November 23, 2006
Treatment over for now
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!
October 04, 2006
Round Four Cut Short
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.
September 25, 2006
Terry Fox Run
Curtis and Daddy at the 2006 Annual Terry Fox Run in Carleton Place.
September 24, 2006
Latest News
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.
June 22, 2006
Well things aren't moving so quickly with the immune therapy afterall and at this point we're not sure what will happen next. In order to officially enroll Curtis on the immune therapy study, he needed to have another round of scans as one of the criteria for the study is that tests results be no older than three weeks. Curtis had those tests last week. Here's the thing -- ALL of his tests, including the bone marrow biopsy which tested positive for disease just a few weeks ago, came back negative! This appears to be great news on the surface. The study doctors consider Curtis to be in "remission" again and won't accept him into the study as a result. The reality is however, that a small amount of disease was found in his body just a few weeks ago and we can't breath easy knowing that.
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!!
June 05, 2006
It's Back
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.
May 31, 2006
Update
It's been quite a while since I wrote an update. Sorry about that! Life has been keeping us very busy but in a good way. Curtis is doing fantastic and I guess we've been savoring that. The updates slipped as a result. Anyway, today is a particularly good day to give an update. We just heard back from CHEO regarding Curtis's quarterly tests that took place last week and everything came back looking great.
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.
January 13, 2006
Curtis' First NHL Game
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.
December 19, 2005
Thank you CHEO
With the exception of 13-cis-retinoic acid, a drug we give Curtis at home, and the once a month visits to CHEO for blood work, our dear little Curtis has finally finished his treatment. So, with no other hospital stays in our immediate future, we wanted to take a moment to thank the wonderful group of people at CHEO who worked so hard at making Curtis’ treatment go as smoothly as possible.
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.
December 06, 2005
Curtis is in Remission!!!
It's with great pleasure that we share some fantastic news. After eight months of highly aggressive treatments, Curtis has reached full remission! This is definitely the news we've been waiting so long to hear, and it's the best Christmas present we could have asked for! For the first time since diagnosis, the possibility of our family getting back to a normal life seems real. Leading up to this wonderful news was yet another grueling week of procedures and tests for Curtis but as always, he handled it like a champ.
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.
November 20, 2005
Radiation Update
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!
October 26, 2005
Arklan Elementary School
September 2005 is a time that we should be remembering as the start of kindergarten for our dear little Curtis. Instead, we will probably remember this as a busy time filled with tests and scans that preceded Curtis' grueling stem cell transplant. We will remember this not as a time of joy and new milestones, but rather as a time of fear and worry. Having said this, we would like to share a little about the school that Curtis would have started attending this year if his life had taken a different path - the school he will attend once he's off treatment. Just around the corner from us, there is a wonderful school by the name of Arklan Elementary. Arklan is filled with an amazing group of students and staff, who have been so kind to our family - most of all to Curtis. While many of these great people have never actually met Curtis, they treat him like he's a hero. As some of you may remember, our family was invited to participate in the Arklan School fundraiser for Terry Fox on September 16th. An afternoon assembly was held that day, and students each paid a twonie for a piece of duct tape, which they then used to tape a teacher to the wall. As the guest of honor, Curtis was asked to apply the first piece of duct tape, and was then presented with a school sweatshirt and hat. Before and after the assembly, students were waving and saying "hi", and eventually chanting Curtis' name. We were completely humbled and honored by this awesome display of affection of a boy they hardly knew. More recently, another kind and thoughtful gesture. Our neighbor Ashleigh, who is also a teacher at Arklan, delivered an envelope to us on behalf of some students who had taken the time to draw some really great pictures for Curtis. We love all the drawings and we love that they are always thinking of him - wishing him the best! We would like to say a big thank you to everyone at Arklan, for your continued support of Curtis and our family. We're so very proud that one day Curtis will have the privilege of attending your school!
