30 September, 2006

28th September - Love and Light.............

With an absolutely glorious sunset the night before, a gentle pink sunrise, tears in my eyes and a song in my heart, we unplugged Skilpad, hooked up the bakkie and left the beach on Thursday morning - heading directly north and back to Tennessee past enormous Pecan trees, through solid rain storms and with rainbows egging us on all the way. I first wrote that we are headed home - but we are home. Skilpad has become that place, the place my heart is and the place I am at peace. Our home.

How does one describe two months of awe, wonder, love, hello's and goodbyes. How can the feelings be put into simple words and still convey emotions that run so deep? We have covered so many aspects of life in a relatively short time and so much has touched my soul in a way that has changed me forever. I had to go through some of the many photographs to remind myself of the order of our journey. Glacier Park seems so very long ago, while meeting Penny feels like just the other day, yet those two were only days apart.

There was no definite conversation or thought about us heading back at all, rather a gentle, slow feeling that we have done all we can and seen all we wanted to see this time around and maybe, perhaps, we are ready to go home. Perhaps. Leaving this beautiful Emerald Coast and heading north is done with a heavy heart and at the same time with a definite feeling that there will be a next time, more adventures, more discoveries and yes - more photographs too!

We have spent many nights sleeping in out of the way places rather than campgrounds, spending quiet evenings under bridges next to rivers, high in the mountains, simply alongside the road where we saw those glorious and stunning northern lights dance across the sky. We have slept in places that felt eerie in their loneliness and quietness, and we have spent nights where the glorious views spilled inside the motor home through the open windows making us just sit and breath it all in. Other places were so noisy that it pulled our strings and made us 'tetchy' for days from lack of sound sleep. And always we have been at home.

We have seen the wonder of Glacier Park, that ever growing and very meaningful Sign Post Forest, the incredible Alcan Highway; glaciers that took my breath away with their shimmering silver and blues in Prince William Sound and along the many roads traveled; we have been beyond-cold and breathless at some of the awesome mountains and valleys along the way. It rained much of the time up north which literally put a damper on the days, but looking now at the photographs, still rendered so many wonderful memories and views.

Those ice-topped volcanoes, the Pacific Coast and the enormous boulders standing guard offshore; the smell of the ocean and the enormous waves crashing endlessly onto pristine beaches; whales cruising in the blue waters, spouting as we watched; that wonderful winding road along the coast; the incredible feeling and sights of Zion - those deep canyons, rushing waters and totally awesome cliffs - the silence, the peace; the sky lit by fire and the deep darkness of starless nights and other nights where the stars danced like diamonds and the milky way was crystal clear; the open loneliness of endless roads that were beautiful in a different way too, and bright orange scenery that went on for miles. The boat rides, the train rides and the joy of finding some gold sparkles in our pans - (Thanks Nancy!); the peace and ease of being on the water, whether in a bay or on a river as well as in the crystal clear waters at the beautiful singing white sands of Florida beaches.

Some days we were on roads so quiet and gentle that I photographed the clouds, other roads were so busy I simply had to close my eyes and stomp on the non-existant brake pedal on my side of the motor home with sweaty palms and feet at times. Often we drove for hundreds of miles covering an incredible amount of distance in what felt like no time at all. Other days we moved mere feet. And always the camera clicked trying desperately to catch the beauty and wonder of what was around us.

We saw enormous wood mosquitoes that stood taller than ourselves; we saw bears where they were supposed to be and in places we least expected them. Wendy even heard a bear when ….. um, it was not a bear! That laugh particularly has a way of returning constantly! Moose we saw plenty of; mountain goat and caribou and normal little deer littered the roads along the way. Seeing the condor was special and being bitten by a fish was different and a tad insulting; we saw the fattest squirrel I have ever seen at Zion; saw sea otters in Alaska and bypassed the Tiger display at a gas station along the way.

All these have added up to an incredible journey. But, as the adverts on TV say: "But wait - There's more! And there definitely is.

When I summarize this trip in my mind it goes something like this: We left Chattanooga saying goodbye to my family, after stopping at Glacier Park, we met Penny and her family, then up to Fairbanks where we met Debbie and her family, met some wonderful people there, picked up Wendy, went down to Seattle where we met more of Debs's family and some more great people. Then Steven and Laura arrived to see Dr Druker and more wonderful souls. After that we went to Zion and then Texas where we met Gale and Bill. There were so many wonderful people we met and many that we did not get to meet this time around. Sometimes we did not even exchange names with those that came to talk to us, and others we shared just an evening or a short chat - but they all became woven deeply into the fiber of this journey. People became the foundation of this journey.

And the names on the sides of Skilpad. I have had to rewrite them twice now - maybe the fading is because of the sun, or maybe it was helped along by the daily act of running my hands over them all, thanking every one for the trust shown in riding along with us, and sending a positive thought to each and all of you as well as your family and support groups, whether they are still fighting the battle or lost the fight - we had you in our heart all the way. If I could change something, the names of all caregivers would ride on our sides too. Along the way, I fully realized the incredible importance of that support those fighting these diseases. I know that all your names on Skilpad are what really touched the many that saw us - your names made it real, made it personal and a good few hands draped their way over them all while eyes teared up and hopes were shared.

This adventure was so much more and so very different from our other journeys. The original idea was to gently tootle around the USA and western Canada as we have done before, but after Steven was diagnosed it changed to becoming my way of trying to apply that band-aid on a scratched knee that I, as a mother, could do so long ago. We had been dropped into the very middle of understanding the importance for research and progress towards the control and cure of cancers. It is truly wonderful that Steven's leukemia is now controlled by Gleevec and we really wanted to be able to contribute towards the possibility of a cure for this and other cancers.

So the People Connections started. After talking to a good few big companies about doing the RV wrap, Billy T and Tom who have a small, family owned, sign writing company in our area were truly fantastic in giving us a tremendous price to have Skilpad beautifully wrapped - they did a tremendous job of it too and I was really touched by their caring and concern and generosity. There was no way that we could not be noticed and many people were reminded of the movie "RV" - hmmmm … maybe that was not all good! LOL. Some people felt that we were very much and perhaps too much, in people's faces. Others said that it was good to be so loud and visible - what was really interesting was that those people that liked it were the ones fighting cancer right now!

