Wednesday, June 28, 2006

Times of Happy Tears

What a week this has been. We got the results from Steven's PCR on Monday morning. I sat and looked at the numbers and the tears just fell........ they looked good, but I understood so very little about what they really meant and I felt so frustrated that I could not be happy and relieved without a single doubt! I was wondering if those numbers just looked good because I wanted them to. I saw what Dr K had written, but needed urgent confirmation that these results were good! I needed that booming voice that left no doubt. Funny how that is so often missing when most needed.....

So I immediately went to my trusted support group - the Asia Yahoo group. I frantically typed out all the info and hit "send". I hit the reload button frantically every 15 seconds, desperately waiting for a confirmation of what I thought the results meant. The site was slow. Very slow. I sat with pounding heart, sweaty palms and did not even tell Frank about the results coming in - I needed to know for sure first. The tears hovered right inside those tear ducts, just waiting to flow. And then the responses came in. By all accounts it seemed like the results really were great. I cried. With relief. Then had to interrupt Frank and a customer to share the news - by then it was bubbling over and could not wait. So we celebrated. And then I called Steven at work.

His first response was "no more BMB's!" Bone marrow biopsies. Unfortunately he will have to resign himself to having these done. He is scheduled for one in early October and is dreading it. I am really hoping that we can get that delayed, especially now that we know his counts are all going in the right direction. Would this be the right thing to do? SO many questions - all the time! We will ask his local doc for his opinion. We also have the amazing opportunity of meeting with Dr Druker before that scheduled date as well. Fortunately at this stage, nothing is urgent at all and we really do have the time to think things through before going one way or the other.

That was Monday. Tuesday brought more confirmation that the results were good, and I really started relaxing. Thank you to all those that emailed us and responded on the boards. I printed your good wishes out and gave them to Steven who squirreled them home with him.

And then this morning I wake up to find that the website has gone live! I have been working on this site for a good few weeks now and was hoping that Jim from would send it live! He did -Thanks Jim......! So now you can go to that site for all the links and to get to the updates we will send from the road. And photographs. Please go and look and bookmark that site. Please visit the other links on that page too - especially :-)

And then I got an email from Penny wanting to know if a Canadian artist who is putting a cd single out of Penny's song, could use "The Penny" painting for the cover of the cd! What an honor! I just sat and let the tears flow. I think I was just generally emotional today, but that was such a good feeling.........

And then I got and email from Zavie! Steven has a number in the Zavie Zero Club! Number 987. I did not expect this at all..........what a wonderful surprise, and the tears flowed again. By this time, Frank just looked at me from the other side of the room and brought me more tissues - I was definately blubbering a lot today! But it was oh SO good........... and so many good reasons...........

And I called Debbie in Alaska to share the news with another person that is in exactly the same position as I am. Her daugher is # 982 and Steven #987 in the Zavie club. I knew she would know exactly how I feel! Thanks Debs. :-)

And the response to the website has been wonderful! So many great emails, caring people - we hope to meet many of them along the way.......

I know there was more good to today, but its late now and my brain has hit the serious overload stage! Got to catch up on some sleep now.

What a wonderful day. A really wonderful day.


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 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 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!


Friday, June 16, 2006

Vandy behind us - for now

Steven, Laura and I drove up to Nashville, Vanderbilt, for his PCR test. The car is a small one, Steven is tall and he sits in a leaned back position which pushes his knees forward - right against the dashboard. It was a lovely easy ride up there and we were all relaxed.

He had his blood drawn and we were all amazed again at the positive vibe in that hospital. I started talking to a lady that was battling a third bout of cancer - three different types, each lasting 7 years. What a beautiful lady she is....... lovely face, lovely attitude and lovely laugh. Steven and Laura were also quite amazed at her attitude -as was I.

We saw the Doctor for a few minutes, everything is going just great so there was not that much to discuss ( maybe I am wrong?). I did discover that a PCR had been done when we first went up there, so when the new results come out next week, we will have something to compare them to! Dr K said he would email them to me next week sometime.

I wish for the day that I know what questions to ask while we have the doctor captive in the same room!

According to the doctor, Steven is into the second stage of remission. First there is the hematological remission when the bloods are all stable and then you get the cytogenic remission, and the much sought after remission is the molecular remission. We all know what we are aiming for......... CURE!! :-)

I find that the few days before this test I started winding myself up, then when it all seemed ok, I relax to much that I simply dont have the energy to write much about it - so a few days have passed since we went up there...

I have just discovered more questions that I need to email to the doctor at Vanderbilt.......

More later


Monday, June 12, 2006

Rising pressure

It's so easy to 'bury' worry under other stuff. Not easy to succeed at this, but easy to keep trying! I see the road that I have travelled from a mere three months ago to now. It feels as if I have lived at least one other full lifetime since that diagnosis - only three months, only. Wow. So much has happened, so many feelings, fears, wonders and a tremendous amount of learning.

