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!
We arrived home from the hospital at around 5pm this evening. Kyle was exhausted, as was I, so we took a well deserved nap. He got up at about 9:30 and is moving around much better than when he left the recovery room this afternoon. He has a lot of pain in his upper chest where the tumour was removed, so hoping things will start healing quickly and he starts to get some relief from the pain. He'll have the day off from treatment tomorrow so he can get lots of rest and work on getting his energy back up. As I mentioned earlier, I only spoke with the surgeon briefly after the surgery, but he said he was quite surprised about the depth and size of the tumour; they anticipated it would have been much closer to the skin and a bit larger. He said everything went as planned and he was able to get more than the required amount of tissue to send off to the lab for testing , which is great news since the number of chemo drugs they will be able to test against Kyle's tumour, depends upon the number of cancer cells in the tissue sample. However, just because they were able to remove lots of tissue, doesn't necessarily mean there will be tonnes of cells in it...there could be 1 or 2 or could be 30...we'll know more once the tissue arrives at the lab in California tomorrow. That's all for now...we'll try to keep the mini-updates coming on a more regular basis. Thank you for all of your support! Love,
We arrived home from the hospital at around 5pm this evening. Kyle was exhausted, as was I, so we took a well deserved nap. He got up at about 9:30 and is moving around much better than when he left the recovery room this afternoon. He has a lot of pain in his upper chest where the tumour was removed, so hoping things will start healing quickly and he starts to get some relief from the pain. He'll have the day off from treatment tomorrow so he can get lots of rest and work on getting his energy back up.
As I mentioned earlier, I only spoke with the surgeon briefly after the surgery, but he said he was quite surprised about the depth and size of the tumour; they anticipated it would have been much closer to the skin and a bit larger. He said everything went as planned and he was able to get more than the required amount of tissue to send off to the lab for testing , which is great news since the number of chemo drugs they will be able to test against Kyle's tumour, depends upon the number of cancer cells in the tissue sample. However, just because they were able to remove lots of tissue, doesn't necessarily mean there will be tonnes of cells in it...there could be 1 or 2 or could be 30...we'll know more once the tissue arrives at the lab in California tomorrow.
That's all for now...we'll try to keep the mini-updates coming on a more regular basis. Thank you for all of your support!
Love,K & V
I apologize that yet again an update is long overdue. I wanted to give you a quick update to let you know that Kyle has gone into surgery this morning.
we believe Kyle has started to respond to his treatment here in The Bahamas with Coley's toxins vaccine. it appears as though the tumours in kyle's chest, lower left rib and back lower rib, which had recently grown and become visible through his skin, have decreased in size considerably over the last two weeks. We're really excited about the results so far and Kyle will continue with these treatments for now. however, Kyle decided a couple of weeks ago that he wanted to start devising a back up plan, in the event that new treatment is required...the plan we've come up with can sit in our back pocket for now, or forever if Coley's continues to work.
After the recommendation of kyle's doctor, and Dr. Rosenberg (an american doctor in florida we consulted with who has a lot of experience in treating patients with many alternative cancer treatments including Coley's vaccine, low dose chemotherapy (insulin potentiation) hyperthermia and many more we've looked at and considered for kyle over the last year.) After consulting with both doctors, Kyle agreed to undergo surgery to remove a piece of live tissue from one of the tumours on his chest wall so that we could have it sent off to Wiesenthal lab in California for chemo sensitivity testing. There are other chemo sensitivity testing assays that only require a few vials of blood for testing, which would have a lot less invasive, much easier to arrange and less expensive to have done, however both doctors agree that the Wiesenthal testing with live tissue is much more accurate than he other methods.
We met with a thoracic surgeon here in Freeport earlier in the week who will be performing the procedure this morning. He will remove approximately 5 grams of tissue from kyle's tumour. Dr. Ferguson is very friendly and clearly over qualified to perform this biopsy procedure on Kyle - we could have had just a general surgeon do the surgery but Kyle felt more comfortable having a lung specialist work on him, even though the surgery is being done on the chest wall, not from within the lung - surgery within the lung would have been much much more invasive and one the surgeon said would not be 'ethically sound' considering Kyle's overall clinical picture i.e. because he has tumours that have spread to his arteries and to his right lung they are aren't able to remove all of the cancer so it's unethical since it would be major surgery and recovery time...if cells are left behind spread would likely continue and could defeat the purpose of the surgery all together.