We met people that just wanted to talk about their experience and move on - they did not all want their names on the motor home and a few did not even want to share their names with us, just a part of their story. So many times we sat inside and watched as someone stood and read the RV, some stood really close by reading even the names but as soon as they sensed us inside they quickly moved off - sometimes coming back later for more looking. We learned to sit very still and not talk, especially if the windows were open - reminded us of bird watching. When we sat outside, wide circles were walked around us, and we eventually we learned to smile about this and not to be upset - we started quietly making bets as to who would work up the courage to walk right by us or maybe even greet us. We also found that if we were busy with something like washing the bakkie or bikes or doing something else outside - that's when people would stop and chat. Us sitting and just enjoying the outside seemed to make people nervous - we could understand that totally!

In most instances, if the campground host or office person saw the RV when we checked in, we were given sites at the back of the park that would 'give us privacy'. One lady, Kathy, from a KOA camp broke that rule and paid for our nights stay! The general reaction to us and the RV was totally different to what we had thought it would be and very early on during the trip, we had to try to adjust our expectations of what we would achieve, especially as far as collecting donations went.

There were many that gave us encouragement simply by coming up to us, emailing; or showing their support in a smile and a hug; those that honked their horns at us, waved, turned their heads and gave the thumbs up sign; and those that opened their homes to us - all of you really made the difference, a really big difference and I thank you deeply. It was fun watching as people stood with gaping mouths as we breezed on through many little towns and big cities. It was good seeing people point in surprise as we went by, or even purposefully ignore us - they won't forget what they saw and in this way we touched them.P> Although we did not come anywhere close to even the low end of what we expected to raise on this journey, each and every donation was done with a tremendous amount of love and caring, and received with humble thanks. From the checks to the pennies left on the steps of Skilpad, each donation takes us one step closer to that day when a true cure will be found for cml and hopefully many other cancers too. I will remember the young girl who emptied out her penny-purse in the jar when we stopped along the road in Alaska, the man from the yard sale who had made nothing that day, but gave us $5 towards a cure, the other who's wife was in the camper next door hurting in the final stages of cancer, having a really tough financial time but insisting on giving; the guy who popped into the RV with a few coins between his fingers to add to the jar, the checks and cash and that pledge that was made. All of these and more were given with the same hopes and caring as we have - to find an end to this disease.

The appointment with Dr Druker eased my soul. Even Steven is more comfortable having his fast approaching bone marrow biopsy after meeting with Dr Druker. He listened carefully and with great attention as this wonderful man gave him hope and encouraged him not to make cml his whole life, rather, a carefully watched part of his life - like a well thought out chess game. "Do all you can to keep an eye on the cml," he said, "but live life to the fullest. Do things you would normally have done - and keep an eye on cml." Dr Druker and Carolyn Blasdel, and also Jennifer at the reception desk, really made the light shine on the second half of the trip. We know that Steven has seen the best of doctors regarding his cml and can see that we have the right doctors locally too. This is really comforting.

And I heard my son sing. Thank you, thank you, Dr Druker!

Since Steven's diagnosis we have found so many wonderful people, so much reason for hope in life generally. Meeting Penny on the internet and then in person was such a wonderful experience that those marks, the happy and the sad ones, will always be etched on my soul. Deeply etched. I have learned so much from this incredible lady and will carry her with me always. The website of Pennies For Cancer will carry on for a long time to come and hopefully through this site we will continue to raise funds towards cure and treatment and will realize Penny's dream too. Love ya, lady!

Meeting Debs, also a mother of a child with cml, the one friend that can truly understand what I am going through, was absolutely wonderful - it really felt as if we had a bond that goes beyond the normal things in life and I know that we will get together again in the future and hopefully have a lot more time to spend just chatting. It was really great to be so much 'on the same page' with someone in exactly the same boat. Her daughter, Laura, is a wonderful young lady, filled with sparkle and positive attitude and we could see that she was not going to let cml beat her in any way! Wonderful…..

Gale we met in Texas. She is the lady I refer to as the "Pink Energizer Bunny Lady". She and Bill came to meet us at the RV for the one evening we stopped there and we chatted so easily for hours that were way too short. She had been through pre-gleevec times with cml and listening to her stories made me really grateful for all we have today. Really grateful. I would love to join up with them again in the not too distant future - this was yet another meeting that I felt that there was still so much to share and way too little time.

So after traveling a total of 12 229 miles in the RV, in just under 9 weeks, this part of the journey has ended and I just know another one has already started - although it will definitely not involve rolling wheels for a while. Maybe someday we will do another cross-country, but for now we will relive this one through the photos and memories. Please stay in contact and let me know how you are all doing.

I have so many thank you's and am really afraid to leave out anyone that played a part in this adventure. I certainly will remember everyone that we met along the way, everyone that helped in any way, that read the emails, responded to them, kept in touch, donated, hugged, smiled, waved or encouraged us in the up and down times along the way. To the people that organized news and TV meetings and those that came out and interviewed us - thank you! There were many others that we spent some time with along the way and each of you were a tremendous help in my attempt to deal with this leukemia in Steven. Just to mention a few: Sandy in Fairbanks - you listened, you re-taught me that value and I hope I used it enough on the rest of the journey and will carry on doing so as much as I can; Tom in Cranbrook - you jumped right in with no notice at all and made a real difference!; Gloria - your daily emails kept me chuckling and kept me in touch; Trish - thanks SO much for helping keep me updated on Penny and how she is doing; Debs for the laughs and support - you are tremendous! To all the families of the friends we met along the way - you have made a really positive impact on my life; to all those that shared themselves with us - either in person or via email or phone call; to everyone that was so much more than a name on the sides of Skilpad - thank you! All of you will always play a part in the survival of my eldest child, my son, Steven. A very heartfelt thank you! If you feel that I have left you out of this list, please know that I thank you too! This journey will run through my mind for many years and each one of you made it complete.

