champions, hero's & fighters

Hi everyone,

My sincere apologies that it's taken me so long to write an update on Kyle. The last month or so has been a whirlwind, at times filled with some pretty extreme chaos and highs and lows.  

Going back to May 25th -- I cannot believe it's been so long! -- Kyle had his first round of Doxil (Liposomal Doxorubicin) chemo at the Hillman Cancer Centre in Pittsburgh.  The 25th and the days following went pretty much to plan...he experienced a bit of nausea and fatigue, but overall the side effects were pretty mild.

The week following chemo, we were immediately in touch with the team at Mt. Sinai here in Toronto and put the pressure on to get access to Doxil in Canada. After paying an astronomical amount of money for Kyle's first treatment, it was important that we did everything we could to try to get subsequent treatments covered, at least in part by OHIP or by Kyle's private insurance company.  However, to get payment assistance, we needed to get him treated in Canada.

After several days on the phone and trips back and forth to the hospital, we received good news!  We were told that the manufacturer of Doxil (brand name Caelyx in Canada) was able to release the drug to Dr. Blackstein for Kyle's sole use at Mt. Sinai, since he was now considered to be an 'existing patient' on this drug.  If you remember I explained a while back that since the supply of Doxil is so limited, Health Canada restricted the use of the drug exclusively to existing patients because the supply is being rationed for those already receiving and having success with the chemo.  So, therefore since Kyle received one treatment of the drug in the US, he could now be considered an existing patient - a bit of an unexpected loop hole, but made the trip down to Pitt and the $16,000 it cost, that much more worthwhile!!

We consulted with Dr. Blackstein a few weeks ago and decided to stay on track with the original plan for Doxil - two treatments (the second of two was scheduled for June 27th), then plan to have a scan done of Kyle's chest and heart to measure his response and the efficacy in resuming with the treatment.    

In the meantime I contacted Kyle's private insurance company to inquire about coverage for Doxil, since we were told by OHIP, our provincial health care system, that they would not cover the cost of this drug, since it's not 'indicated' for Kyle's specific type of cancer.  This fact blew our minds, but rather than putting up a fight we took another approach.  Much to our surprise, the private insurance company came through and told us Kyle would be covered for approximately 80% of the cost...and the cost is SIGNIFICANTLY less than what we paid in Pitt. -- Total out of pocket would only be about $1000 per treatment.

Although Kyle's second treatment of Doxil on June 27th went off without a hitch, it was a very difficult day for both of us. We had just received news that Kyle's friend and teammate, Chris Sanderson, who was fighting his own battle with brain cancer, was in his last days. Kyle was shocked and struggled tremendously with the news. He said that even though Chris' prognosis was not good when he was initially diagnosed almost 4 years ago, he believed without doubt that Chris would somehow overcome this horrible disease. 

That day at the hospital Kyle talked a lot about Chris; he told stories about his unique sense of humour and reflected on all the good times they had together over the years. He talked about how much he admired Chris' courage and all that he had accomplished even while he was fighting cancer. Chris was a major influence on almost every aspect of Kyle's life; he was the perfect and ultimate role model.

Since Kyle had chemo on June 27th, he wasn't fit to travel down to New Jersey quickly enough to say goodbye to Chris. We planned to go visit him the following week, however on Thursday, June 28th, Chris passed away.  We had the opportunity to make it down to New Jersey for the funeral on July 2nd - It was an extremely emotional but beautiful service... the perfect tribute to a true warrior. 

Kyle and I find it difficult not to reflect on our own situation as we think of Chris, his family and the epic, but eerily familiar journey they travelled.  Chris' wife Brogann is an inspiration to me in particular; her demonstration of love, determination, control and composure throughout their fight is truly remarkable.  We will continue to draw on the Sanderson's strength and example as we move forward and take steps in finding the right treatment and path for Kyle. 

After leaving New Jersey, Kyle surprised me and told me we weren't going home right away, but going to take a few days off to relax.  We drove to New Hampshire to the most beautiful and peaceful place tucked away in the mountains...the views were absolutely breathtaking! On one of our days there, we went up a chair lift to have lunch at the top of Mt. Washington.  On our ride up, unexpectedly...Kyle asked me to marry him!  He told me how important it is that we continue to live our lives despite all of the adversity and that he didn't want cancer to stop our relationship from moving forward, as it should... of course, I said yes!  As you can imagine it was very emotional, but we are very happy and excited to have something positive happen in our lives and we're looking forward to celebrating with friends and family sometime next summer!

On our drive back home from NH last week, Kyle suddenly started to lose his voice...he didn't have any other symptoms that made us think he was getting sick, however he had a mild shortness of breathe associated with a very hoarse voice.  We waited a few days to see if things improved, but after six days he didn't seem to be getting any better.  We contacted Dr. Blackstein, who was away on vacation, and after speaking with him about the risks we decided to go to emergency and have Kyle checked out.  We were told his voice could be effected by any number of things, but they speculated that the cause was possibly tumour growth - there is a nerve that effects the voice box which runs into the chest...its possible that this nerve is being pinched or encroached by a tumour, which could cause Kyle's voice to be hoarse.  After nearly two days of tests (including a CT scan) and waiting in emerg, we were told that Kyle's tumours are stable - there are no increases or decreases in the size or number of tumours in Kyle's chest.  Of course, Good news!

On Tuesday, we had a big day of appointments and additional tests lined up that we hoped would give us answers for the next steps in Kyle's treatment plan.  He had a MUGA scan done (test to measure  heart strength) and all is ok...the last two rounds of chemo had a marginal impact on Kyle's heart, but he is strong and well enough to continue on with the same chemo for now.  Next, we saw an ear, nose and throat specialist who put a tiny camera down Kyle's throat, through his nose to determine whether his vocal cords are moving as they should.  The specialist determined that Kyle's left vocal cord (same side as tumours) is paralysed.  Similarly to the emerg doctors the week prior, he explained that typically a paralysed vocal cord indicates that pressure of some kind is being applied to the nerve that runs into the chest and affects the vocal cords.  However, he went over Kyle's recent CT scans and couldn't see anything that would explain his symptoms.  If necessary there is a small procedure they are able to do on the vocal cord which would improve his voice, however the doctor would like to wait this out and see if it resolves on its own.  Lastly, we had a quick visit with Dr. Blackstein on Tuesday afternoon, who agreed with the ENT specialist...he viewed the scans himself, as he always does and said he doesn't see any tumour growth or an explanation for the onset of new symptoms.  The mystery continues and it looks like we're just going to have to wait this one out...as Kyle's dad suggested, we're hoping this is just a case of the engagement jitters!

Moving forward, Dr. Blackstein recommended that Kyle should continue on with two more rounds of Doxil - he will have his next chemo treatment Wednesday, July 25th and then again on August 22nd. 

Tomorrow morning we're off on yet, another road trip -we're heading to Atlantic City for the Powerball Lacrosse Tournament where we'll join friends to cheer on the Reebok Blacks Out Cancer team for the weekend...a team that was formed to honour Chris and Kyle; champions, hero's and fighters in the eyes of so many.

Talk soon,

Vanessa

xo