Brodie's take on our Journey in The Bahamasby Kyle & Vanessa on 03/14/13
Vanessa asked me to write a blog post to update you all on Kyle. We know there are a lot of people that are thinking about him and anxiously awaiting any news. The flip side is, this has been a long and emotional journey for Kyle and Vanessa with ebbs and flows--and perhaps a little tough for them to convey what is going on, on a regular basis -- one thing is for sure, they are very thankful for all the tremendous support they are receiving from everyone at home.
My wife Alex, our 6 month old daughter and I were able to break away and head down to Freeport, Bahamas, where Kyle has been receiving his treatments since December. Vanessa asked Alex to come a few days prior to our original scheduled departure to transport some medication for Kyle that could not be mailed. Alex (and Sawyer) were happy to get down to beautiful Bahamas a few days earlier. Brandon, Kyle's older brother, also decided to visit a little earlier than planned, so we jumped on a flight together. Kyle knew that I would be coming, but we kept Brandon's early departure a secret.
When we arrived in Freeport, Vanessa and my two girls picked Brandon and I up from the airport. The weather was a welcome change from snowy Toronto. Driving through Freeport, I couldn't help but think about Kyle and Vanessa's journey to get here. Freeport is a nice place, but it definitely had to be intimidating to come down to an unfamiliar place to receive this alternative treatment. It has always amazed me to see Kyle and Vanessa navigate through this challenging path to find a treatment that works for Kyle. It takes a lot of persistence and will.
We arrived at the house where Kyle and Vanessa have settled since being in Freeport. I'm relieved to see (for Kyle and Vanessa) that the place is very nice and comfortable. When they first arrived in Freeport they stayed at a hotel, which you can imagine would be challenging on many levels. especially since kyle isn't really able to get out much these days, even to a restaurant for dinner can be a struggle for him. It has become much easier for Kyle and Vanessa to get acclimated and into a routine, being in their own place, with their own kitchen and all the necessities. A slow pace and a good place for Kyle to focus on his recovery.
It had been a couple months since I had last seen Kyle and I wasn't sure what to expect. He had written my an email prior to my trip explaining that he wasn't feeling well, the pain was intense, and it was scary for him to now be able to see and feel his tumours. With the exception of some discolouration in Kyle's hair, he looked like the same old Kyle. Tanned and thin...close to passing for a local Bahamian.
Brandon decided to wait behind outside to set up the surprise. We pretended that Connor (their dog) had gotten outside and was lost. Kyle went outside to try and find Connor. From inside I could hear Brandon in a fake voice say "is anyone looking for a dog?" It took a second for it to register, but once Kyle realized who it was, it was a really cool moment. Brandon and Kyle are extremely close and I think it was a real boost for Kyle to see his older brother.
We settled in and had a great meal together while watching the hockey game, which ky really enjoys since it provides some resemblance of normalcy. It was fun sitting back and watching Brandon and Kyle watch their Leafs together (albeit with blind optimism, go Habs go).
Staying with Kyle and Vanessa really gave us a sense of how they are managing day to day (which I know a lot of family and friends are curious about). It is tough to understand the depths of Kyle's pain, because he does a good job concealing it. Toughness comes in a lot of different forms, and Kyle has always had a quiet toughness about him. I remember playing JR lacrosse with Kyle and getting shoved into the back of Kyle's leg. I heard a pop. I thought that I had broke his ankle, but Kyle didn't react, not a peep. He quietly hobbled off to the bench to receive attention from the trainer. It ended up being a major ankle injury. Most people would be screaming or flailing around. Seeing Kyle go through this fight, reminds me of that time. He takes the pain quietly, not looking for attention or sympathy. While at the house, when Kyle was experiencing pain, he would discreetly duck away to his room.
Kyle has been doing a lot of meditation and relaxation exercises to help manage with his pain when the pain medication isn't working. The meditation seems to really help - It allows him to take his mind to another place, away from the pain.
Brandon and I tagged along to the clinic for one of Kyle's treatments. It was good to sit in and listen to Kyle's doctor, Dr. Bethal explain how Kyle is responding to the treatment and understand what his treatment plan would be moving forward. The treatment he is on - Coley's toxins is used to trigger a high fever which ignites the immune system and forces an attack on the tumours. this treatment has proven its success for other sarcoma patients, and it appears it may be helping Kyle. Dr. Bethel, quiet and understated, seems like someone Kyle and Vanessa can trust, which is a huge factor.
The fevers are intense. It has to be tough for Kyle to receive the treatments knowing what the reaction will bring. As Brandon put it, it is basically like asking someone to give you a swift kick in the junk in the hopes that it will make you feel better. We weren't even home 10 minutes before the fever had started. Deep, heavy shivers---not easy for us to see Kyle in that state.
Despite the intensity of Kyle's treatment that day, he still managed to keep us laughing. Earlier in the day when I was introduced to Dr. Bethel, he assumed that I was Kyle's brother and thought we looked alike. When we got home and while kyle was in the midst of the intense treatment Kyle looked visibly upset. Vanessa asked if everything was ok and Kyle replied that he was feeling fine, but upset that the doctor thought that he looked like me!! I was happy to see that Kyle hasn't lost his sarcastic humour!
It was encouraging to see Kyle later that night after the fever had calmed down. It seemed like he was able to manage the treatment better than his first few treatments that left him bedridden for a couple days.
Although Dr Bethel seems to think the Coley's treatment is benefiting Kyle, we all thought it was a good idea to start forming a backup plan in the event Kyle needed to start on something new. Kyle and Vanessa decided to have a phone consultation with Dr. Rosenberg in Florida, who is the director of the Integrative Cancer Association and has a lot of experience in treating patients with Coley's and other alternative treatments Kyle is considering. As we've heard before, Dr Rosenberg explained that it will not be one or two treatments alone that will cure Kyle, especially because his disease is so aggressive we need to come up with a plan that targets the cancer from many angles. Coley's may be one of them, but in his opinion it isn't going to be enough. Everyone is different and responds to cancer treatment differently, but generally with stage IV cancers, an aggressive approach is necessary. Dr Rosenberg's first recommendation was that Kyle should go back on some sort of chemotherapy - low dose (otherwise known as insulin potentiation therapy IPT) he said would probably be the safest approach for Kyle at this point, considering his current state. Low dose chemo gives the effect of full dose chemo but only uses 10-15% the regular dose in combination with insulin, glucose and other nutritional agents, which potentiate the chemotherapy's effect and make it as effective or even more effective than the traditional approach.
Before starting chemo, as other doctors have recommended in the past, Dr. Rosenberg suggested Kyle have chemo sensitivity testing done using a sample of tissue from one of the tumours in his chest (the testing can be done from a blood test using the circulating tumour cells in the blood, however it's much more accurate to do the test using live tissue). As you know, a few weeks ago Kyle had a biopsy done at the Freeport Hospital and the wheels are in motion for Kyle to start on new treatment ASAP.
I know Kyle and Vanessa love hearing from people back home. Words of encouragement and support go a long way, especially going through this so far from home, which I'm sure can get a little lonely and isolating. Being around Kyle and Vanessa was inspiring and reinforces a belief that there is light at the end of the tunnel and Kyle will Beat this again!
Visit www.kylemiller35.com to find ways to support Kyle. Good time to pick up a new winter toque!