So that being said, that is why it's so important for Kyle to find treatment (whether it be chemo or Coley's or another immunotherapy) that will continue to shrink his tumours and allow us to gain control of his disease.
We arrived at the Rand Memorial hospital in Freeport this morning at 7am. The hospital is small but very clean. Once we checked in with the surgical desk we parred ways as they took Kyle directly to the pre-op room which is a restricted area. Just as I'm writing this the surgeon and anesthesiologist arrived, we said hello and they went back to prepare for the surgery. The surgery was scheduled to start at 9am but it seems like they're running on Bahamian time this morning. The surgeon and anesthesiologist said they expect the surgery will be about one hour and then he'll remain in the restricted area for 2-3 hours for recovery. The surgeon or his nurse said they will update me as soon as the surgery is finished, so I will try to update you again sometime this afternoon.
Although we expect this tiny procedure will go off without a hitch, your prayers and support and well wishes are all helping Kyle this morning. Although he has been a bit nervous over the last couple days about having this procedure done, he was feeling very strong and confident this morning.
Lots of love and talk soon,
Happy New Year everyone! We are certainly looking forward to 2013 as a year of improved health and healing for Kyle.
There have been a lot of changes to Kyle's treatment plan since my last post. As you may know, after much consideration of the challenges associated with travelling to Germany, Kyle decided to seek treatment in Freeport, Bahamas. He is being treated at the IAT clinic in Freeport; a clinic referred to him by a family friend, who was treated at the clinic and has had great results in fighting his cancer.
Kyle and Vanessa arrived in Freeport in early December, and Kyle has undergone several different types of treatments concurrently, which he will continue with for the next couple of months. It's too early to tell whether the treatments are working at this point, but the doctors have seen promising clinical response that leads them to believe he is benefiting.
On behalf of Kyle and Vanessa and our families, we want to thank you all for your donations and support through the Beat It draw. Your help has ultimately made this next phase of treatment possible.
Also, I want to remind you that the Beat it Draw will take place on Friday, January 18th at 9:00pm at Fionn MacCool's Restaurant - 75 Fourth Avenue, Orangeville (for details on the event click here). Everyone is welcome to attend, but it's not required. All winners will be notified by email or phone and posted on the website following the draw.
Tickets for the draw are still available online and the site will remain open until 6:00 pm on January 18th (click here to buy tickets or go to: www.kylemiller35.com/beatitdraw.html). Tickets will also be available for purchase at Fionn MacCool's, the day of the draw.
Please feel free to forward this message to anyone who may be interested in attending or buying tickets for the Beat It Draw. Again, our thanks for all your generous support. We couldn't do this without you!
Wishing you all the best,
We arrived in Freeport from Ft. Lauderdale almost two weeks ago. An update is long overdue...it seems we acclimatized to the Bahamian pace pretty quickly. Life is quite different here...no one seems to be in much of a rush to do anything or go anywhere. The first few days were an adjustment, to say the least...but now that we've relaxed a little, we're really enjoying our time here.
Our ferry ride from Ft. Lauderdale went pretty smoothly except of course for the boat ride itself, which was ANYTHING but smooth. Kyle and Kevin didn't seem effected by it, but I'd have to say it probably rates on my top ten list for one of the most terrifying and nauseating experiences of my life! I may never leave this island!
As I said, the first few days were a major adjustment for Kyle and I. When we arrived on Tuesday Dec 4th, we went to the clinic as planned to have Kyle's blood drawn for testing. We expected to see Dr. Bethel on Wednesday morning, but for whatever reason we didn't get in to see him until Thursday. When we finally met with the doctor, we discussed various immune based treatments that he thought we should consider for Kyle, in addition to the Coley's vaccine, which Ky had pretty much already decided he would start on immediately. Dr. Bethel gave Kyle his first dose of Coley's that afternoon.
We came up with a pretty good plan for Kyle to start out on, which consists of three different vaccines; Coley's, Heat Shock Protein (HSP) vaccine and the pneumococcal vaccine. I'll do my best to briefly explain how each treatment works...