I will also remember those that thought we were nuts and those that thought we were too blatant - we touched them too in some way and with a bit of luck and good fortune many people will know that we cared enough to be totally excited and do something really 'out of the box". Not much thought was given to the fundraiser side of things before we left -there simply was not the time. We reacted. We did. We did what we could and we did what we did. We did it with love and hope for Steven, we did it in the belief that we could make a difference to many people. Perhaps the difference we were supposed to make was not what we expected but something totally, well - different. We don't know. Maybe we never will. We do know that we did touch some people and we know that so many people touched us deeply and lastingly. I know that my three children saw that it is important to do something in the face of something as big as cancer if you have the opportunity - or at least give it a really good try!P> Although this adventure was primarily in honor of Steven and Penny, it was simply awesome to have taken you all along with us, to have had the opportunity to share this ride with all of you in the manner we did. We are truly honored to have carried you along with us, shared with you our adventures, sights and feelings. Every one of you. I sincerely hope that you all enjoyed the ride…….it meant so much to me having you all there. Every one of you has made this trip a total adventure, a wonderful ride and have inspired me to keep hoping and sharing.

Walking through those incredible canyons at Zion was a lesson in trust and belief. There are warnings all over about sudden and very real, flash flooding. We looked at the awesome beauty in front of us, keenly headed towards the turn up front excited about the view beyond, all the time heading deeper and deeper into a totally unknown area to us. Trust. Hope. Belief. All these were held tight as we walked an awesome trail. And it struck me - this is life! This is the only way to live life……. heading forward into unknown days on unknown trails, holding tight onto trust, hope and belief in something bigger than ourselves.

There is so much beauty out there on this continent, but the most awesome beauty is in the eyes of those that love and care. We had the most incredible fortune to see so very much of this all the way.

To my three lovely, young-adult children - the U3 you saw at the bottom of each email - you amaze me! Thanks for showing such responsibility at such relatively tender ages. Your phone calls and text messages were wonderful and your missing me made me smile all along the way. You are all incredible. My son, Steven, my daughters, Lisa and Joleen - I salute you and your ability to live your lives to the fullest - go for it! I love you all tremendously.

Frank, my dearest, my driver, my equalizer, my partner and husband. A very deep thanks for the many, many miles; the laughs, the smiles, the support, the gentle days and the encouragement. Thanks for incredible dinners and the joy in sharing and the oh so many detours! Thank you, my love, thank you.

All of you made this possible - you will forever be deep in my heart.

Love and Light to each and every one of you

Especially U3

Annie and Frank

XXXXXXXxxxxxx

With special thanks to:

Billy T & Tom Signwriters

My son: Steven K;

Penny and Michael E;

Gale B; Carien K; Marie H.W; Laura B; Beverley F G; Marge C ; Abby M; Bonnie B;Charlotte B; Ruth MB; Susan Butcher; Terry G; Shelley S; Moe S; Eric S; Judy T; Christine S; Karen B; Patricia R; Thaddeus R; Mary B; Susan K; Marisa B; Judy M; Kathy B; Rachel L; Sara W; Shawn R; Roy and Anjana; Leah P; Anita A; Claudia N; Fiona H; Jackie S; Judy M; Kathy Q; Dalton L; Yogi K; Diane P; Shiela W; Herb W; Jane P; Nicholas Y; Lynne A; Jon G; Lori A; Zavie M; Bob J; Tony D; Mary K; Tracy K; Don E; Sailaja K; Bob W; Kathy N; Amy F; Susan R; Daphny D; Tommy B; Tracy D; Sharon T; Shimon B; Nancy C; Dana S; Jonathan S; Bob D; Marque L; Carol H; Lori H; Mary Lou L; Marcia B; Amy B; Donnie B; Lottie D; Andrew C; David RV; Jack M; Gloria D; Ida JB; Denise F; Shawn R; Annie Shelly W.

www.RoadrunnersUSA.com

www.livingwithcml.blogspot.com

www.PenniesforCancer.com

27 September, 2006

27th September - A Day at the Beach........

This morning was moving day again - but not far at all - maybe an eighth of a mile - right onto the beach! The view filling the windows all blue sky, white sand and blue waters, pretty umbrellas and beach chairs - absolutely glorious! We have the spot that is right on the end of a row of rv's facing the ocean - the one with the uninterrupted view of the beach all the way up the coast to where the lights glimmer and flicker in the now night light. The gentle breeze keeps everything cooler here and the butterflies flutter by in packs of about 5 - but they keep coming and hundreds must have passed us by today. The seagulls cruise on the windcurrents, at times only just missing the awning that is gently flapping, making the sunlight dance around inside the RV too. There are a gazillion little holes all over the beach where tiny crabs shelter during the day, only to come out and party at night time.

After moving up here this morning, we headed down to the water again. The temperature of the air and the water was perfect and it was like coming home, sinking into that clear water again. This time it was low tide and we headed out to a sandbar not too far offshore - I am not fond of swimming in the ocean at all because this is home to things with bigger teeth than I have..... But we got to the sandbar safely where the water was not quite knee deep in most places and defiinately deep enough to float in others. What a different world out there! The sounds from the shore disappeared, the feel was different and we gently bobbed around there for a good long time. The butterflies flittered overhead, the gulls yelled at us - I kept my mouth firmly shut when I looked up at them! There were a good many little fish darting around us but one fair sized one that had a green/blue color to it just kept on circling our ankles, never coming too close and never giving us the opportunity to look at it really well. The sunshine made the water look almost like that glass many people use in their bathrooms, either for the window or the shower door - bending vision and casting doubt on everything you think you see. Many times a fast moving shadow would catch my eye and my heart would fly to my throat only to realise that it was simply that - a reflection of the water, Frank moving or even myself! Well - I really dont like the idea of shadows in the ocean! At one point we thought we saw dolphins. They were a good distance away and I already started backing up towards the shore - my eyes are not good enough at that distance to see what they really were - dolphins, sharks or some other glurby hurtling our way for a quick, easily picked meal. We watched and watched until we figured it out - a snorkler! We laughed, me with relief and Frank with some concern for the state of our eyes! Every now and again we would feel a little pinprick somewhere on our bodies, nothing serious but a small but definate jab but could not see anything at all. Frank got zapped a good few times all at once and then I started feeling them. They were not enough to drive us out of the water, just leaving us a tad puzzeled. Then one landed on Frank's finger - a small jellylike blob, no bigger than the 'oh' key on your keyboard and a bit sticky. At least we now knew what was feasting on us.... and we played some more, with the fish still dancing around our legs, not touching, just checking us out.