We're Home
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"
October 16, 2005
Post Transplant Update
On a dreary Sunday morning three weeks ago today, it was time for us to pack up our things and head to Toronto, for what would prove to be the most difficult time in our journey. That Sunday afternoon after arriving in Toronto, we gladly honoured Curtis' two wishes of a visit to the CN Tower and a dinner at Applebee's, and on Monday it was time for our admission to Sick Kids. Since that day, we have been on an emotional roller coaster. Today, phenomenal news! This morning, only twelve days post transplant, it's a much brighter morning, at least as far as our emotions are concerned. Curtis was moved into a step down isolation room after his counts shot to the moon overnight.
WBC count today - 6.3; neutrapolys - 3.3! This by far exceeds our hopes of what his neutrapolys would do overnight, and I'm sure it goes without saying we're thrilled. Going forward now, we must work with Curtis to help him regain his appetite so we can return home. Who knows, if all goes well, maybe we'll be back by next weekend!
October 05, 2005
Update From Toronto
Four months ago, we travelled to Sick Kids Hospital in Toronto so that doctors could collect Curtis' stem cells. These stem cells were frozen and stored so that Curtis could be given a very high-dose cycle of chemotheraphy -- a dose that is so high it would hopefully eradicate his body of any remaining neuroblastoma cells but at the high cost of wiping out his vital bone marrow (where blood cells are made). Four days ago today, Curtis finished this mega-dose of chemo here in Toronto. Yesterday, Curtis received his stem cells back as part of a stem cell rescue procedure where his stem cells were unfrozen and transfused into his body through an IV into his central line. Over the coming weeks, these stem cells will make their way back into the bone marrow where they grow and develop into mature blood cells. Now we begin the intense isolation phase of Curtis' treatment where Curtis will remain in a special reverse isolation room for a number of weeks while his body recovers. We must follow very strict rules to ensure that Curtis remains infection free during this period. He has no immune system, and without his stem cells he would not recover. It's obviously going to be very difficult knowing how vulnerable he is right now, but we are going to ensure we do everything in our power to keep him safe from infection and keep him smiling as much as we can. We really miss everyone back home and look forward to bringing our special boy back home.
September 23, 2005
Leaving for Toronto
It is with great relief that we can tell you the good news that we will be leaving for Toronto on Sunday morning, and we will be admitted to Toronto Sick Kids Hospital on Monday at 1:00 pm. It is our understanding that Curtis' chemo is set to begin on Tuesday, his transplant the following Tuesday. Yesterday's MRI report showed that two of the lesions that they thought were new disease have actually gotten better, and while there was still one showing brighter, the radiologist feels that was due to a double injection of dye. Having said that, Curtis' bone marrow biopsy did come back posititve, but keep in mind it's not uncommon to still be showing signs of disease at this point. Dr. Johnston is referring to him as having "stable disease", and this IS good news!!
Thank you to everyone for keeping Curtis in your thoughts and prayers over the past week. We will keep everyone posted on Curtis' progress throughout the course of his treatment in Toronto, and we're hoping for a quick return!
September 19, 2005
Terry Fox Run
We attended the 25th annual Terry Fox run at Carleton University Sunday morning. It was an incredible event that saw over 6000 people turn out to run in honor of Terry Fox and support cancer research. Making the event even more special was having Curtis, along with Daniel Stanton and Dennis Gudbranson, open the run in a rickshaw operated by Cru Sears. Cru, who has operated a rickshaw for over 14 years in the Byward market, offered to pull his 200 pound rickshaw with the boys for the entire 10km run. Daniel and Dennis are two other very special boys who we have met along with their parents during our time at CHEO. Both Dennis and Daniel have recently returned from stints in Toronto undergoing bone marrow transplants as part of their leukemia treaments. Shortly, after getting underway, Cru offered to let me join the boys in the rickshaw for the rest of the run. He pretty much ran the entire 10km pulling over 500 pounds. This guy is obviously in amazing shape. Along the way, plenty of runners were clapping and cheering on the boys and Cru. It was a very memorial day for all of us and Curtis, who already knew exactly who Terry Fox was and why he's special, has even more admiration after taking part in the event.
