A very long, long weekendby Kyle & Vanessa on 05/22/12
I've been meaning to get on here to update you all for days, but things have been so hectic I have not had even a second to do so. The last week and weekend have been pretty rough, both emotionally and physically...lots of ups and downs and lots of pain for Kyle.
As you know, over the last few weeks we've been desperately searching to find liposomal Doxorubicin (Caelyx, Myocet or US brand name, Doxil) for Kyle since his CT scan at the beginning of May showed some improvement after two treatments of Dox. Well, very much to our surprise we learned that this stuff is next to impossible to get. Dr. Blackstein and the pharmacy team at Mt. Sinai did everything in their power to access a supply of one of these drugs, but failed to come up with anything.
Early last week we contacted Dr. Weiss, an orthopedic oncologist in Pittsburgh who we were put in touch with back in October when Kyle was first re-diagnosed (he was the doctor who was helping us out when we were considering LMTP-PE chemo in Houston at MD Anderson and in NY at Sloan Kettering). Dr. Weiss is an incredible guy and has been a friend and advocate throughout this whole process. Anyway, we contacted him to find out if any of the doctors he's connected with had access to Doxil. Right away he told us about Dr. Hussein Tawbi a medical oncologist at the Hillman Cancer Center in Pitt (Dr. Weiss' hospital) who he knew was using Doxil and thought he may have a supply of the drug. Dr. Weiss immediately connected Dr. Blackstein with Dr. Tawbi to discuss Kyle’s case. Within hours I spoke with Dr. Tawbi who agreed to take Kyle on as a patient and explained it was crucial that we get to Pittsburgh to see him right away, since the hospital's supply of Doxil is extremely limited...we set up an appointment to meet with him the following morning (Friday). We packed our bags and were basically out the door until suddenly Kyle started to feel very ill; he quickly spiked a high fever and was physically shaking from the chills he felt in his body. We had to put Pitt on hold and headed down to the emergency room to have him checked out. After several hours and tests, we were relieved to hear that he'd most likely just picked up a flu bug...his fever came down and he started to look and feel better, so we went home.
On Saturday Kyle was much worse; although he didn't have a fever, he started to feel shortness of breath; he was very pale and had a lot of aches and pains in his back and joints. Again, we went to emerg...they did an x-ray and CT scan of Kyle's chest and within a couple hours found that Kyle had pneumonia...Like SERIOUSLY!??!? Doesn't he have enough to deal with already!?!
So, they started Kyle on IV antibiotics immediately and said he would likely be discharged that night, but would go home with oral antibiotics that he'd have to take for a couple of weeks. Before being discharged the nurse came to check Kyle's vital signs...it was downhill from there. According to the monitor, Kyle's heart rate was rapidly changing from around 80 (normal range) to 220 (normal range if he were running a marathon). Several doctors came in to check him out and although the machine was going nutso with warning signs and alarms, he felt completely fine. They started to go over several different scenarios to explain the elevated heart rate (scared the bleeeeep out of me!!) and moved Kyle into a critical care room where his vitals could be monitored more closely. He was transferred into the new room at around 8pm...as soon as they hooked him up to the new machines, he was perfectly stable...steady heart rate, good oxygen level and blood pressure. They told us that internal medicine had to review Kyle's case and that even though he appeared to be ok, they wanted to continue to monitor him. We waited for hours and hours and finally around 1am we saw the internal med doctor who said she thought the machines were faulty and that she predicted Kyle's heart rate didn't really act up the way the machine told them it had. Of course more tests were required to confirm Kyle's heart was in good shape. By about 2:30am everything came back normal and we were free to go.
The one positive piece of news we received was that the radiology report from Kyle's CT scan indicated his tumours have not increased in size compared to his last scan taken at the beginning of May...I guess it was worth the wait!!
It felt like a very long, long weekend, but things are looking up...Kyle's breathing has improved a bit and he's in less pain than late last week. Unfortunately, the whole pneumonia thing may affect Dr. Tawbi's chemo plans since the infection will likely have to clear up before Kyle is able to receive treatment. In the meantime, we drove to Pittsburgh yesterday afternoon and we're set to meet with Dr. T at 1:30 this afternoon to come up with a new game plan. We'll also meet with their social work team to discuss the financial side of this route...unfortunately Kyle's private insurance will not cover the drug or any of the medical fees here in the US. With the help of Dr. Blackstein we submitted an application to have some of the costs covered by OHIP (our provincial public health care plan), but Dr. B doesn't think it's likely they'll come through, since this drug wouldn't be covered by OHIP, even if it were available in Canada right now. Anyway, we've decided we need to proceed regardless of the cost, seeing as this is the best option for Kyle right now...we'll figure out a way to facilitate it all once we get the facts and a plan.
We'll keep you updated on what happens in our appointment today. Thank you all for the love and support over the last few days...it really means a lot to us!
Also, we want to send a HUGE thank you to Dana Rondeau and her team who organized the Tradition Lives lacrosse tournament in Red Deer, Alberta this past weekend. The tournament purchased nearly 200 Beat It. hats to give away to the players in each game who displayed hustle and heart! Thank you again for your tremendous amount of support!