I love the space that is between the top of the water and the sand underneath and kept trying to stay down to enjoy the clear water and quiet world under there, but it was almost impossible to stay under. Either the water is incredibly salty or I have way too much bouyancy - now be nice! I am still on vacation and the 'bouyancy issue" will be tackled once we get home again! :-) Anyway, after a good few tries, I asked Frank to hold me down under the water for a little while at a time. I can only imagine what the people on the beach thought each time I came back up spluttering and coughing sea water! After a little while he did not want to do this anymore - I think he was afraid beach patrol would come and nab him for attempted drowning or something........

There were no breakers out there this morning, just the gently rolling ocean, the sunshine and such amazing peace - if life could just always be this quiet, gentle and easy on the soul...... I touched something with my foot and gently picked it up with my toes - a tiny, unbroken sand dollar - boy did I feel really rich at that moment! It still had fuzz on it and I cradled it carefully in my hand for a good hour while we enjoyed the water. There are not many shells out here at all - not many that are whole anyway and finding this was really special. After a good long swim/float we headed back to the RV where Frank made a de-licious lunch, we spoiled ourselves with a twirly-whirly icecream, relaxed for a few hours doing absolutely nothing except watch the breeze play on the ocean, making ten billion glittering diamonds that danced endlessly on the top of the water.

Then we headed back to the water for another float. By this time the tide was coming in and the water was a bit cooler and quite a bit stronger and more determined than earlier on, but in we went looking for that sandbar again. The water was quite a bit deeper now too and neither of us was quite comfortable in going out there again. Strange. So we spent a good while playing closer to the shoreline. The waves, yes - waves by now, pummeled us endlessly and it was more of a workout than a gentle float - but we could both do with a workout so we stayed and enjoyed trying unsuccessfully to dig our feet into the sand and create personal anchors. The shadows under the water were more definate now too and we both felt a bit more jumpy, laughing at each other while watching for that next shadow. I don't think it helped that we were the only people swimming - safety in numbers, and all that.

The fish were back and one started harrassing me - I am serious! He bumped up against my legs continuously in a manner that was just not fitting for a fish! He was not even the length of a ruler so had no business messing with me, but he did....... again and again. I really started feeling picked on and kicked out at him next time he came at me. That flippin fish bit me! Frank laughed and laughed, thinking that I was fooling around, until I stuck my foot out of the water and in his face - swallowing water while I did this! That fish actually bit me. I could not believe it. Not a big bite - more of a scraping of a tiny piece of skin off the side of my toe, but it changed the idea of fun in the water. We were definately in a place where I felt that even a little fish could mess with my brain and, besides, it was starting to get cold. The wind had picked up and the water was no longer easy to see into, which made the shadows more.......... ummm, well, you know! And the dry white sand and the warm RV looked rather comfortable up on the shore. So with one more mean word to that fish we left. Thinking about it now - this whole display must have been hilarious from the shoreline....... It's quite amazing how it can be warm under the water and almost freezing when running up the beach in dripping t-shirts and shorts.

After a good warm shower, another restful hour or two, the sunset arrived again. We watched as people with their chairs streamed past the Skilpads to the waterline and plonked themselves down to watch yet another stunning display. I noticed a good many people assuming 'the stance' to take their photos and had to chuckle. Tonight it was simply awesome again, with clouds littering the sky, turning from white to orange, pink and then fire red, the gulls sailing the air currents and the moon lighting up as the sun dropped below the waterline on the horizon. There is no way to describe the glorious colors, the reflections and the feeling of a sunset on the beach. Everyone is quiet as the end to yet another day arrives and it even felt as if the water was less troubled. There definately is something really special about a sunset on the beach. Right as the sun dissappears, most folks picked up their chairs and head back to their campers. I wanted to tell them to stop as the sunset was not done yet! They missed the clouds changing colors, they missed the deep red in those last rays sent upwards by the now long gone sun, they missed the deep orange and then purple all around the sky and the single mysterious light here and there as an airplane flew by. They missed so much!

Others stayed firmly in their chairs until way after dark put it's blanket over everything. I saw them when I went for a short walk to the waterline much later tonight, looking for those little crabs that come out after dark. There they were (the crabs, of course :-)) - all scuttling like spiders in the shallow waters.............. As soon as I shone the flashlight on them, they quickly scooted away not allowing me to get very close at all. There were so many of them and I wondered if my fish would harrass them too. I have to admit that I really did not want to stand on one of them out there almost alone on the beach - I just knew I would yell and that would start something that I did not want.......

The moon cast its shadow over the water in a thick, glistening, silvery road from way back on the horizon to right at my feet and I stood there for a long time, quietly thinking of all the people we have met along this road and all the people we carry with us.

I am sitting here in the RV with the door open, the sounds of the incoming waves pounding the shoreline continuously, the lights of Fort Walton Beach glistening in the distance and Frank gently snoring in the room. There is almost total dark outside and a really wonderful stillness covers everything and we could be alone for the total quiet from all the other campers. We are definately tremendously fortunate.

Love and light and a glorious sunset for you all

Especially U3

Annie and Frank

XXXXXXxxx

www.RoadrunnersUSA.com www.livingwithcml.blogspot.com www.PenniesforCancer.com

26 September, 2006

26th September - Blue, Blue Beach!

