Monday, December 22, 2008

Coming back down and then up again...but in a good way!

We have been trying to settle back down into a routine ever since Ryan's hospital adventure, but we can't quite seem to get there. Ryan was scheduled to start back on daily radiotherapy treatments last Wednesday, but when we got there we found out that for the first time ever they could not treat patients. A virus had gotten into their servers and they sent everyone home. At least it provided Ryan with a little warm up to going back to that place and he of course made me take him by the room where they called the code on him (for those of you that know Ryan well, you can laugh now at some random memory of him showing you every place he ever lived, worked or went to school).

He has now had 5 more treatments (a total of 13 now) which gets him closer to the goal of 28 in total. We are still playing with his medications to try and get them just right. Everyone is of course concerned about this same scenario happening again, especially with the potential aggravation of the tumour once it is zapped some more, so we are watching him carefully. In fact Ryan can't really even daydream anymore, because once he stands and stares at something for more than 20 seconds, I am right by his side asking him..."are you feeling ok?".

He is on a combination of 2 types of anti-seizures medications and a steroid to try and control the inflammation. Every time he gets a little "ceiling fan" as he calls it (literally a small ceiling fan pops into his right peripheral vision for about a minute), we have to increase some of his anti-seizure medications. The doctors say this is a minor seizure and if left to its own devices, it could turn more serious. Ryan's ego of course gets in the way for a few minutes after I tell him that we have to increase his meds again, but then he quickly backs down when I remind him that we're doing it so that he doesn't have to eat hospital food for 5 days again!

So that's the "how's Ryan doing physically" news, which is really only a small part of the story these days. The day after Ryan got home, we gave the okay to an amazing group of women to release a Press Release story about us in Calgary. This group of friends had met the afternoon that Ryan was in the ER (which had been planned as their first meeting for some time) to discuss how to raise the funds Ryan needed to do the treatment of Avasting at $10K/month. When they heard the news during their meeting, it brought even more urgency to the cause. They felt that issuing this release to the press before xmas might be a way to raise a bit of money into the account they created and we did it to communicate our message of perspective on what the holidays are really about.

A few hours after the news release, Tricia (our seasoned media contact), got some calls. Over the last week we have gotten the opportunity to communicate our message on CTV, Global, through the Calgary Sun and Herald and on two radio shows (some links are on Ryan's blog). We also knew that we might have had some people generously donate some extra xmas funds to Ryan's fundraising initiatives, but had no idea about what was about to happen.

A local businessman Brad Field, a husband & father of 3, arrived at our house with his wife Sheryl and daughter Haley to give us an early gift. He said that he had seen our story in the Sun and wanted to help out. They presented us with a card and inside was a cheque. Ryan was holding it and I do need glasses for details far away and at first I thought the cheque said $6,000. I couldn't believe my eyes...a complete stranger wanted to give us enough money to pay for close to 1 treatment - how could that be? I said thank you and then I glanced down to confirm this amazing contribution and my jaw dropped open. The cheque was not for $6,000, but for $60,0000!!!! This man and his family had dropped by to provide us with the ultimate gift....payment for 6 months of treatment for Ryan and really, giving us the comfort of knowing that he can go ahead with his best shot to live!

After that happened, we spent the next day in shock. We kept looking at each other to confirm that it wasn't a dream and that the night before had actually happened. Earlier that day, I had talked to the drug company and they agreed to cover 20% of the costs of the drugs throughout. So in the matter of one day, we had received $84,000! It's hard to verbalize exactly what this meant to me, but it has really given me a sense of peace in knowing that Ryan is now able to do everything possible to fight this and the rest is really out of our hands. We had some thoughts go through our heads that this still might be Ryan's last christmas with us, but only a very small amount compared to what could have been.

So now there is much less worry that goes on in my head each day about the future and I am much better able to stay in the present. My mom is here to help and we are just ensuring that Ryan gets the rest he needs. The doctors told us that seizures are most often brought on by fatigue, so please help us in ensuring that Ryan doesn't spend too much time chatting with you on the phone and that he gets only 1 visitor a day. You know that he loves to socialize!

I hope that the holidays were good to you all and that if you did see our story anywhere, you took from it what we had hoped. Live each day to the fullest, don't worry about the past or the future, just be thankful for today! I hope the new year brings you all health and peace in knowing that this world is a beautiful place. If you ever wanted to believe in miracles, now with Brad Field's amazing contribution to Ryan's future, you can!

1 comment:

  1. Dear Tasha,
    We are still celebrating the wonderful news of Brad, Sheryl and Haley Field's surprise visit to your home with their gift of $60,000. Your account of the moment that you realized what was happening is charged with a whole range of emotions - shock, delight, gratitude, relief, comfort and even a "sense of peace". You are able to describe for us the multi-layered impact of this "ultimate gift".

    In the midst of all this excitement, you have also anticipated the question that remains constant in our minds: "How's Ryan doing physically?" Thank you for that!

    We appreciate your straightforward comments on where Ryan is at with his radiotherapy treatments, his medications, his seizures and his need for rest. The concrete details that you provide really encourage us to stay with Ryan in his ongoing battle. You and the people closest to him are so watchful and supportive of Ryan as he fights his way back to good health. We will continue to send positive thoughts and energy from afar.

    I have to say that Ryan looks strong and determined in his STUPID TUMOR T-shirt. We always look for new pictures on your blog site. It's great to see Talyn enjoying a visit with his aunt and uncle, spending quiet time with his Papa and enjoying a festive family meal. Your choice of happy images shows that part of the beauty of Christmas is in bringing family together.

    The friends who met and encouraged you and Ryan to go public with your stories had perfect timing. Miracles happen all year round but Christmas seems to abound with them. We are so lucky to be watching this one unfold in your lives.

    May your new year's wish for our health and peace also come true for you in 2009!

    Sincere well-wishes,
    Louise and David