September 16, 2005
Some New Hope
We have been given a small amount of hope, and we're holding onto it very tight. We just spoke with our oncologist, Dr. Johnston. She has spent most of her day on the phone with oncologists from around the world who specialize in neuroblastoma. While we realize there are no guarantees for us, she did tell us that she has found an oncologist who experienced a similar situation. In the case of this other patient, further testing showed that the new lesions were actually regenerating bone marrow, and not new disease. So what does this mean for us? Dr. Johnston wants to redo Curtis' MRI next Thursday and if the lesions appear to be getting better that would be very positive and would lean toward the "regenerating marrow" scenario. If this was the case, our stem cell transplant would be back on. Unfortunately there is always the possibility that the lesions would look the same or worse, in which case doctors would want to perform a biopsy to test for neuroblastoma. We hope to have the results of this new MRI by next Friday, at which time we will pass the news on to all of you.
We would also like to share the story of part of our afternoon. As a part of Terry Fox week at Arklan Public School, (where Curtis would have started school this year), there was a fundraiser today to raise money for cancer research. Our family was invited to join in the festivities, and part of the proceeds raised were donated to our family. For their fundraiser, they decided to duct tape one of their teachers to the wall in the auditorium. Leading up to this event, teachers had been telling their students about Curtis, so everyone knew he was when we got there. They even let him put on the first piece of duct tape and then presented him with an Arklan School sweatshirt and hat. He had a blast!! Let me say, Arklan is an amazing school, and the students and staff welcomed us with open arms. They treated Curtis as if he was already one of their own. At the end of the assembly, the were chanting his name, Curtis, Curtis, Curtis...What a great group of people! For anyone interested, CJOH was also at this event.
We hope you all continue to pray for Curtis this next week, as will we. Life is a roller coaster for us right now, but we've been given a smidgen of hope, so let's hold on to that!
Terrible News
It is with heavy hearts and much emotion that we must share some heartbreaking news we received yesterday. Despite our best efforts with high dose chemotherapy, Curtis' latest MRI is showing his disease has continued to progress and has spread further into his bones. As a result, we will no longer be travelling to Toronto for a stem cell transplant. Curtis' doctors feel that subjecting him to further high dose chemotherapy will not be beneficial, and could in fact be harmful. Our doctors, and all the people we love so dearly at CHEO, are refusing to give up hope, and will be spending this weekend exploring options for us going forward. At this point, it's felt our best hope will be a combination of radiation therapy and immune therapy.
As always,we appreciate your support. While we remain in shock from this news, we also remain hopeful that the wonderful doctors and nurses at CHEO will help us to beat this disease. Anna, our case manager at CHEO, said it best this afternoon - "Curtis will make history". We believe this from the bottom of our hearts. Curtis will make history and he will survive.
September 14, 2005
Recent Tests at CHEO
It has been a busy two week period with Curtis undergoing a whole set of tests at CHEO in preparation for Toronto. Curtis has been so incredibly brave through all of this. It's hard to imagine what his mind goes through at his age with all of the procedures. Even on the days he's not at CHEO and we're at home, we're constantly reminded of this battle we fight with his daily G-CSF shots. Our homecare nurse Jennifer is fantastic though and she's very good with Curtis. She's always cheerful and makes the dreadful daily needle a little easier to deal with. Curtis thinks a lot of her too.
One more test to do this week. Curtis goes in for a GFR which measures his kidney function. With only one kidney remaining, we will be anxiously awaiting the results of this last test hoping the chemotherapy has not caused any damage. Next Monday, prior to heading for Toronto, we will have one last visit at CHEO, this time simply to have a CBC, and his dressing and caps changed. This will also give us an opportunity to say goodbye to all of our friends at CHEO who constantly give us the support we need to make it through each and every day of this horrible disease.