We tootled on past Grand Bay where it started raining in a serious way. One minute we still had a goodly amount of blue skies and the next it was all blanketed in sheeting rain, washing most of the the bugs from the windshield and getting our windows closed in a heartbeat! Not so long ago I was leaning forward in my seat up in the front of Skilpad, straining to get the camera to take in the full picture of mountains in front of us - today I was doing the same, but trying to capture the billowing, fast-building clouds. Each time I blinked, another picture appeared in the cloud, another shadow or tip of light - it really was beautiful. And then the rain scrubbed it all out.

We drove past bayou's and rivers who's names we could not begin to pronounce, let alone spell, past little unfortunate armadillo's lying feet up in the road and over dead, dark, still water that looked so dense and ominous that I was glad we did not have to wade through that lot - some were scattered with brilliant green algae that just looked as if it would perfectly hide that ginormous alligator! The swamps were littered with stumps of dead trees and created a beautiful scenery of a very different type inbetween all the full green trees around it. The traffic over one long bridge was really slow and I had a good amount of time for some really nice shots. And on we trundled into Mobile, Alabama where we went in a tunnel that goes under a river, but cannot find the name of it right now - over the Battlefield Parkway bridge where we could see the big battleship parked way to the side in the bay. I have always loved that bridge - it seems to go on and on over that water, is so smooth and easy to drive. Just nice. And then we came into the Gulf Shores and sunshine again. The big billowing clouds were decorating the sky again and seemed less threatening this time. We heard on the radio that some of the storms we had been running just ahead of, had created some havoc behind us and we were really glad to be ahead of most of these storms.

It was really great to have all the windows open, feet on the dash with a beautiful breeze floating through the house. At times the noise of the traffic became a bit much and we reverted to the airconditioner, but it was a good drive into Florida. More people were waving and honking at the rv and it is quite amazing how different people bring different reactions to me. One lady gave me goosebumps the way she waved and turned and waved again..... I knew we were driving past some people I would have loved to meet but had no way of contacting them and also needed to get to the beach again. We dropped south off the interstate west of Panama City and saw a billboard of a campground in Destin that looked really lovely. And so we are here.

The water is incredibly clear with little fish swimming in clusters, the bigger fish just a tad deeper than these little ones as if protecting them, but Frank says they are waiting to eat them! That is like Laura and the 'strangle tree' in Oregon. Right before the waves broke, I could see clear through them and watched as the sea sand was sucked up into the wave before it crashed down, crushing any chance of finding any whole shells..... It is truely lovely here - the sky and the water have a kind of crystal look to them and just looking that far over to the horizon is such a wonderful feeling - free and open and breathable! The waves crashed unendingly on the shore, almost becoming too loud at times and the fine white sand sifted over our feet as it sang as we walked on it. We saw dolphins playing way out and they jumped a good few times while gently moving on their way. There was almost always a butterfly flittering over the shallow water - not close at all, but determindly heading one way or the other......

Early the next day we headed down to the store on the bikes. We found the store but kept riding for a good long way to see what there was to see. It is so sad that so much of the beach is fenced off to the general public. We rode for about an hour without finding any place we could get onto the beach - all entrances were posted as private or for exclusive use by the guests of enormous hotels and resorts all along the road. There is a tremendous amount of construction going on here, all slowly but surely totally blocking the view of the ocean. We passed one open lot that had a for sale sign on it and checked the listed price - one and a half million dollars! For just the land that was not even on the beach and had houses going up in front of it which would totally block the ocean view! We gulped and figured that we could come down here once a month for a week for the rest of our lives and the kids lives and still come out cheaper than buying that lot! So we did our megre shopping and headed back to the RV thinking that we are really fortunate to be able to move around in the way we do, finding new 'back yards' and lots almost every day.

Then we headed to the beach again for another walk Frank went in the water pretty early on, but I just got my shorts wet - at first. I walked in the shallow water while Frank floated like an otter in the rollers with his head up and the tips of his toes also sticking straight up and an enormous grin on his face - it looked so relaxing so I joined him! We floated around there for about an hour acting like kids and having a wonderful time. The waves kept pounding and throwing us up on the beach like flotsam, sandpapering our legs and letting free so many laughs. The purple flag was flying but no sharks came for dinner - the water was warm and clear and it was so beautiful to see the world totally dissappear behind a wave or roller......... just lovely. I have not felt that free in a very long time... we laughed and floated and dug out many broken shells - the best views those of our smiles and freedoms in our eyes. The taste of that sea water was not something I thought I missed, until I got a mouthful again. Funny how that brought back so many memories of endless days at the beach so many years ago. Lovely memories. I also wondered just how much sand each person carries out in their clothing when they have finished swimming..........

Later that night we walked to the beach for the sunset - again with no camera. It was awesome but happened so fast! The clouds were amazing wispy shapes all across the sky that picked up the different shades of the setting sun. The sun itself was the most incredibly bright orange ball, painting the sky all around it in the same color and putting a touch of gold on the ocean. Pelicans flew across this picture making me scream inside for my camera! Simply lovely. People stood dotted all over the beach, quietly in awe of this display......... The setting sun is the end of something, but also the beginning of another set of trusts and beliefs - one being that there will be another tomorrow. So much hope in a sunset.

Today we went for a bicycle ride down the other way to see what there was to see. We should have looked at a map first or at least remembered that this road took us further away from the beach. We passed a dead, possum, racoon and a beautiful colored fox that was also now no more. Its not easy to hold ones breath for as long as it takes to get past the smell and we both stood on those pedals and sped on by as quickly as we could. I wondered where these creatures had left to live. On one side was the six lanes of traffic and the other was a thin band of trees, behind which enormous vacation buildings loomed up tall again. The skies regularly reverbarate with the thunder from the fighter jets screaming overhead - they look like they are having an enormous amount of fun but I am sure they are doing something serious up there.

