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!

Tuesday, December 16, 2008

The Comeback Kid

It is hard to describe the person Ryan was after having 3 serious seizures in a row. The best word that I can come up with is hollow. The nurse in the trauma area said that it was like the lights were on, but no one was home. How could my husband go from his big grinned self to that in a matter of two hours? But it happened.

The amazing part of it all is that yesterday morning when I went up to the hospital, I could tell right away that he was back. The smile he gave me when I walked in the door and the speed of his speech were telltale signs. The doctors will likely let him out today and we will bring him home to rest here. Then he will restart his radiotherapy treatments on Wednesday and go from there.

He will continue on the steroids to prevent future inflammation again, but it is a continued risk and one we now know much too well. To be honest, I feel much more scared now than I did when I ever heard those risks the first time.

The last few days have blurred into what seems like weeks and I can't believe that we are one week away from Christmas. Our family will be continuing to make some adjustments to life where we don't want Ryan left alone and where I will likely be driving him to his daily treatments so he never has to worry about not being able to say the words "call my wife" again.

Ryan's mom is still in town until things settle down a bit and my mom is flying in today to offer Talyn a constant through this all. I will continue to take deep breaths to keep my perspective on the today and continue to ask you all for your positive thoughts and prayers to help Ryan through the remainder of his treatments safely. He has done amazing things so far, so why can't he continue to be at the far end of the bell curve?

Sunday, December 14, 2008

Ryan's Fight

Ryan started radiotherapy on December 2. But the day before that, he had a mild seizure. This was the first day for us that reality started to hit us right in the face. Ryan has only ever had one grand mal seizure and that was in 1997 and before they ever found the tumour. So, although the doctors had told us about the significant progression, we were able to dismiss their news because Ryan was doing so well.

On the evening of December 1, Talyn and I were sleeping and Ryan was in the basement watching a show he likes. He describes a sensation of tingling all over his body and then knew he had to get to me. He got himself up the stairs and turned on the light to our room and by that time he had lost the ability to speak and fell to his knees to get ready for more. For the next 5 minutes his vision got fuzzy, he couldn't speak and we just waited for more. After 5 minutes he started to return to normal and we were hit with a cold dose of reality.

The doctors checked him out the next day and increased his anti-seizure medication, but seemed pretty relaxed about everything so he continued on with his treatments. He immediately felt much fatigue, but otherwise continued to feel well.

On Friday, December 12 in the morning, Ryan had a very similar mild seizure and after 5 minutes he returned to normal. So, after we knew he was okay, I drove Talyn to school and went back to my other life. Someone from Ryan's office drove him to his treatment that morning, but when he got there he felt off.

He went to go find his radiation therapists but by the time he got to them he couldn't speak. He then started to seize for 9 minutes. They called a Code 66 on him (a code the we listened to many times for others at the hospital) and the ER doctors rushed over to get to him. However by the time they got there, he had had a second seizure. They administered some meds to try and stop them and he seized a third time. I arrived to the hospital shortly after that and they took him to the ER.

There were many scary things about this. One was that there was 3 seizures in a row, but more concerning was that he wasn't able to regain all of his functions completely before another one came. He was rendered paralyzed on the right side and could not speak. They ran a CT Scan of his head and found inflammation, which can be a side effect of radiation. So they started to give him some steroids.

Throughout the last 2 days, we have watched Ryan regain most of his speech and all of his right side strength. He does continue to have some problems with language and vision, but they think that as the steroids continue to attack the inflammation, that should all return. He has spent the last 2 days in the ER while they wait for a bed and last night he was finally moved to the Neurology Unit.

I continue to be amazed at how alone I felt when this happened, but how in the background everyone worked around us to create a plan for Talyn and to make sure we were okay. So many people have helped us get through the last couple of days and I want to send a huge thank you to you all! We hope that Ryan will be let out of the hospital tomorrow and then we will chat with his Cancer docs to see if this changes the plan.

So many times before in my life I have seen mugs, magnets or books with various sayings like "live like there is no tomorrow", but I continue to find out exactly what that means. Life is a gift, continue to cherish it and those around you.