This past weekend, we waited patiently for the results of last weeks tests, and last Monday, Dr. Johnston was able to give us preliminary results of a few of these tests. While we have yet to receive conclusive results of Curtis' MRI, we did find out that the both the bone scan and MIBG scans were clear of any disease. While it's difficult for us to get too excited, this IS positive news, and we are hoping for more of the same in the near future. Curtis' bone marrow aspiration also appeared to be clear of neuroblastoma cells, however we're still awaiting results of the bone biopsy. On a less positive note, Curtis appears to have suffered some minimal hearing loss at high frequencies, however this shouldn't affect his day to day conversations. We're hoping there is no further loss, but doctors will continue to keep an eye on this throughout his treatments.
Curtis will be admitted to Toronto Sick Kids on Wednesday, September 21st, and his chemotherapy will begin on Thursday, September 22nd. On Thursday, September 29th, Curtis will be moved to isolation, and will then receive the stem cell transplant. Thank you to everyone for their prayers and kind words as we head into the next phase of our treatment. Curtis continues to gain strength from you all, something we're certain is helping him to beat his cancer.
September 04, 2005
Chemo Cycle 6
We arrived home from CHEO last Friday following Curtio's sixth cycle of chemo. This was our final cycle of chemo prior to our big trip to Toronto Sick Kids Hospital. Curtis has been tolerating this cycle incredibly well. We had a very rough night the first night of this cycle with vomitting most of the night but Curtis has been doing much better ever since. He's already eating well again and playing actively since arriving home which is better than he has done is all previous cycles. We're really hoping we can buck the trend this time round and not end up back at CHEO with a neutropenic fever like every cycles 1, 2 and 4 when he has received these chemo drugs. Regardless, we're very proud of our little boy for doing so awesome yet again and keeping his chin up through the dreadful side effects of chemo. He rarely lets it bring him down and he continues to touch our hearts every day and keep us going. This visit at CHEO was probably the most challenging to this point with Mackenzie always on the move and we ended up on the smaller side of a room with another patient. We've been lucky in getting the window bed most of our visits which really helps with Mackenzie, but 4 North has been a full house the whole week long. Anyway, now we're thinking about the trip to Toronto and getting things in order around the house for our extended time away. Curtis also has a bunch of tests and scans coming up this week in preparation for the Toronto stay.
August 15, 2005
Curtis' Surgery a Success
We just spoke with Dr. Bass moments ago and he was pleased to report that he was able to fully resect Curtis' tumor. We are so relieved to get this news. Sadly, Dr. Bass also informed us that he had to remove one of Curtis' kidneys and the surrounding lymph nodes to ensure that no remaining tumor tissue remained. Losing a kidney was not unexpected. With Neuroblastoma it is very important to get all the tumor tissue and we were made aware that it might be necessary if it meant getting all of the tumor. We are now anxiously waiting to get the call that Curtis is awake in recovery so that we can be with him.
August 11, 2005
O'Connors Irish Pub Fundraiser Event
On Monday August 8th, Curtis' fundraiser took place at O'Connor's Irish Pub at the Kanata Centrum. The evening consisted of a buffet style dinner, live and silent auctions hosted by Mauler and Laura from The Morning Hot Tub on Hot 89.9 and live music from the Eric Eggleston Band and was a huge success, raising over $20,000 for Curtis! 290 people filled O'Connor's for the dinner and even more for the auction and there was standing room only. Julie and I are so grateful to everyone involved. A ton of hard work and planning went into this fundraiser. Our close friend Tammy Schofield who was the driving force behind the event deserves a lot of credit for making it a success as well as many, many other friends, family and volunteers who also devoted their time.
It was a very emotional night for Julie and I. There were many moments throughout the night that touched down to the core of our souls by the generosity shown. Kim and Paul Carswell, who's daughter Tori also battled neuroblastoma were there. Just seeing them brought me to be brink of tears because I know what they've been through. They donated two tickets to the upcoming Rolling Stones concert for the auction and then outbid everyone on the very tickets they donated to raise a lot of money for us. Another couple spontaneously donated their U2 tickets for the auction. These two incredible acts of kindness really highlighted the night. Of course seeing all of our friends, family, neighbors and many, many people who we do not even know present and rallying around us touched our hearts like never before.