And then at one cross road with me following reeeeaaally close behind him, Frank came to a screaming stop thinking that a van had not seen us. I did not have the time to get my brakes working and ended up stopping pretty well after crunching into Frank at full speed. I am sure we compacted into an interesting bundle judging by the guy in the van's eyes, but we managed not to fall down. It felt as if we connected in at least ten different places, jarring everything from ankles to chins and something scratched Franks back open and a sad little trickle of blood dripped onto his shorts. But we survived, laughed and kept going. With me a tad further behind him than before....

I managed to load a good few albums of photographs from the trip onto the website - almost caught up! And tomorrow we move to a campsite that is right up on the beach and I plan to spend the whole day in or near the water, filling up the camera again and I really want to see at least one sunrise over the ocean - that will take some doing for Frank to wake me up on time! It really is beautiful and relaxing here...

With thoughts of all of you.

Especially U3

Annie and Frank

XXXxxxxx

www.RoadrunnersUSA.com www.livingwithcml.blogspot.com www.PenniesforCancer.com

24 September, 2006

20th - 23rd Sept New Mexico, Gale & to the Gulf

We left the RV park in New Mexico this morning after I managed to get online for just long enough to download my email. It was very windy and Frank had a battle to keep us between the lines on roads that had no shoulders and especially when the wind gusted. It was not fun watching huge tractor trailors headed our way, waving their way all over the road......... Great patches of plowed land turned into mini dust storms and a goodly cover of dust collected all over everything. Frank does not like dust. At all. I have to laugh when we approach flying dust - I can see the tension build up in him and then we both just laugh - and wipe all the surfaces later! After stopping for a break and a much needed sandwich, we passed a sign board that pointed to a small, winding, dusty road that led to the UFO crash site. I photographed the sign and we tootled right on down into Roswell. The Walmart there has big UFO's on the front of it, the main roads have lights that are in the shape of space aliens - rather cute - and every other shop has some or other UFO connection. Interesting looking town and we had driven through here a few years ago so we scooted right on through, heading east and into Texas.

The hawks playing in the wind welcomed us into the lone star state - they glided so beautifully on the air currents that we both strained our necks to keep watching them float their way across the sky. At times there would be one that would just float in the same place, dipping left and right as if to keep its balance up there. It seems so gentle, so relaxing and so carefree. Until the eagle arrives, I guess! There were a gazillion white and yellow butterflies flittering across the road, all headed for the wheels or the radiator - or so it seemed. Such a pity and later I hand picked about ten beautiful yellow ones off the rv radiator. The purple flowers stretched their way across the countryside, mixed in with more subdued yellow and orange patches. The long grasses on the side of the road whipped their silvery tips in the wind and I tried to capture the full effect on the camera so that I could look at them later and maybe even paint them one day.. if wishes were pennies......

The oil pumps were gently dipping their heads in slow motion, pumping their treasure from underground. Their movement is almost eerie in its slow and constant motion - I would have to paint big bunny pictures on them, or roadrunner heads - something to make it a truely surreal view. Maybe thats why I am not in an oil family - I can just picture the scene of this mad woman running between pumps with cans of paint! We drove through many towns that were obviously dying communities, some of them seemed only to have one or two residents left and so many times we wondered what people do when their little town dies and everyone moves on. It's not like you can even sell your property and start over somewhere.....and must be very scary for that to happen. We could not help but be very thankful after seeing how and where some people live. One of the living towns had a red brick road through the main section and a real, genuine tumbleweed tumbling down the middle of it all - Texas! Many of these places have beautiful wall paintings on a good few of their buildings... they vary from beautiful scenes of the countryside to humongous pictures of people and carraiges and boats and lighthouses..... really lovely. Many buildings were obviously old, not as in falling down old, just beautiful and character-ful old. Some of the signs on these buildings would no doubt bring a fortune on ebay and some of the antique cars slowly rusting in the yards would have definately made some restorers heart sing!

After a long day battling the wind and small roads we found a campground that said it was free! It was difficult to believe but it really was free - there was nowhere to pay at all. This campground is in Brownsfield Texas and was much appreciated! The grounds were level, there were electric and water hookups and a dump station too. Everyone treated the area with respect and there was no trash lying around at all and no one had moved in on a permanent basis either. Really a good stop - thanks Brownsfield! When we left in the morning, one of the other campers stopped us to chat and find out what we were about - what lovely people. After chatting for a good little while they waved us on with good wishes and lovely smiles! A good start to the day.

We took the 380 E which was flat, dusty yet beautiful in a very strange way. There was a patchwork field made up of cows of all colors and sizes - it was truely incredible and really lovely. There were so many cows that we were quite stunned and it really looked quite fascinating with pure white 'tickbirds' dotted inbetween all the cattle. Yes, I got many photos of that too....well, there were miles of cows and the camera had been mostly quiet all day long! All this area is farmlands and we quickly gave up the idea of finding some dead charro (I think!) cactus to take home with us. This cactus has a beautiful wood when dried, but we definately did not want to mess with any of it when still alive and full of those prickles!! And then a beautiful multicolor butterfly flew in my window and sat on my foot for about half an hour before walking its way slowly up the door, waiting for the right wind to pull it out........we just watched each other. Very strange.

There are some really odd road signs along the way - many I have tried to catch on the camera but one that really gets me is a regular along this road - it reads "Hills Obstruct View". No, really? Wow......... In some places there are so many oil pumps going that it looks like some really weird moving metal forest as the pumps line the horizon and everything intween, moving in their slow purposeful way. Somehow I think that being caught out here alone at night could be really uncomfortable. What happens to the spaces where the oil comes out of? Do they refill them or just hope that sinkholes do not appear? That thought held my attention as we scooted down that long, flat road into Benton and to meet a friend there. By this time we had been driving for a good 7 hours, the traffic was a madhouse in Benton and we were both very tired, but looking forward to meeting Gale B, a lady I had met online who also has cml.

