Sunday, May 21, 2006

The blood counts

And the next test is in. Apart from low (3.2) white blood count and platelet count of 141 which is also a tad low, Steven's blood counts are doing good. Now I am off to go and read about what happens when these counts are low. Thankfully they are not too way down there and the next test which is another two weeks away, will tell more and hopefully even see these settled down. But its good..... On 14th June we are headed back up to the specialist at Vanderbilt, Nashville and that test will give us an even better idea of where 'things' are headed.

I find myself smiling at referring to cancer as 'things'.......... just the fact that it brings a smile to my face, makes me wonder at the long road already ridden in this journey - in such a short space of time.. and this brings another smile in knowledge that we are, after all, dealing with this - so far.

Steven is looking good, but tired today. But hey, its weekend and everyone that age should be tired after a weekend! He is obviously enjoying the car with the new motor in it too.... nice to see him and Laura smiling and getting on with life. And good to hear how healthy that car sounds as Steven 'guns' it down the road for the benefit of his mama who is standing watching! :-) I told him to do that for me and he had no objection to complying...

I find myself breathing easier again - its always like this around a test time - my blood pressure rises, I find myself a tad rattier and tense and then it all evens out again when I get that hug with the piece of paper that says "its ok". And then it is "ok" again, until the next test looms.

I was thinking just today, that we really are SO lucky! Steven is healthy otherwise, is a 'kid' that looks after himself, leads a drug free (apart from Gleevec, obviously) life and has a plan for his future. Imagine having to try to care for a child/person that was already on a 'self destruct' path..... I could not imagine the worry that goes with that.

I have also been thinking about something a friend wrote- how does one live knowing that you cannot plan for a future - is it even possible to live 'in the moment' without thinking about the future? I dont know, my friend, I dont know. I tried to do that numerous times today, and failed. Just know that that question alone has made me even more grateful that I can plan ahead with reasonable expectation of being able to carry out those plans. I hope to hang on to that thought for a good long time, Penny - and I know that as long as I have a future - you will be in my heart.


Friday, May 19, 2006

The Car is Done!

The motor is in the gauges are in and the smile is permanent......... :-) This is what Steven has been working towards for almost a year now, saving, buying parts and dreaming of the time that he could get this done. And now it is done and he is thrilled. He had a wonderful group of friends working on this project, fine tuning everything to perfection.

Driving away after showing us, he revved it up - boy does it sound goooood............

Tuesday, May 16, 2006

Bouncing around

Everything is going well. Steven still has virtually no side effects. Sure he gets tired, but he works hard and is still working on the motor swop for the 240sx. Generally he is doing just great. The weather is starting to be beautiful more often than not and business in the shop is picking up again. I got the prints of my paintings - they look good, and I have a meeting on Thursday that will hopefully be fruitful towards getting the motorhome 'decorated' with the Leukemia Society logos.........

And I read the boards and newsgroups where everyone is so helpful, positive and full of information. Mostly I get a 'lift' from these messages, mostly. I have to admit that I have been riding high on trying to get the fundraiser going, letting it take most of my days and thoughts and energies. I think I have been hoping that if I just believe that all will be ok, then we can all go on with our lives 'as normal'. I forgot that the old normal is just that - the old normal. The new normal is still a foreign animal............and it bites at the most unexpected times.

I read of blood counts bouncing around, of people coming out of remission, of mutations and mutation tests. I read that even after many many years, this is an issue that is really high up on the scale of things in daily life. For a while there I tried to tell myself that this was "like diabetes" - Yea, well, that sure did not work! Or maybe its just because Steven is getting closer to another blood test that my nerves are beginning to get raw again. Or maybe I simply need an early night. Or maybe its because its going to be SO difficult to be away for two months after being so closely involved in this process! I really hope that our plan to get Steven and Laura out to Oregon to see Dr Druker works out......... we will get to see them there too. Maybe us being away will be good for Steven too - give him a breather without the 'worry wart' just up the road :-)

Whatever it is that is dragging on me a tad, is very irritating. I want it to go away and go away now. I still get angry every now and again, but not for long - there is not point. It's probably not anger at all, just frustration at learning new ropes. Whatever it is, I sure hope it leaves soon.

Ok - enough of that! The prints of the paintings look really good! 8 x 10, selling for a donation of $20 each. Send positive wishes that we sell all 1000 of them and have to make lots more. Pass the word around or let me know if you want one - the email contact is on the left of the main page of this blog.

We are going to be in the newspaper again this week - and in there will be the request for help in getting the logos on the motorhome. It will really make such a difference having the LLS logos on there. We are starting a list of the names of people who have CML and want their name on the MH too - I hope there will be many..........if we cannot get the money together for the logos - we will simply fill the sides up with names. If you have CML and want your name on our motorhome for the ride - email me! Just your first name and initial of your last name. Tell me a bit about yourself, but only if you want to - I won't share that information at all. Ride along with us - this trip is for all CML'ers.

And so another day ends. We are both SO looking forward to that open road, to being able to kick back and relax and just drive............

Please dont forget to keep checking back to see when our site is up and running - it should be anyday now! Thats a really exciting project...........

If you are reading my blog, you are involved in or care about someone with cancer or some other illness. Never forget to Pay Forward. Someway, somehow - pay forward. It may be in a kind word, or action or in a donation, or simply a positive thought or prayer.

Pay Forward - it's what gives us power.