Because of the way that the Coley's and pneumococcal vaccine's are being injected here (sub dermal - under the skin) they work with the dendritic cells within the body that lay directly under the skin which are typically unprogrammed for use until they're called into action (it's usually because of a small cut or bruise that activates these cells to heal a wound). The pneumococcal vaccine was designed for its use to prevent influenza and pneumonia. Because of this, when injected through the sub-dermal method the vaccine programs the dendritic cells to travel to the lungs (where pneumonia's are found) to clear up infection. Even though there is no pneumonia in Kyle's lungs, the cells are programmed to seek and destroy infection in the lung...the theory is that when it arrives in the lungs and finds tumour cells, it will destroy this 'infection'. Similarly, the Coley's vaccine, when injected by the sub-dermal method, programs the dendritic cells to work to destroy infection within the connective tissue of the body (since sarcoma cells are generally comprised of connective tissue, Coley's is thought to be most effective on these types of tumours).
The Heat Shock Protiens (HSP) vaccine is a customized treatment that was actually developed specifically for Kyle using samples of his urine. The idea behind the treatment is that HSP's are proteins produced within the body when cancer cells are stressed or dying. The theory is that if these proteins, which are excreted in the urine, are collected and made into a vaccine, they will stimulate the immune system to target and kill the cancer cells.
So as you can probably imagine, the treatment schedule has been and will be pretty intensive...each treatment will be given twice per week on altering days...which means he'll have one injection per day, six days per week (Mon-Sat). Additionally, Dr. Bethel started Kyle on a pretty hefty vitamin protocol, that includes two days per week of vitamin IV cocktails...this will help strengthen his immune system to help his body fight and destroy tumour cells as well as breakdown the tumours to make them more vulnerable to the other treatments.
For now, Dr. Bethel recommended Kyle continue on his medication, Votrient, since he doesn't feel there will be any contraindications with the treatments he's offering and this drug. The doctor isn't convinced Votrient is really providing any benefit to Kyle, but it's likely not causing any harm either...i.e. to his immune system, so he'd rather not rock the boat, and advised Kyle to continue taking it for now, even though Kyle really wanted to stop using it.
So far, Kyle's tolerated all of the treatments pretty well. He hasn't experienced any severe reactions to any of the vaccines, although after the second injection of Coley's he started to feel some pretty intense pain, about 4 hours after injection. At first we were pretty concerned...we spoke to the doctor that evening and he told us that many of his other patients have reported similar reactions. Although he sympathized with how Kyle felt, he explained that the reaction was actually a pretty good sign. He told us that even after only two treatments the Coley's has the potential to start killing tumour cells, which can cause inflammation...since Kyle's tumours are close to the nerves (particularly the one around his arteries in his neck), they are highly sensitive and even a slight increase of inflammation in that area would cause a significant increase in pain.
So, all in all, Kyle's pain hasn't been great as a direct result of treatment (he's been better in the morning, but in the evenings after treatment he's typically in a lot of pain), though it gives us hope and him the ammunition to bear the pain and continue on with the injections. In fact, we have already received a bit of positive news... nothing quantifiable at this point, but definitely encouraging! Before Kyle started treatment, Dr. Bethel performed a routine physical exam and used a stethoscope to listen to Kyle's breathing, heartbeat, pulse, etc. During the exam, he was pretty concerned about the lack of blood flow around the corroded artery (where Kyle has the tumour in his neck). He let me listen to the difference in sound from the left to right and even I could hear a remarkable difference...we could hardly hear any blood flow on the left side. This past Friday, about one week later, Dr. Bethel did another exam and listened to the same areas on Kyle's neck...he was stunned! And after listening for myself, so was I!! There is a distinct improvement in the amount of blood flow...the sound is still much weaker than the right side of his neck, but the marked improvement is likely an indication that the tumour in that area has decreased in size and is allowing more blood to flow through that artery, hence the louder sound.
They say, 'It's Better in The Bahamas' ... and so far, its proving to be! We're pretty excited about the direction and track we're headed in. We're still unsure of how long we'll have to stay down here, but it will likely be another couple of months so that Dr. Bethel is able to closely monitor Kyle and make changes to the treatment plan and dosage, as needed. We're planning to go back to Florida by ferry this coming Friday, the 21st, where we'll meet some family, including Connor to celebrate Christmas. We'll head back to Freeport on Dec. 27th to resume treatment. We're disappointed that we won't be back in Toronto to see all of our friends and family over the holidays, but we'll be thinking of you all and hope everyone has a very safe and Merry Christmas!
Love from The Bahamas,
Kyle and Vanessa xo