will try to change this going foward. It has been an eventful summer both in and out of CHEO for the Porter family, with highs and lows along the way. Curtis is now well into his hu14.18-IL2 immunotherapy treatments, having completed his third cycle a couple of weeks ago. It has been a bumpy ride at times but it has already paid dividends as Curtis' most recent scans between cycles two and three show that he is once again in remission. Words can't even begin to express the overwhelming feeling of happiness we felt hearing this news. We know the battle is far from over. Recurrent neuroblastoma is fierce and has proven far too many times how difficult it is to wipe out. Still, we are very excited that immune therapy may be the breakthrough weapon that turns the tide.

Curtis began his first cycle of hu14.18-IL2 immune therapy in July. Each cycle of this protocol consists of a four-hour hu14.18-IL2 infusion repeated every 24 hours for three days. There are also other medications given periodically to control the various symptoms that can occur including fluid retention, vomiting, diarrhea and fevers. Following three days of infusions, Curtis remains at CHEO for at least a couple more days of monitoring before being allowed to go home. The upside to all of this is that there is a three week break before having to do it all again.

Overall, the first treatment went well, meaning the symptons Curtis experienced and their severity were pretty much in line with what we were told to expect. By the time the last infusion was over, Curtis had gained close to 2.5 kg (5.5 lbs) due to fluid retention and boy did he look all puffed up. The poor guy. With the help of some albumin and lasix and a flurry of peeing, things balanced out and Curtis recovered quickly. We were eager and maybe even a little impatient to get Curtis out the door because we were planning Curtis' sixth birthday party for the next day.

Also starting immune therapy at the same time as Curtis, and sharing the room with us, was another sweet boy named Patrick Hadden. The boys had a great time together. Most of the time they were experiencing the same side effects at roughly the same time, which meant they were also feeling good at roughly the same time and were able to play with each other. Being hooked up to cardiac monitors as well as IV poles meant trips to playroom were pretty much out of the question, so having each other definitely counteracted the boredom of being in hospital for almost six days. The boys spent a lot of time playing Beyblades.

Shortly after returning home from the first cycle we headed to Nova Scotia to visit Gran and Grampy, Aunt Heather and Great Nana. It was a much needed change of scenery for all of us and the kids has a fabulous time as did Julie and I. It's a 1600 km trip (1000 miles) each way and we chose to drive down through the states. Thankfully MacKenzie managed to do quite well the entire time she was stuck in her car seat thanks to the portable DVD player and plenty of JoJo's Circus episodes to watch. Of course Curtis did well too but he has always been a great traveller. One of the highlights of the trip was Curtis learning to ride his bike without training wheels. Julie and I had a nice little retreat to PEI for a few days while Gran and Grampy enjoyed some special time with the kids. We also enjoyed a beautiful sunny day at Ruth-Anne and Tom's house by the pool, a visit to see John, Lori, Login and Sarah in Halifax and much more.

When we got back from Nova Scotia, we headed back to reality for the second round of immune therapy at CHEO. This time things got a lot tougher for Curtis with more severe fluid retention, stomach pain, nausea and vomiting. By the end of the infusions, Curtis was having some trouble getting enough oxygen due to fluid build up in his lungs. We were starting to get concerned about the possible cumulative effect of the treatments and what might happen in future cycles given the change between cycles one and two.

The third round made the second round look relatively problem free. Despite the doctors and nurses best efforts to stay on top of the various side effects, by the time the infusions were complete, Curtis ended up in ICU for a couple of days with severe fluid buildup and problems breathing. These drugs can cause severe capillary leakage which leads to a number of problems. Initially there was talk of placing a tube into Curtis' lungs to drain the fluid however before heading down that road, Curtis was given a CPAP to help his lungs stay open and we were able to shed the fluid without draining. We were so relieved to get through this period. Curtis was such a brave trooper through all of this.

By the end of cycle three it had become obvious that these drugs were having a cumulative effect on Curtis and after much discussion with the doctors it was decided that the next cycle in October will reduce the dose to 50%. As parents, it's so hard sometimes to balance the science while your heart strings are being pulled. The drugs are working but they are also becoming harder and harder for Curtis' system to handle. At what point do you stop while ensuring that he has received the greatest possible benefit.

We ended up being at CHEO for about a week and a half during the third round and the school year was already nearing the end of the second week. Curtis was quite nervous about starting school but he's feeling more comfortable as the days go by. School yard goodbyes in the morning are the hardest part. Once he is in class he is doing great.