After settling into the new campground, Gale and her husband Bill arrived to meet us. What a wonderful couple! This is the lady that ran a marathon in a pink energiser bunny costume that they made, powered by Gleevec bottles on her back and putting her finger on others that were slowing down saying "I energize thee!", spurring them on to finish! What a lady. We chatted non stop for three hours, not getting everything said by a long way, or having enough time at all! It was such an easy evening with many laughs. I listened to some of her stories of pre gleevec times and shuddered to think what would have been for Steven and so many others, had the progress to gleevec and now others not been made! I counted my blessings so many times that evening while I listened to some of their stories. I also listened to how Bill went through everything with her and realised just how absolutely important a caregiver, partner and or friend is. Cancer is not something just experienced by the person that has it and the help, understanding, love and patience of a caregiver is critical. I honestly think that someone who is close like that should write a book of their experiences and thoughts - it would really help other newly diagnosed caregivers to know what can be expected along the way.

A good few photos later, more laughs, sad goodbyes and hopes of future visits, they left and we sank into bed, wishing that the evening could have gone on for a good lot longer. Hopefully soon.........

So we left Benton and headed south with good gentle jazz music playing, airconditioner pumping in good cold air and feeling wonderful after a good nights sleep. We both need the beach, the gentle wind, open spaces and the sand between our toes again.... The airconditioner in the motorhome was already kicking on at 8am and it was hot already, inside and out. We found a road almost directly south, past the Big Thicket National Preserve, Jasper, Beaumont, into Louisana where we spent one night - dropped a few coins in a machine - won nothing and today we scooted across into Mississippi on the interstate. We have not done much interstate driving at all and it was great, making good time and bringing us closer to those long lazy beach walks. We could not see much hurricane damage along this road at all, although there were a goodly number of trees snapped and twisted off in a few areas. In places the road was terrible and the noise inside the rv was stupendous. The cutlery drawer flew open with all its contents screaming at each other; we could hear the stuff in the refridgerator bouncing around and just waiting to jump out when we opened it; the crockery rattled as did the pots and pans and the whole 'house' generally screamed at every seam. We drove right between different storms and heard on the radio how one right behind us had dropped a huge oak tree on someones car - fortunately no injuries, but the sky looked a very ominous gray/black and we were glad to have missed that one.

The cows gathered in big beef puddles under the shade of the few trees that were in their fields and one could almost hear the beef cooking! My favorite road sign arrived on this road - "Beef - Why The Space Aliens Steal Our Cows!" I laughed for a good few miles about that one.......

We are now stopped at some or other park along the way - it has high speed internet and I have been able to catch up on my emails, post more pictures to the site and read some blogs that I have missed keeping up with. We had some really bouncers of storms earlier right after we stopped, thankfully! The RV literally vibrated and bounced with each boom and lit up with the lightening that seemed to be all around us....... interesting, to say the least. There is no space under the bed, so I was brave and just sat it out..

Today while driving along the interstate, a good few people waved at us or gave the thumbs up, but one will always stand out in my mind. The kid could not have been older than about ten years old, but he turned and waved and smiled at us with such purpose, for as long as we could see him. I don't know if its me - but he knew. He knew more than other kids knew. He knew more than he should know at that age with his ball cap covering what looked like a bald head. His smile was wide and excited. I wish I could have hugged him. It's this that really makes this trip worthwhile - this kid knows that there are yet another couple of people that care. He knew.

I have been really honored by Notes and Hopes (projectbenefit.org), a Canadian group that is raising money for cancer. They have put out a cd single with my "The Penny" painting on the cover of their first single and asked whether they could use my painting of "Happy Apples" for their next one! If you have the time - go and see what they are doing - we are all in this together and just seeing that others are doing everything they can is wonderful and empowering. Every step is a step closer.

And for Penny and her family, please spare just a moment and a good wish, a happy thought, a prayer for them all in this very difficult time. Read her blog pensclc.blogspot.com - it's truely awesome and really heartwrenching. She is an incredible lady who is losing the fight with lung cancer. An incredible lady.

Love and Light to each one of you

Especially U3

Annie & Frank

XXXxxxxxxxxxx www.RoadrunnersUSA.com www.livingwithcml.blogspot.com www.PenniesforCancer.com

23 September, 2006

19th September - Moving Along

With the pictures of the canyons still fresh in our minds and our muscles not complaining too much we left Zion on Monday morning. We headed towards the North Rim of the Grand Canyon, gently entertaining the idea of a mule ride into the Canyon. As the miles dissappeared under our tires we became more and more convinced that today and even tomorrow was not the right time to do this! Wednesday and Thursday promised gusty winds and some thunderstorms. The idea of a mule ride down those tiny, teeny winding little paths did not really make my heart sing - especially when I read somewhere that the mules walk on the outer edge of the trail! So I was not madly dissappointed when we "missed the turning" and kept on going through a beautiful and relaxing forest, promising ourselves that we would book ahead of time and do it next time...... aaaah - those next times - they are wonderful!

The scenery all along the roads was simply beautiful - the orange cliffs entertained the camera non stop and it was lovely to see different sculptures in the cliffs - from enormous stranded war ships to bent over older ladies - all changing as the sun moved around. We drove over the Colorado River and stopped to walk back over the foot bridge. The arch on this bridge is 616 feet high and the length of it is 834 feet - quite an amazing bridge. I don't like edges and heights too much(see why I am not sorry about that mule ride??) and gripped the rails with one hand turning the knuckles snow white in seconds! The water reflected the cliffs and was dotted with multiple rafters gentle drifting downstream. Of course I stood and waited till the rafters were right below us and took photos. When I later enlarged them on the computer, it showed that most of the occupants were lying down sleeping as they drifted downstream. Made for some really lovely photos though. And then this enormous Condor swooped past us, gently gliding into the side of the canyon and settling in, determined not to let me catch a pic of it in motion..... Their wingspans are up to 9 feet, tip to tip - simply enormous! It sat stubbornly on the side of that cliff and I am absolutely sure it took off again as soon as I got back into the RV - thats life :-)

We drove on the 160 east till sunset - the sky turned the same orange as the cliffs had been all day and the cliffs seemed to light up even more, creating absolutely stunning scenery. It was just getting dark when we found a wonderful pull off near the little town of Mexican Waters, just wide enough for us to turn around in and we settled in for a good nights sleep. The traffic was something else and as we were close to the road we could feel the wind from each passing car. It was beautifully quiet inbetween tho and the stars were awesome - we had stopped just about an hour earlier to make something to eat and when we found this pull off, we simply stopped and went to sleep! We were both very tired and were fast asleep way before full darkness hit. We did wake up many times during the night with the cars, but had a good long sleep and felt much more human the next day.