But for me, at least, there are days that are easier than I could imagine. There are other days when it all gets too much and I sit at that computer and play games over and over again, sometimes so deep in a place that is difficult to describe. Is it dispair, anger or simple, raw fear? One day we took the motorhome down to the Riverpark and went for a walk along the Tennessee River - just to do something different. Even there we bumped into Cancer. A group of people sitting having a picnic next to the river were talking about chemotherapy and recoveries, remissions etc. My reactions to this were totally mixed - one second I wanted to hug the lady, the next - I wanted to yell to stop talking! There are days when I still just want to stop, when I desperately need to hear a laugh in Steven's voice, so I call him for some little and unimportant reason. And then there are other days that I am vaguely aware that I am just pushing myself to keep on hacking away at trying to get this fundraiser sorted out - that if I stop with the self pressure, I will not deal with the worry again.

This is like diabetes, I thought. Until I saw the emotional pattern of the blood tests. At this stage Steven has them every two weeks. The ups, the downs and the "cruising stage" of this bi-monthly ritual make me realise that this is not diabetes - and another pile of paperwork gets sorted out in an effort to divert my thoughts. Then the cruising stage starts right after the results come in being good and I relax only to have the pressure rise as we get close to the next testing. How does that old song go? "Round and round the mulberry bush, mulberry bush, mulberry bush............................" Is this something I will ever get used to, or at the very least be more relaxed about?

Talking about rising pressures, Steven has his first PCR test on Wednesday this week at Vanderbilt in Nashville. This will give us a good idea of where the cancer is going......... but there is about 3 weeks to wait for the results of this test - hair raising weeks. Steven, Laura and I will drive up there while Frank keeps the shop going again. I have not been too much good in the shop lately and thankfully we have been quiet - its that time of year. Maybe if it gets really busy, it will do me good.

I have to say that everyone on the Yahoo Groups boards have been keeping me sane with all their advice, knowledge and help. And Debbie, and Penny - what would I do without you guys??

Thats me for tonight.


Thursday, June 08, 2006

So Much Good News!

Firstly and most importantly - Steven is doing great! His last set of bloodwork came back with most readings right in the normal range and the three that were off, were only just out of normal range. Different places have slightly different sets of the 'normal' range, and so we are comforted that none of his readings are far out at all. Steven dropped by tonight to wash is car and eat pizza with us. He looks really good. Besides being a really good looking young man with a wicked glint in his eyes, he looks good :-) Ms Laura is away this week and I bet he has some house cleaning to do before she gets back on the weekend!

And we got Steven an appointment with Dr Druker in early September! We asked for a time around then as we should be close to that area at that time of the fundraiser. So that worked out perfectly. I had sent an email to Dr Druker's office and the Corporate Angel Network earlier, and as I was reading the response from Jennifer at Dr Drukers office, an email came in from the Corporate Angel Network saying that yes, they would fly Steven and Laura to the appointment in Oregon in a lear jet free of charge! Wow, wow and wow...........! A link to their site is on the left of this blog under 'links'.

What an amazing moment! So Steven and Laura will meet up with us in Oregon and then they will fly back again, leaving us to carry on with the fundraiser. We will be adding the Corporate Angel Network Logo to the sides of the motorhome and the websites. What a fantastic organisation they are! They fly cancer patients to or from any qualified cancer center free of charge - how amazing is that! Steven is thrilled to bits to be able to fly on such an airplane and its difficult to wipe the smile from his face......

It is absolutely fantastic to see something exciting happening for them while they deal with this CML and its amazing to see how much help is out there for people with cancer - just wonderful!

Yesterday my sister, Katie, called me to wish me happy birthday - no! I refuse to get younger - I have earned every wrinkle and gray hair! :-) She also told me that the Talk Radio 102.3 station was close by at one of the local stores doing an 'out in the field' broadcast. So I quickly put together a folder with information on Steven, the fundraiser and the need to Pay Forward. I put myself and this folder in the car - and drove down there. When I saw the whole outfit there I wondered at the person I have become. Then I took that bright yellow folder, marched across to the guys there during a break and introduced myself. Jeff Stiles quickly flipped through the file and asked me to wait a while. After killing a bottle of water - I mean literally -I squeezed holes in it from nervousness, they called me over and we went on the air! He made it so easy to talk about all this. I managed to say how wonderful Billy T & Tom Signs are, what we were doing, why and how. Really a great opportunity!

When I got back to the shop, within 2 minutes, the door opened and a guy came in looking around - he had followed me up from the broadcast to give a donation! That really blew me away. He was so sweet.

