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
The past week was a much better week for Kyle. As I mentioned in my last post, his pain has been exceedingly worse over the last several weeks, however it seems like his new pain medication is starting to work and he's had some major relief over the last few days.
We finalized our plans with the IAT clinic in the Bahamas last week and so we started our trip down to Florida yesterday afternoon. We stayed overnight in Niagara Falls where Kyle's dad Kevin lives, since we hit a snowstorm on our way to get him from Toronto yesterday, which made our trip an enjoyable 5 hour journey...a drive that usually only takes an hour and a half.
Anyway, we made great time today and Kyle was well enough to sleep in the back-seat all day so we drove a total of 16 hours and arrived in South Carolina this evening (we even almost ran out of gas at about 6am this morning in the middle of NOWHERE..we waited around to help the Shell clerk open up shop at 6:30 and got a fill up (thanks again for that Kevin). As he says, its all part of the adventure! We plan to get up early again tomorrow and drive about 9 hours to Ft. Myers, Florida where we'll stay until we take the ferry over to Freeport from Ft. Lauderdale on Tuesday morning.
So here we are in South Carolina, only 8 months from our last trip down south...which seems like more than a century ago. Again, we're adopting the SC state motto ...while I breathe, I hope...take two! Tonight Kyle feels well, so we're going out to celebrate Kevin's birthday with him.
We have a great feeling about the days and weeks to come and we'll be sure to update you all as soon as we're settled in Freeport on Tuesday. Thank you all for supporting Kyle in his decisions and the path he's chosen...he feels an unbelievable amount of support and love around him right now...such an important part of the healing process!
Hugs & Kisses,
Kyle, Vanessa & Kevin
It's been a long time since we have had the energy or the presence of mind to bring you up to date with our news. But first, we want to thank each and every one of you who have supported us over the last while... your donations and contributions to the beat it draw have made it possible for the next leg of our journey to be an imminent reality, and from the bottom of our hearts, we thank you very, very much.
As before, we are continuing to research and make contact with medical facilities within and outside North America to indentify treatments that may be successful in reducing Kyle's tumours and allowing us to gain control of his disease. During this time, Kyle has also continued visits to his doctors and other health practitioners here in Toronto almost daily for whatever medical treatment has been available to him, and for help to manage his pain, which has been steadily increasing and becoming unbearable. He has continued use with Votrient, the targeted therapy he began using nearly two months ago, however we received some news last week that slight tumour growth was present on a recent CT scan. Further tests were done last week and we will know more once we see Dr. Blackstein on Tuesday for a follow up and review of the scans.
For a number of reasons, we have determined that travelling to Germany to seek treatment with Dr. Lentz is not possible at this time, although we are still considering it for the longer term. As I mentioned before, the tumours in Kyle's lungs make air travel impossible (all of the oncologists and surgeons we have spoken with agree it would not be safe for Kyle), and a 10-day voyage by sea and rail would just be too difficult and taxing when his immune system is not strong at this time. Also, we discovered the ship schedules to Europe are very limited during the winter months, so this trip would be far more feasible to be made in the spring.
We recently became aware of the Immune Augmentation Therapy (IAT) Clinic in Freeport, Bahamas, through a friend of a family member, who just recently underwent his own battle with cancer. Though he has a different type of cancer than Kyle, his disease was quite aggressive. He spoke about the doctors and the IAT facility with a very high regard and particularly recommended his doctor, Dr. Kevin Bethel, a Canadian-trained medical doctor who has been practicing in the Bahamas and doing research specifically in treating cancer through immunology.
After reviewing Kyle's history and records, Dr. Bethel has recommended that Kyle start a protocol with him immediately, which will include Coley's Toxins as well as a number of other treatments that will focus on building Kyle's immune system so that his body can play an active role in fighting his disease. There are minimal side effects to the treatment, although he will likely feel feverish and flu like symptoms as a result of the Coley's. Some promising research and studies have been conducted with Coley's and sarcoma. Although it was developed in the United states and is actually manufactured in Canada, the treatment is not approved by Health Canada or the FDA to be administered in North America. (for more information on Coley's Toxins and sarcoma, click here) Since there are minimal side effects, Dr. Bethel believes Kyle could continue use with Votrient if it proves to show some effectiveness in the scans that will be reviewed next week.
We will be making final arrangements on Monday with the IAT clinic, and plan to leave Toronto on Friday to travel to Freeport. We'll drive, with Kyle's Dad, Kevin to Fort Lauderdale, FL and then take a three-hour ferry from there to the clinic. We're aiming to arrive in Freeport by December 5th and start treatments right away.
This has been a huge decision for us, but it's necessary to begin new treatment as soon as possible, especially with the recent news of tumour growth. From the research we've done, the recommendations we've received and the discussions with Dr. Bethel, we feel this is the best course of action right now.
Again, we want to thank you all for your kind thoughts and prayers, and your most generous support. We will write again as soon as we can.
With love, K&V