Our beloved Kyle passed away peacefully just before 1:00 this morning at Mount Sinai Hospital. He was admitted on Sunday evening with symptoms of dehydration, shortness of breath and increased pain.
Our hearts are filled with such sadness and our world feels empty without him. There isn't anyone who could have fought harder or longer with such determination. We miss him so much already. Our only peace is in knowing that his suffering is over and his pain has been washed away.
Your support gave so much comfort to Kyle and our families, and lifted him up on his worst of days during his 20-month long battle with sarcoma.
Funeral and visitation details will be posted once the arrangements have been finalized.
Vanessa and Families
Over the last couple of weeks, Kyle had three treatments of his new chemo regiment through IPT in the Bahamas. After having a bit of a reaction and scare from the first treatment (he had a high fever and shortness of breath in the evening of March 18th), we were hit with a wakeup call and decided we should starting making plans to head home to Toronto. Since his first reaction, he has been able to tolerate the drugs without any problems, however for a number of reasons we were starting to feel like the Bahamas wasn't the best place for Kyle at this time. We may consider returning to Freeport at some point in the future, but for now our plan is to get Kyle home to Toronto where he'll resume the same chemo treatment at a private clinic in the city with Dr. Gagovski. Dr. G has been treating patients with IPT chemo through his clinic for almost 20 years and has a lot of experience with treating stage IV cancer patients.
Over the last 48 hours Kyle's pain has increased considerably; now it's all along his left side from his neck down to his hip. Our original plan was to leave on Friday of this week to start our journey by ferry/car back to Canada, but very suddenly on Monday evening we decided it was time to pack up our things and get off the island. After four long months in Freeport, it was difficult for us to say goodbye and close the doors on the little slice of heaven we've called home...but we both had a strong feeling that it was time to move on and there was no sense in delaying our departure any longer.
We took the ferry boat across from Freeport to Ft. Lauderdale late last night. We're in Fort Myers now where our car has been living since we left for Freeport in December. We plan to start the drive back to Toronto from Florida either tomorrow or Friday morning, depending on how Kyle is feeling. We are so lucky to have our good friend Kyla with us now who flew down to Freeport from Toronto last Friday...she's here with us in Ft. Myers and will be my co-pilot for the drive home, while Kyle sleeps with Connor in the backseat!
We don't consider this move as taking a step backward, but that Kyle will be able to take leaps forward since he'll not only be surrounded by the support of friends and family, but also we'll have the comfort in knowing that there's backup emergency medical support available to him, if ever necessary (though we don't anticipate he'll need it!).
We're hoping the increase in pain and onset of new symptoms is just a bad case of island fever and that we'll both regain some strength over the next few days, so that he's able to resume his chemo treatments in Toronto next week.
Today went very smoothly. It was a long day and very different than a regular chemo day at Mt. Sinai in Toronto, but all in all, Kyle is doing well aside from his usual pain and discomfort. Depending on how he does over the next day or so and most importantly depending on his blood counts, Dr Bethel said he may want to do another treatment this week...probably on Friday.
It's safe for Kyle to receive chemo once or twice per week through the IPT method, because as I mentioned the other day, he was only given one tenth the regular dose of his chemo drugs. His treatments are 'potentiated' by the nutritional cocktail and particularly by the insulin that he was given before his chemo started today. The insulin dropped Kyle's blood sugar dramatically (from about 120 to 50 mg/dl), which didn't make him feel too great...he felt woozy for a few minutes and a bit light headed...but that was the goal. The idea behind this method of treatment is that cancer cells feed off of sugar. Therefore when the blood sugar in the body drops, healthy cells begin to metabolize fat but cancer cells immediately go into 'emergency mode.' During this time the cells become vulnerable since they open their membranes to soak up any sugar they can from the body. Once the chemotherapy is transmitted, they gave Kyle a small dose of dextrose (sugar), which the vulnerable cancer cells instantly try to gobble up, but along with the sugar, they also take in the sweet taste of chemo!