We would also like to thank O'Connors for hosting the event, Brian Houle from Memories2dvd for putting together the amazing slideshow of Curtis that played on all the TVs that evening, the Eric Eggleston Band for providing the fantasic live music, the very funny Mauler and Laura from Hot 89.9 for running an entertaining live auction, CJOH and the A-Channel for their TV coverage of the event, the Ottawa Senators Foundation for presenting Curtis with the autographed jersey and making a generous donation, all the sponsors who donated items, and our very great friend James Skinner for capturing all the great photos of the evening below.
Gone Fishin'
Grampy and I spent the afternoon last Sunday with Curtis fishing at the Thistle Springs trout farm in Ashton just outside Carleton Place. It was a beautiful day for fishing and Curtis reeled in his very first fish. He caught three in total and was pretty excited. He also spent a lot of time looking at the fish in the bucket waving and saying "hi" to them.
Royal Bank BBQ
On Friday, August 5th, 2005, the Royal Bank in Carleton Place, organized an afternoon BBQ of hot dogs, hamburgers and refreshments. Proceeds of $816.00, were presented to our family on Monday night at the O'Connor's fundraiser. Thank you so much to the Royal Bank for hosting this charity BBQ, and thank you to all the businesses in Carleton Place who helped to sponsor this event. We're truly touched to see our community rally around our family.
August 01, 2005
Chemo Cycle Five
It's been a while since we've returned home from CHEO for chemo cycle 5 (we returned home on July 23rd). Curtis has tolerated this cycle quite well compared to cycle 3 when he had the same types of chemo drugs and had a difficult time with side effects. We're still home and thankfully no sign of neutrapenic fever. Curtis is eating well again and gaining back the weight he lost during the first few days following the chemo. He's been enjoying his time playing around the house and spending time with gran and grampy. This past weekend we also had a really nice visit with Uncle Gary and Aunt Sandy from Niagara-on-the-Lake.
July 25, 2005
CJOH Segment
CJOH, the local CTV channel, visited us at CHEO on July 19th, Curtis' birthday, to do a segment on Curtis. They called us in the morning and wanted to do an interview that afternoon to help us raise awareness for Curtis' upcoming fundraiser. After getting permission from the hospital, Joanne Schnurr and camera man Dan arrived at CHEO and took over an hour of video. The story ran on the CJOH local news show at 6pm and 11pm that night. Thanks to Joanne, Dan and the rest of the CJOH team for putting this together and for giving us a DVD of the segment. Curtis loves to watch himself on TV. Click on the links below to view the video.
|
|
 MPEG4/DivX
|
MPEG1
|
Curtis' 5th Birthday Party
On Saturday July 16th, we celebrated Curtis' 5th birthday at our house in Carleton Place. We wanted to make it an extra special day for Curtis especially since he would be spending his actual birthday, July 19th, at CHEO for his next cycle of chemotherapy. Plenty of friends and family joined us in making this a memorable birthday for Curtis. It worked out well too with the timing of his chemotherapy cycles that he was at his peak as far as his blood counts are concerned and feeling energetic. Thanks to everyone who helped make it a great day.
The day did get off to a rough start when I had to make the very difficult decision to have our cat Kirby put down due to a number of health concerns that arose recently. Without going into details, it was also complicated by the fact that Kirby's illness could potentially cause harm to Curtis while he's neutrapenic. Of all days for this to happen. Kirby was 10 years old and had been with Julie and I the whole time we've been together in Ottawa and California. We miss you Kirby.
July 10, 2005
Curtis in the local news
Curtis' story appeared in two weekly community newpapers recently - the Kanata Courier-Standard and the Mississippi Weekender. There's also a community listing for the upcoming fundraiser on Ottawa Start. Special thanks to our friends Tammy Schofield and Nicole Baker for helping to bring awareness to Curtis' story.
