Time flies when you're not at the hospital and yet again, I've fallen behind in keeping the web site up to date. Back in early October, Curtis finished round four of immune therapy after only one day of treatment. He reacted to the 50% dose so quickly we were concerned what the outcome might be if we continued with any more. Based on that reaction, and his reaction in round three, everyone felt it was time to seek the advice of the study chair as to whether or not Curtis should receive any further treatments and if so at what dose. A few weeks ago we sat down with our doctors to discuss just this, and the general consensus was that Curtis was most likely experiencing an allergic reaction to the IL2, and it would not be considered safe to continue with any further treatments. Although Curtis was technically eligible for two more rounds of immune therapy, we were all relieved by this decision and we feel confident it was the right one.

Time flies when you're not at the hospital and yet again, I've fallen behind in keeping the web site up to date. Back in early October, Curtis finished round four of immune therapy after only one day of treatment. He reacted to the 50% dose so quickly we were concerned what the outcome might be if we continued with any more. Based on that reaction, and his reaction in round three, everyone felt it was time to seek the advice of the study chair as to whether or not Curtis should receive any further treatments and if so at what dose. A few weeks ago we sat down with our doctors to discuss just this, and the general consensus was that Curtis was most likely experiencing an allergic reaction to the IL2, and it would not be considered safe to continue with any further treatments. Although Curtis was technically eligible for two more rounds of immune therapy, we were all relieved by this decision and we feel confident it was the right one.

Curtis has also undergone another round of tests and scans and we are pleased to share the incredible news that all of these tests were negative and Curtis remains in remission. So at this point Curtis is officially finished treatment again and he can return to enjoying life again as a somewhat regular six year old boy. On the advice of our doctors, we have chosen to leave his port in for six months, which means monthly visits to CHEO to have it flushed (easy stuff - Curtis is a pro at this now). We will also be scheduled for tests and scans every three months for the first year he's in remission and every six months for the two years following that.

We are so thrilled that Curtis has once again reached the point of remission, but it is not lost on us that he could relapse again in the future. This isn't something we intend to dwell on, in fact we intend to live each day to the fullest, but it will always be in the back of our mind.

Thank you to everyone who has prayed for our dear little Curtis, and to all who have supported us along the way. It's been another long road and a tough battle, but we've made it through in part because of you. A special thank you once again to the determined nurses and doctors at CHEO who have never given up on Curtis. We will be forever grateful for all you've done. Thank you Anna, for making us believe Curtis could be a miracle!

After a shorter than expected stay, and only one day of treatments this time, we are now home from round 4 of immune therapy. Because Curtis retained 4 kilos of fluid over a period of three days in round 3, and as a result ended up in the ICU for two days with fluid in and around his lungs, our doctors felt it would be in Curtis' best interest to only receive a 50% dose of the hu14.18-IL2 drug this time around. We were quite anxious about this as it was obvious this drug was having a cumulative effect on his little body, and we weren't certain how this week would go. Still, with Curtis in remission, this treatment is clearly working, and the general feeling among our doctors, was the more drug he can get, the better. This was our feeling too, until this week.

After a shorter than expected stay, and only one day of treatments this time, we are now home from round 4 of immune therapy. Because Curtis retained 4 kilos of fluid over a period of three days in round 3, and as a result ended up in the ICU for two days with fluid in and around his lungs, our doctors felt it would be in Curtis' best interest to only receive a 50% dose of the hu14.18-IL2 drug this time around. We were quite anxious about this as it was obvious this drug was having a cumulative effect on his little body, and we weren't certain how this week would go. Still, with Curtis in remission, this treatment is clearly working, and the general feeling among our doctors, was the more drug he can get, the better. This was our feeling too, until this week.

During the four hour infusion on Monday morning, things seemed to be moving along quite smoothly. Curtis' blood pressure was good throughout, he had no pain or nausea, and was generally feeling quite good. It wasn't until after the infusion was over that we started to see the effects the treatment was having. It started with a full body rash, which was not something we had seen before. Benadryl was given to help control the rash, but unfortunately it also made him tired. After sleeping for about two hours, it was time for a blood pressure check, and we noticed his pressure was starting to drop. Our nurse started doing more frequent checks and at one point he dropped to 70/30. His heart rate was also on the rise, maxing out at about 150 (although once or twice it may have hit 160). Finally, his temperature was taken and he had a fever of 38.8. We were able to get his blood pressure and temperature under control within a short amount of time, however his heart rate remained high for the next twenty four hours or so. By Tuesday morning, Curtis had retained 1.4 kilos of fluid, and was not peeing very well.

