Thursday, June 22, 2006
Coat of Hope ............
Here is the final draft of the clothes for "SPll". She should be dressed by the end of this month - she is already ready to roll, chomping at the bit to get this out there and on the road, as are we!
We have named this rv SPll. The first one we had, the one that burned on Christmas day last year, was named "Skilpad". A skilpad is a tortoise. So.
The other picture I put on here before had slightly different wording. We all felt these were more appropriate.
The logo of the Corporate Angel Network will be added on afterwards as will the www.penniesforcancer.com website as well as the names of those that want to 'ride with us', and of course, the signwriter that made this all possible - Billy T & Tom Signs! :-) This is definately going to be a vehicle that will grab attention everywhere we go!
I will post those photographs as soon as we have them.
And Steven is doing just wonderfullly! The visit to Vanderbilt is way behind us for now and the prospect of that next bone marrow aspiration looms, but not too closely - yet. The doctor has told us that Steven is in the second stage of remission - CCR, which is wonderful news. We are still waiting for the PCR results. I could tell you the full name of PCR, but unless you are dealing directly with CML, it wont make things any clearer :-) It is a great space to be in with Steven doing so well. It does leave a little hole, sometimes a big hole, in everyday life. I have become so used to "having to" worry about Steven bloods and now its all going so well, there is almost no point. It was REALLY good to see that smile and glint in his eyes when he heard Laura's results and his good ones too. I am sure it takes a large load off his mind.
We got some absolutely wonderful news about Debbie-in-Seattle's daughter, Laura - she reached PCRU which is basically 'leukemia undetectable" this week! She now has a number in Zavies Zero Club - number 982 - a number I will never forget. This helps so much with the hope we have for Steven and its such a help being able to share this journey with Debbie, knowing that she understands my hopes, and has the same wishes for us that we have for them.
I do find that at times I am very tired, tired of the learning curve, tired of the waiting for test results, tired of trying to figure out what means what. At the same time knowing that the waiting and the learning will not stop. But I am learning to deal with this better and better as the weeks go buy and I dont have this insane need to see my child (sorry Steven!) every day. And I do know that my tiredness is nothing compared to what Steven is dealing with. So.
The time is getting close when we leave on the trip and I am going to have to wrap my mind around letting go of all the reading and deep involvement I have been doing these last few months. We will have internet access, one way or another - but I hope that I can let this go to a large extent, at least most of the time, and enjoy the ride. I KNOW I will enjoy the ride and I know that it will take a few days to let the past months find a new place in my life, at least for the duration of the trip.
My camera has shaken of its cobwebs and is yelling for attention - I must get back into practising night photography in the hope of catching those northern lights. We have stocked up on memory chips and anticipate another 10000 or so photos from this trip. The last two produced around that number each - a wonder to look at - even now :-)
Please pass the word around on our www.penniesforcancer.com website - and go and visit there yourself. Many artists from all over, and different countries, have kindly donated their artwork for download in exchange for a donation that will go to the Leukemia Society in honor of Steven and/or the Alberta Cancer Foundation in honor of Penny. This is an ideal way to Pay Forward and really make a difference in all our futures - yours too. Lets get this ball rolling and stand together to do something really worthwhile.
Again, congratulations to Laura on the wonderful results and your Zero number! And Jon G, who was diagnosed at the same time as Steven - Great Results! Keep those numbers going down, down, down! To everyone else that is so wonderful and supportive, and to those reading and answering my questions on the Asia Yahoo board, and others too - I hope you know how much it counts - more than I can explain. Everyone that reads this blog helps in a way - it lets Steven know that people care and are counting on him to do well. And me too.
If there are any more of you out there that want your name on the motorhome for the ride - email me - we have place for anyone who has CML and wants to go along with us!