July 03, 2005
Clinic Visits
An important part of Curtis' treatment protocol, is bi-weekly visits to the Medical Day Unit at CHEO. Typically we arrive at the clinic around 9:00 a.m., and we're there for at least couple of hours. One of the nurses on the floor, generally Anna, will come and find us in the playroom shortly after our arrival. Curtis and I go with the nurse to a "special area" where he has his blood pressure and temperature taken, plus he is weighed and measured. Once all of his vitals have been taken, we're taken to another "special area" where Curtis' blood is drawn. The only exception to this is on Mondays, when Curtis needs to have his dressing and caps changed. On these days, blood would be taken from his broviac line instead of from his arm or finger. While we wait for the results of our blood work, we generally go back to the playroom and work on a craft or play some games. Occasionally, the Child Life Specialists and volunteers will be doing some "cooking" with the kids in the kitchen. Last week they made cupcakes baked in ice cream cones. (Very good stuff!!) Once our blood results come back, we would be free to go home unless Curtis' platelets or hemoglobin were low. In that case, we would stick around for a transfusion. When we're at clinic for a readmission visit for our next round of chemo, we would also have a visit with the oncologist. Although this all may sound very overwhelming, it actually isn't. All the nurses and Child Life Specialists work together to make things run as smoothly as possible and there are many volunteers more than willing to take Mac for a walk if things get crazy for a minute!
July 01, 2005
Chemo Cycle Four
Happy Canada Day! Today was Curtio's last day of chemo and so far he is tolerating round 4 quite well. With the exception of some mild nausea, he's been great. Usually by this point, Curtis would be experiencing some vomitting and general tiredness, but he was dancing in his room today and playing with baby Mac. He's also chatting it up with us tonight :)
Next week will be a busy one for us. Aside from our regular clinic visits, we also have some testing to be done. On Monday, Curtis is scheduled for a GFR (Glomerular Filtration Rate), a test which measures how well his kidneys are working. This test involves injecting a dye into his veins, and taking three blood samples to measure how well his kidneys’ drainage tubes are filtering out the dye. On Thursday, Curtis is scheduled for another audiogram to see whether the chemo drugs from round 3 are damaging his hearing.
June 22, 2005
Anna & Curtis
June 10, 2005
Back from Chemo Cycle Three
It's Friday evening, and we arrived home from CHEO a short while ago. Curtis was undergoing round three of his treatment protocol, which consisted of two different drugs than rounds one and two. This time he was receiving Etopicide for three days and Cisplatin for four. Both of these drugs require strict hydration following each dose, which is why we weren't released until today. The first two days of his treatment went extremely well - he was very energetic, no nausea. By the third day, it was becoming obvious that Curtis was starting to feel a bit nauseated, although he wasn't vomitting. Yesterday, his final day, he spent most of the day sleeping, although I'm not certain he was actually getting any rest. Today, he's been spending a lot of time "resting", as he's been feeling more nauseous, this time with some vomitting.
Monday will be his first clinic visit following this round of treatment, and we anticipate he'll be declared neutrapenic at that time. As is the case after each round, our ultimate goal is to keep Curtis healthy and home until his next round of treatment beginning Monday, June 27th. Having said that, as is always the case, we ask that only healthy visitors come by, and visitors will be asked to wear a mask. Unfortunately, daddy's already hibernating in the basement as he seems to have picked up a bug!!
June 06, 2005
Camping Trip
Curtis had a much deserved camping getaway this past weekend with Grandma Gwen, Grandpa Bruce and Alysha between his hospital stays at Toronto Sick Kids Hospital and CHEO.
June 02, 2005
Toronto Stem Cell Harvest
It's late Thursday evening, and we returned home just a little while ago from our stay at the Hospital for Sick Kids in downtown Toronto. Overall, everything went well with Curtis' stem cell collection. Monday, the femoral line was inserted in his right leg, and then Tuesday, Wednesday and today, stem cells were collected. While the line caused some minor discomfort for him, the apheresis procedure was painless. After Tuesday's harvest enough stem cells were collected to perform the transplant, however the doctors like to have enough cells for a back up transplant as well. Unfortunately, yesterday's harvest didn't result in enough stem cells, so we needed to stay the extra day. On Tuesday we also had a nice visit with Wendi and her boys Adam and Josh who drove 2 hours from London to visit Curtis. It certainly cheered Curtis up to see his cousins again.