Taking into account everything that happened during day "1", we all felt that it was far too risky to move forward with another day, and perhaps with any more rounds. Having made the decision to stop treatment for the time being, Curtis was monitored for the day on Tuesday and for most of today. With the sudden appearance of another rash yesterday, we were at risk of another night's stay, but when it didn't get any worse, we were able to go home.

As for any future rounds, it's safe to say that we do not feel comfortable moving forward with anything more. Our primary oncologist and case manager also feel this way, however Curtis' case is currently being discussed with the study chair. We're not certain there is anything the study chair could say to convince us to move on, but we'll certainly listen to what he has to say.

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.

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.

Dr. Johnston and the study team feel it would be beneficial to have another bone marrow biopsy. Curtis is having this test done today. Results will be back in a week, and if positive, Curtis will again be eligible for the study and would be scheduled to begin July 10th. Should the results come back negative, he will be closely monitored and retested in one month.

We have so many conflicted feelings about all of this. One moment, a huge sense of relief and excitement that the disease has not spread and Curtis can go back to enjoying his life. The next moment, fear and impatience kick in. When will it come back? Why can't we just get moving on immune therapy and give Curtis the best chance he has to be cured now?!

This is now the third time that we've been down the dark path of possible disease progression, and somehow, Curtis just refuses to give in to it. He's such a fighter, and has an inner strength beyond our wildest imagination. We feel truly blessed to be his parents!!

Just a few days ago we shared the wonderful news on Curtis' test results. Last Friday morning however, we were given some devastating news that changed everything. Our worst fear has come true. The cancer has returned. The bone marrow sample taken from the right side of his hip is showing new signs of disease. The MIBG (specifically to test for the presence of neuroblastoma), MRI and bone scans all looked fantastic. But in our excitement to share the news, we forgot about the final bone marrow results that had yet to be received. We learned the results of that last test in what was supposed to be our end of treament meeting with our oncologist Friday morning.

It's a painful reminder of how hideous neuroblastoma is, preying on young innocent children, often going into hiding during remission only to resurface again later even more agressively. We are deeply saddened by this and what may lie ahead but we also have reason to be hopeful. The doctors want to begin an immune therapy that shows a lot of promise. They are extremely optimistic that Curtis is the ideal candidate for this study as his disease is very minimal at this point and has not spread. We're also optimistic and believe strongly in Curtis being able to fight this disease yet again.

It was heartbreaking inside giving the news to Curtis. He has gone through so much. To make matters more difficult, Friday was to be a very special day for Curtis at school. He was one of the recipients of the Positive People Awards for personal responsibility at Arklan. We are so proud of him. Julie and I felt that we could not take away this special day for him and did not tell him until the following day. He was obviously saddened by the news initially but being the amazingly strong boy he is, he recovered quickly and is taking the positive attitude he always has taken in the past.

So we will head down the road of treatment once again, thankful that this was detected early and that we have an amazing hospital like CHEO that we can depend on to give Curtis the absolute best treatment and care anyone could ask for. The exact timing of things still need to be ironed out but I'm sure things will move quickly.

On a related note, the CHEO telethon which took place over the weekend, raised almost 5 millions dollars. Always emotional to watch the televised event, but especially so this year given our history with CHEO and the road ahead.

These test weeks Curtis has to endure each quarter are very draining. Curtis is such a trooper while the doctors and nurses poke and run scans on him over a 4 to 5 day period. Being put to sleep for an MRI is probably the most difficult part for Curtis (and for mommy and daddy too) and it gets harder for Curtis each time because there is a such a long break between scans. But it's over for now until we do it all again in three months. It really is a small price to pay to watch over this terrible cancer and keep Curtis healthy.

Outside of CHEO, which thankfully is most days, Curtis is enjoying life to the fullest. He loves senior kindergarten and is doing extremely well. His reading skills are exceptional. He had a special new friend Marisol who is a sweet girl that is in Curtis' class and also lives just across the street from us. The two are inseparatable. We've also enjoyed recent visits from Gran & Grampy and Aunt Heather from Nova Scotia.

Back in March, the whole family took a wish trip to visit the Bay Area in California granted by the Children's Wish Foundation. We had an amazing time visiting old friends and doing a whole bunch of activities that Curtis wanted to do.

I guess that's about it for now. Thanks to all of those thoughtful and caring people who have been following Curtis or just discovered our web site somehow and took the time to write us and ask about Curtis. It means a lot to us.