This week has been wonderful, totally amazing. I have learned so much and it feels as if this is all really going to happen. The best of the week was hearing Steven on the phone when I told him about the flight to Oregon! That was the absolootle bestest ever! :-)

Please spread the word about this fundraiser - together we can all make a difference to so many people!

A really big thanks to Corporate Angel Network and Billy T & Tom Signs and everyone else that has donated towards this fundraiser! May there be many more joining this list.


Friday, June 02, 2006

A Face to the Fundraiser!

Thanks to Billy T & Toms Signs in Chattanooga we will have a really good attention grabbing face to this fundraiser!

There are a few changes to be made and I will post the final pics as soon as we get them, but this is the general idea.

It's starting to look really good - with really big thanks to Billy T & Toms Signs and Gale B!


Friday's up's and up's...

So I left on time, tootled down to Steven's workplace and saw Lisa there too. She paraded me around the place telling everyone that "this is my mama!" A good feeling that she wants to do this! :-) I watched this child work with these enormous printing machines, pressing knobs, pulling levers, knowing exactly what she was doing, printing enormous posters for the circus and other places and really enjoyed the moment of knowing that she too, is growing up so beautifully. :-)

And then Steven hooked his long arm around me, yelled goodbye to everyone there and we headed to the doctors office. It was wonderful driving in the souped-up car, and we revved and sped and did that G-Force thing a few times - especially through the tunnel! A beautiful little self-satisfied smile played around the corners of his mouth and in his eyes all the way...... Really fun....:-) After hunting for parking and heading upstairs, we were recieved with blank looks when we gave his name - no appointment! They had apparently sent out a re-scheduling notice and Steven had not got it. Ah well, I got to spend time with two of my three sprogs - not a bad few hours spent at all, atall.. So Steven will have his blood drawn at the clinic again this Sunday and then we go to Vanderbilt for the PCR on the 14th. I will have to ask Dr K there all my questions.....

The motorhomes clothes were "computer fitted" today! We have the preliminary pictures which I will post in a day or so. There will be other names and websites added on to the motorhome - being one of them. We are hoping to find a few businesses that will part with some greenbacks for the privelege of having their name on there for the ride - and if we get enough of those - maybe we can even get the bakkie (pickup) decorated in a similar way!

I am really very aware that I am using this fundraiser to channel my energies/worries into. It does not make my caring or concern for Steven any less, it just turns it into positive energy for me. It is really great seeing Steven so interested in what is happening - I think the kids think I have gone insane, but nicely so! I love seeing their faces at the progress being made with this fundraiser....... I cant wait to see Joleen's face when we pick her up at Parris Island in the RV!!

The site has made it's first sale! and Penny has been busy adding artwork and information today. It looks wonderful now and will only get better as we add on more and more.

Now its way past my bedtime - today has has been such a good day.


Thursday, June 01, 2006

So much happening.. :-)

Blood tests again tomorrow - the tension gets a tad higher even when I see Steven looking so well. It is wonderful to see him laugh, joke and smile and get on with life. I had a dream the other night that had me crying again when I told Frank about it in the morning. In the dream we were all sitting on the floor of the lounge chatting away, and obviously, the topic of the leukemia came up. At this, Steven changed from the young man he is now, to a little boy of around 5 years old - I just scooped him up under his shoulders and knees, held him and we cried together...... Oh boy. I did not bet much sleep after that. I am everlastingly thankful that he is as old as he is before getting leukemia - it must be a totally different thing with a child much younger and still at home.... But they I think we all deal with what we are give. As I said before, sometimes not dealing with it is a way of dealing with it and I do believe that when it comes to our children, the majority of us learn how to deal with it in a manner that benefits the 'child'.

He looks so good despite having this leukemia in his life. Ms Laura is going on a cruise with her family - she deserves a wonderful break like that! Tomorrow I will go with him to the doctor again - bloods to be drawn and consult with Doc J. before the visit to the specialist at Vanderbilt on the 14th of this month. I have a list of questions to ask him this time. So many people on the support groups have amazing help and suggestions - I dont know what I would do without them all!

AND!!! ............................. Billy T & Tom Signs of Chattanooga have given us an absolutely amazing price to do the motorhome wrap! The balance due is totally within our ability to raise this money - so this is really going to happen.............. Tomorrow (Friday) morning, we have to take the MH down there for more measurements and to bash out the details of what graphics are to go on there. They have given this fundraiser the face it needed and we are so grateful for their willingness to help us in this endevour. If anyone is ever in town - give them a call and a big Thank You as well!

AAAANND!!! is up and running and you are able to purchase artwork there now............ this is wonderful that this project has grown wings in such a short period of time. Penny, her family and friends and Adi (the webmaster) has done magic with this. I am SO proud to be a part of it all........ When you have a moment, go to the site, look around and check back regularly - we will be adding lots more artwork really soon.

I will update again after the doctor appointment tomorrow and the meeting with Billy T & Tom.