Tomorrow, Curtis will be at clinic for his assessment and blood work before being readmitted on Sunday evening for hydration. Monday morning, round three of chemo will begin. This round, he will be given two different meds than rounds 1 & 2, and will be in for four days instead of three. We hope to be home by Thursday afternoon.
May 21, 2005
This was a very busy week for Curtis. Monday, we were at CHEO for an MRI and bone marrow aspirate, for which he was sedated. Curtis was feeling very under the weather Monday night, unable to even hold down a glass of water. Thankfully he was much improved by Tuesday morning, and again we were spending our day at CHEO for testing. This time we were scheduled for an ECHO and bone scan, both of which were painless procedures.
At our clinic visit on Thursday, we were given the results of his MRI. Although the radiologist saw no immediate change in the lesions on Curtis' spine and neck, he did note that the tumor itself appears to be shrinking. Once we receive the results from the other tests we will send another update.
Blood tests results from Thursday's visit were very good this time around. His hemoglobin was 104, platelettes 229, and his neutrapolys 0.46 (he is now netrapenic). Healthy visitors are more than welcome during the time he is neutrapenic, Trev and I only ask that it be a "touch free" visit as far as Curtis goes. We want to prevent the spread of germs as much as possible, so Curtis stays free of infection and out of the hospital!!
May 14, 2005
Round two of chemo is almost over, and Curtis seems to be tolerating it very well. He's had minimal nausea, very little vomiting, and his energy levels have been quite good throughout. For anyone thinking of visiting tomorrow (Sunday), please call first as we're expecting that Curtis will be discharged a little after lunch (fingers crossed!). We will be taking him in on Monday & Tuesday for outpatient testing, and Thursday will be a clinic visit day. Tests on Monday and Tuesday include an MRI, Bone Marrow Aspirate, Echo, and Bone Scan. All of these tests are repeat tests to monitor Curtis' progress, and the Echo is to ensure that no damage is being done to his heart.
We expect that Curtis will be neutrapenic (no immune system) by his clinic visit on Thursday, so during this time, we kindly ask that only healthy visitors drop by.
May 09, 2005
It's Monday evening, and Curtis has been doing fantastic since coming home last Tuesday :) He's been having a lot of fun playing at the park, doing bubbles, feeding the goose, not to mention playing with all his favorite toys at home. Helping to entertain Mac and giving us all "check ups", are some of the things he likes to do most.
Wednesday evening, it will be time to go back to the hospital for round 2 of chemo. We're planning on being there until at least Monday, perhaps even Tuesday. Please feel free to visit from Thursday on - I will email when we're bringing him home.
May 04, 2005
After three days in hospital, and no signs of any infection, Curtis was able to return home yesterday afternoon. He is no longer considered neutrapenic (which means his immune system is back up and running), so there should be no problem with him staying at home until next Wednesday evening when he will be readmitted for his second round of chemotherapy. As always, healthy visitors are welcome to drop by anytime (maybe just call to make sure we'll be here).
Our trip to Toronto, has also been scheduled. We will drive to Toronto on May 29. On May 30 we will check into the Sick Children's Hospital at which time a catheter will be inserted into Curtis in preparation for the stem cell harvest on the the 31st. Occasionally, two days of harvest are required, but we won't know this until the procedure is under way.
Thank you to everyone for their continued support! We love you all.
April 29, 2005
Trev and Curtis have just left for CHEO, as Curtis has a temp of 38.0, and is neutrapenic (he has no immune system). Trev will have to take him through emergency and he will be admitted for IV antibiotics for a period of time (possibly up to a week). Blood and urine cultures will be taken to see what's causing the infection. At this point I have no other information. Visitors will be allowed, but will probably be limited, and I imagine masks will be required.