We took Curtis to see his first NHL game last night at the Corel Centre (soon to be named Scotiabank Place) to see the Sens take on the Sharks. Going into the game, Curtis said he was going to be cheering for the Sharks but after a trip to the Sensations store before the game and a new Sens jersey he suddenly began a huge Sens fan. The Sens played horribly but Curtis still had a blast.

From the moment we arrived at CHEO, we knew that Curtis wasn’t just another patient, but rather an extension of the “CHEO family”, and soon they became an extension of ours. Over the many months of Curtis’ treatment, we grew to depend on these amazing people for the support and comfort that at times only they could provide. They genuinely care for the families they treat, and for that we will be forever grateful.

Thank you to the entire staff on 4 North and in the MDU. These are all the wonderful people who we became most familiar with throughout our time at CHEO. Thank you also to the many other nurses and doctors that we met along the way, in places like nuclear medicine, surgery, radiation, and the MRI staff. Thank you to Dr. Bass, for successfully removing Curtis’ entire tumor; to Dr. Johnston (our primary oncologist), for never giving up hope; and to Wendy and Marilyn for always being there whenever we needed a friend to talk to. Thank you to Molly the Clown, for always putting a smile on Curtis’ face, and for the many hours of magic tricks he so thoroughly enjoyed. Thank you to Brenda, for all the races to the elevator and over to radiation, and the many “tears” goodbye (Curtis loved that). Finally, a special thank you to Anna, without whom, we might not have made it. You did more for us than you will ever know.

Everyone’s kindness has meant the world to our family, and while we are thrilled to have Curtis in remission and finished his treatments, we will certainly miss seeing all of you! You will forever hold a special place in our hearts and you will never be forgotten.

We also found out yesterday the answer to whether Curtis would be undergoing immune therapy as part of a randomized research study we have placed Curtis on. The study compares children receiving a promising new immune therapy along with a drug called 13-cis-retinoic acid to children receiving 13-cis-retinoic acid only. Children who are in remission at this point in treatment are randomized to either arm of the study. Curtis was randomly selected to receive 13-cis-retinoic acid only, which means Curtis will have no more hospital stays and once his broviac line is removed on Friday, he will only have monthly check-ups at CHEO. 13-cis-retinoic acid will continue for six months, and Curtis will also need to have a series of scans every three months for the first year.

We will savor this time in our lives and make the most of every moment. Curtis has been given a chance to be a kid again without interruption and we are so thankful.

Curtis has been undergoing radiation treatment at the Ottawa General Hospital during the past couple of weeks and has now completed nine of the twelve sessions. He has been very brave and extremely cooperative laying still for what must seem like forever to him. The actual radiation itself lasts only a couple of minutes but with prep time visits are about fifteen minutes long. The technicians are great with Curtis and do everything they can to make him feel comfortable which is so great. They went to the trouble of drawing him a Darth Vader mask to keep track of his radiation progress (each day he gets a sticker to put on the mask) plus they give him other nice suprises along the way. The other day, Curtis met up with Molly the clown from CHEO. Molly wanted to come with us to radiation and mentioned that she would have something "special" for him to ride over in. Turns out she had a great little skooter for him to motor over on as the walk is quite far for a little guy! Curtis thoroughly enjoyed himself. In fact, Curtis had so much fun on the skooter that it's now in our trunk ready for each and every visit to radiation. Thanks Molly!

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Great news! Curtis was released from Sick Kids Hospital last Saturday around 9:00 pm and we arrived home late Sunday afternoon. We are so thrilled to be back home with Curtis after spending a total of four weeks in Toronto. Thank you to everyone for all the support. The list is long but I want to say a very special thanks to my mom who flew up from Nova Scotia to help us take care of Curtis and MacKenzie in Toronto. I really don't know how we would have done it without you mom. Also thanks to Bev and our awesome neighbors for looking after our house while we were gone.

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Great news! Curtis was released from Sick Kids Hospital last Saturday around 9:00 pm and we arrived home late Sunday afternoon. We are so thrilled to be back home with Curtis after spending a total of four weeks in Toronto. Thank you to everyone for all the support. The list is long but I want to say a very special thanks to my mom who flew up from Nova Scotia to help us take care of Curtis and MacKenzie in Toronto. I really don't know how we would have done it without you mom. Also thanks to Bev and our awesome neighbors for looking after our house while we were gone.

Our trip to the CN Tower prior to Curtis' admission to the hospital

Sick Kids Hospital

Inside the Atrium at Sick Kids (Curtis was on the 8th floor at the very top of this picture)

Minto Plaza where we stayed (two blocks from hospital)

Our view from the 9th floor and inside apartment

Our star Curtis

Last but not least, little "Miss Mac"

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