Anyway, along with benefits of IPT, it's expected that Kyle won't experience the regular side effects of full dose chemo such as nausea, vomiting, hair loss, low blood counts and liver damage. We're glad to be trying out a less invasive treatment approach and it all sounds fine and dandy in theory...now we just need it to work and make Kyle better!
We'll keep the updates coming and let you know how things go over the next few days.
The last several weeks have been some of the toughest times we've had to endure throughout this journey with cancer so far. Kyle has been declining; his pain has increased (which we didn't think was even possible), he's lost weight, and has less and less energy, which makes it difficult to even get out of bed some days...I can, however always seem to lure him out of bed when a wings or leafs game is on!
We know that Kyle's situation is not good and he needs help right away. We are grateful that Kevin, Kyle's dad is here with us right now and has extended his trip to stay another two weeks while we get Kyle started on his new treatment plan. Some more family will join us next week, which I think will give Kyle a huge boost!
On the flip side, we received some good news earlier in the week. We finally got the results from the chemo sensitivity testing we had done over four weeks ago using the tissue removed from the biopsy of his tumour. The results revealed that Kyle's tumours are 'sensitive' to a few different combinations of chemotherapy drugs. The most sensitive being a combination of gemcitabine + cisplatin...both drugs he has received in the past, but never in combination (he received gemcitabine last year as a single agent and cisplatin when he went through chemo in 2003, but it was given in combination with four other drugs). Apparently the synergy between gem and cisplatin is key, so it is definitely worth a shot!
After consulting with doctors across the globe, including Dr. Bethel (Bahamas) doctors in Toronto, Dr. Rosenberg (Florida) and an oncologist in California, we have decided that the best option for Kyle right now is to start on low dose chemotherapy using these two drugs. We were a bit uneasy about starting treatment here with Dr Bethel, but after much discussion and consideration we all agree that Kyle's in great hands and its safest for him to stay here in the Bahamas right now. He will begin insulin potentiated chemotherapy treatment (IPT) here on Monday.
The reason we have decided to do IPT vs. regular full dose chemotherapy, like he's had in the past, is because Kyle is too weak and 'fragile' as he says to take on full dose chemotherapy right now, considering all of the side effects that come along with this treatment. The benefit of having chemo through IPT is that he has the potential to receive the same benefit from the drugs as full dose chemotherapy, but since he will only be given approx. 10% the usual dose of the drugs, he won't experience the same damaging side effects as he would with full dose. The drugs have the effect of full dose chemotherapy because they are potentiated by a combination of insulin, glucose and other nutritional agents, which target the tumour cells and have no damaging side effects. This is not a new or experimental treatment, in fact it is now being done by more than 600 oncologists in the US today and much more around the world. Another benefit of IPT is that the treatment can be given much more frequently than in regualr chemo doses, because the drugs aren't expected to have much of an impact on Kyle's blood counts. For now, the plan is for him to have one chemo treatment per week and that may increase to two treatments per week, depending on his response and reaction.
I should also mention that interestingly, the chemo sensitivity test results also indicated that Ky is resistant to Votrient, the targeted medication Dr Blackstein prescribed and he's been taking since September. He's now happily discontinued use with Votrient, for good (he hated taking that stuff!). We were pretty sure Votrient wasn't working, but we wanted the confirmation before giving up on it.
So that's pretty much the full update for now. I wish I had better news to pass on, but what I can say forsure is that there is a lot of promise in the path ahead! All of Kyle's doctors agree this is a great and exciting next step for Kyle to take and we're hopeful about the outcome. We are constantly doing the best we can to get Kyle the best treatment and care possible, although at the same time we have to be realistic and consider his energy level and limitations at this time. There is a lot of information coming to us about treatments and doctors far and wide, but especially with Kyle's travel restrictions we have to make good decisions that will conserve his energy so he can stay strong and beat it!!
As Brodie mentioned the other day, we don't believe Kyle's cure will be in one treatment alone, so we will continue to try and hit this thing from as many angles as possible. He will continue with some of the other treatments, which doctors think Kyle is benefiting from such as the vitamin IV infusions and Coley's treatments (when he's feeling strong and brave enough take that beast on!)
We thank you all for your continued love, prayers and support.
Lots of love,