Friday, May 12, 2006


Well we made it throught the first tv interview - and we have the first newspaper article in todays paper - Chattanooga Free Press. Its good! So you get it here too...........
If you know of anyone, any company that would like to donate, help get the motorhome decorated and walk - please dont hesitate to contact me! We have the expenses of the trip covered - just not the painting of the motorhome...............Thanks!

Wednesday, May 10, 2006

New Results

Steven had his blood test this past Sunday............ and once again, all is looking very well! All the blood counts are either within normal range or really close. Each place gives the results in a slightly different way, which sometimes takes some digging around to sort out - but we got there. Steven looks good, he feels good apart from being tired and this is a side effect, but it is not bad enough that it stops him from getting on with his life.

This process of being relieved at the results, coasting for a few days and then starting to build up to the next test, is already getting easier but will take a looong time to become 'normal'. Every time I think about it, I cannot help but be thankful that he is reacting so well, can go on with his life with relative ease and that, right now, life is relatively easy with this disease. There are so many people out there that don't have the hope that we do with Steven, they dont have the comfort of knowing that they will survive their cancer and their families must feel so tremendously powerless in the face of this all. I know that I feel "power-full" right now because Steven is doing so well and I can use some of my time doing and thinking other things too. I remember all too clearly that feeling of absolute helplessness I had in the beginning of this road - it was not a place I would like to revisit.

Pennies For Cancer is fast becoming a reality! It is really an exciting opportunity to make a difference over a long period of time......... we hope to have the "real" web site up by this weekend and cannot wait to see what Adi is doing with it.

Our Alaska fundraiser is going to be in the local newspaper this weekend and again next week Wednesday! Hopefully this will help get the story out there and light the fire of success under this journey!

The Leukemia Society has given us permission to use their logo on the motorhome and will supply the artwork to have the graphics put on the sides of it. Now we are looking for a company, person/s to help us pay for this. We are doing the trip, but cannot afford to decorate the motorhome as well. The fundraiser depends on this - we have to be tremendously visible in order to grab the attention of the media and people as we travel and keep the interest alive and the donations flowing! Any ideas or help on this will be tremendously welcome..............

I have to do some serious work on the RoadRunnersUSA site as this will be our update site for the Alaska trip and will be the place for all the information on anything relating to that.

Please visit - if you have artwork you would like to donate, please email me either directly or at

Please sign up to walk Light the Night, help fundraise and tell as many people as you can! Visit and register with us - Road Runners USA team - Steven and Laura will be walking at Coolidge Park, Chattanooga and if we are not back by that date, we will walk elsewhere. Please make sure that Steven and Laura have plenty of you with them - it will count for SO much! Thanks!

Penny, thank you. You have added a dimension to my life that I did not even realise was missing. Thank you!

And Steven, my boy, I love you!


Friday, May 05, 2006

Good Days........

Today I read this in an article found on Google......:
"Furthermore, doctors say they can paint a very optimistic picture for patients now diagnosed with CML. They feel these new agents are taking it from a controllable disease with long-term survival and moving it into a possibility for a potential cure -- even a cure at a molecular level."
Is that not fantastic information? Its amazing how a little sentence like that makes the soul sing again, makes the sun shine and gives me more 'oomph' to keep on going!

Steven is about done with his motorswop in his 240sx, looking tired from working the long hours at work and then working on the car at night. But its almost done. He dropped by here the other night and I filled him in briefly on all that has been happening while he was busy under the hood of the car - he was really keen to get it going, even being totally ok with having good photos taken and being interviewed on Tuesday! This is the same Steven that has created a million photos of his face behind his hand?? Wonderful! He also has the next bloodwork done this weekend - yes the tension builds but I am absolutely certain that he will be ok. And if he is not - we will make him ok! There is so much positive news out there regarding CML.

I have to say again that all the support I have been getting from our family and friends as well as everyone on the newsgroups and boards and through email has really been fantastic! The friends we have made, the laughs we have found, and the light in our life....... could it all be because of something as awful as cancer? Amazing, isn't it?

We have an interview with the first local newspaper on Tuesday morning and hopefully soon the tv and radio station too. This fundraiser "Road Runners USA - Ride the Road for Cure" is starting to take off now. Time is getting short and Frank and I are starting to make sure we know everything about the new motorhome and slowly getting it packed up! We are SO looking forward to being out there on the open road............. my camera is leering at me, resting as much as possible before it has to work permanent overtime hours!

And is fast becoming reality. Penny has an interview in Canada early next week with the Alberta Cancer Foundation and letters for potential art prints from willing artists, have been sent out. Now for the website to grow to what it needs to be and we will be rocking on that front too! Penny is such an amazing person - we have yet to meet and have only had one short telephone call where we both discovered that we had accents! At times I have a hard time staying even and less chance of getting ahead of this lady. When I feel that I am just too tired to think straight - there pops in yet another email and it energizes me. It is going to be absolutely fantastic to meet her when we head up to Alaska!

So, things are looking good right now. Please, please follow this link, join our team , Road Runners USA, to walk, and DONATE - every little bit will help. ALL funds raised go to the Leukemia & Lymphoma Society. And keep going back to to see the progress made there. Please also visit Penny's blog - she has so much courage, grace and strength that reading her story will enrich your lives too. It certainly did mine..

I will post Stevens results when I get them - hopefully not too long after he does the test!