April 28, 2005
Today was Curtis' first day in the outpatient clinic at CHEO. While in between chemo treatments, we have to be seen here twice a week - generally Monday's and Thursday's. Basically, doctors want to make sure things are going well for him at home, with respect to tolerating chemo, general nutrition (weight gain/loss), blood pressure & temparature, etc. His blood counts will also be checked, and if necessary a GCSF shot given (this helps to speed the recovery of white blood cells).
So today things went pretty good for Curtis. His blood counts were checked, and as expected he is neutrapenic (neutrapolys are 0.01). What this means is that he has no immune system right now, so it's imperative he not come in contact with any germs. Should he develop a fever while neutrapenic, it's back to the hospital. His other blood counts were good today - plateletes were 162 and hemoglobin 94. As well as having his blood counts checked, he also had to have the GCSF shot, and a bandage change on his broviac line. Nurses also removed the bandage from his neck. Curtis finds all of these procedures very difficult to deal with, but we're getting through it. On the brighter side of things, Curtis started making his bead necklace today, something all oncology patients get to do. There are different colored beads for different procedures, so you can imagine the necklace can get quite long. They also gave him a quilt, something part of a project called "project smile".
So, we're still lucky enough to be at home, and we're keeping our fingers crossed that Curtis stays healthy enough to be at home until our next round in two weeks.
April 20, 2005
Neuroblastoma
Earlier today, we received confirmation that Curtis has stage IV Neuroblastoma, which originated in his adrenal gland and has spread to the bones in his back and neck. His cancer is behaving very aggressively, so doctors want to treat it very aggressively. His first round of chemotherapy will begin tomorrow, and if all goes well, Curtis will be able to come home in about a week while he waits for his second round. Once his bone marrow has recovered from his second round of chemo, we will head to the Sick Children's Hospital in Toronto, for a procedure that will remove stem cells from his body - (these stem cells will be stored for a future procedure). Following this, we will come back to Ottawa for rounds three, four and five of chemo. After round five, the surgeons will reevaluate whether or not they can safely remove what's left of Curtis' tumor. If this is not possible, the surgeons will take as much as they can, and chemo and radiation will be required for any remaining pieces. Round six of chemo is a high dose, that will essentially kill off all of his marrow. After this round, we will head back to Toronto, where doctors will transplant the stem cells taken following round two back into his body. At this point this is all the information that we have on Curtis' treatment, but should we find out anything else we will keep you updated.
We want you all to know how much your support and kind words mean to us right now. Without all of you in our lives, I'm not sure how we would get through this. Please continue to visit, and if we are lucky enough to come home in between treatments, we welcome visitors at home too. It really helps Curtis to keep his spirits up:) Thank you for your love and prayers.
April 12, 2005
Just a quick update tonight...Curtis will be home until Wednesday morning, and then we are back to CHEO for awhile. Wednesday, Curtis will be having an echo cardiogram, and Thursday, doctors will perform a biopsy and bone marrow aspirate. Results of the biopsy should take about week and then we will have a definitive answer on what type of tumor it is. Results from a 24 hour urine collection should be in tomorrow, and that will also help to answer some questions. While results have not been confirmed as of yet by the bone scan today, the oncologist does feel that this has spread into his bones, and is probably stage 4 cancer.
W would like to thank everyone for their continued support and love. It means so much to us to know how much you all love Curtis. As always, we will keep everyone updated as we receive more information. Bye for now.
April 11, 2005
It's Monday morning and I wish that we had more information to give out, but doctors still need to do further testing. There is some debate on where Curtis' tumor may be growing from, so radiologists, doctors, and surgeons are all meeting together this morning to go over the pictures from his CT and MRI scans on the weekend. Once they've reached a consensus, that will help to decide the course for further testing and treatment. There is some concern that this may have spread into his bones, so one other possible test would be a bone scan or possibly a bone marrow aspirate.
We don't have anymore information at this time, but we will update you again soon.