Pretty soon in the day we found ourselves near the Four Corners - this is where Utah, Arizona, Colorado and New Mexico meet. There is a monument there where you can stand with your feet in four states at once....... it was very crowded, the parking area littered with RV's and cars of all shapes - yes, we bypassed that photo op too and went happily tootling further up the road towards Mesa Verde to see what it was all about. We were not allowed to take the RV into the park and the bakkie still had its not-starting problem, it was too early for us to find a campground for the day and we simply decided that that too would wait for the proverbial 'next time'. At this point we had both decided that we wanted to definately head towards a beach - it was just a question of which one. We had seen so much beautiful scenery, so much awesome sandstone and rocks and cliffs that to miss out on Mesa Verde did not feel too bad a thing at this point. Now once I get back online and check it out, we will probably be very sorry we did not take the time - but, next time.

The scenery changed yet again as we headed towards Durango and then down into New Mexico. The lands were almost barren with the most awesome natural monuments towering over everything - it was simply amazing. The sunlight caught each one and changed them as we drove by and the ones in the far distance seemed to have an aura of mystery surrounding them - they never got closer and had a misty haze around each one. Definately different and very beautiful.

We found a Walmart at Cortez and did a much needed food shop and bought a new battery for the little Skilpad. It felt rather like towing a dead fish along with us not being able to start the bakkie without the emergency power supply doing the job. What a wondeful sound to hear her crank right up again! She blew a lot of dust out from under the hood when she started and it was as if she came alive again. We hope! We drove over the Continental Divide, again - this time at 7380 feet and north of Albuquerque, New Mexico. The roads were lined with beautiful, delicate purple flowers that created enormous puddles of color on the flat surrounds. The grasses were many different colors too and the tops seemed to be silvery and made a definate lining alonside the road for many many lovely miles. There were also enormous fields of yellow flowers that were so bright that they seemed to light up the air around them.

We passed over the Rio Grande River which was nothing spectacular up here at all and rather caught me by surprise, into the town of Bernalillo and then towards our first interstate in a few days - the 35 south through Albuquerque at rush hour! There we had a good few people waving and honking horns and giving us the thumbs up sign. It's really a good feeling to know that we are making some difference along the way. After getting sweaty palms and even feet while being a really good passenger through that big city rush hour traffic, we stopped at a campground again for the night.

We had a beautiful view out of the front of the RV of the city lights and they twinkled their different colors in the evening light as I sat quietly in the front seat and thought of Penny and her family who are going through such a difficult time right now. With a sad and heavy heart I sent her some gentle thoughts and headed south to the room where Frank was already gently snoring. I remembered when, as a very young child, we would drive around the mountain in South Africa and see the twinkling lights of Cape Town, glistening beautifully far below us on the way home from a late visit to my aunt. Us children were supposed to be asleep or at least lying down on the back seat - but I could never resist those multi-color, sparkly lights. Even then they were special and held a certain type of mystery and a definate beauty in my heart. They still push me to some thought provoking questions........

Love and twinkling lights to you all

Especially U3

Annie & Frank

XXXXXXXXXxxx

18 September, 2006

15th September - Zion By Bus and Bicycle

And into orange land we drove. It was like coming home again and the camera clicked again endlessly.. The different layers of orange and white and beige are glorious and seem to go on forever. We stopped at an RV park near the little town of Virgin right on the Virgin River. Up here the river is not really big at all - just pretty. Early the next morning we jumped in the bakkie to go and explore the Zion National Park. We drove all the way through to the East entrance of the park, stopping as much as we could to take short walks out and hear the silence and capture some of the beauty. The road is a twisty, windy, narrow and absolutely stunning drive through awesome scenery. There was a surprising amount of traffic but it flowed well and we only had a delay at the tunnel where some roadworks were happening, apparently fixing up a recent rock slide. The hills all around looked like they were, once upon a time, a huge cake mixture. Remember when we had to mix a cake from the beginning, sifting the flour, adding the salt and then it made those glorious huge folds that lay, fat, rounded and glorious on top of each other, sometimes with big airbubbles inside pushing the mix into a strange shape? Well the hills were made like that, or so it seems - huge folds of different colors rising up all over the place with determined little trees and shrubs growing in impossible places. Other hills were flat shale, or what looked like it, laying in huge slabs on top of each other, looking as if they were ready to slide right on down at any time. And then there were the "cow pattie hills" - yup, they looked just like that, only a beautiful mix of colors. The many dead trees made for amazing props for countless photos. At one place we stopped to walk, it felt as if no one had ever been there before. The rains had obviously washed some debris along and the multi-colored stones littered what looked like a little river bed. The peace was incredible, the noise of the cars did not reach down into that area and we could not see the road or any form of human input into the scenery at all. There were big cutouts or holes in the hillsides and we sat in there quietly trying to imagine what it must have been like here many many years ago. The gecko's ran everywhere - way too quick for the camera to capture. We both felt really fortunate to be able to feel this peace and quiet where we could breathe deeply and a smile just happens.

After looking at the map and info brochure that we were given at the gates, we noticed that the other part of the park is only accessible to the public via shuttle busses during this time of the year. All the main hiking trails were up that road and the views there promised to be stunning too. So we found the visitors center where we left the bakkie and hopped on the shuttlebus. These busses run up and down this park road, one arriving at each of the 8 stops along the way, every 20 minutes or so. Its free to ride the bus and you can get on and off at as many, or all, of the stops along the way. It was great that both of us could sit and enjoy this ride without having to concentrate on driving. We rode the bus all the way to the last stop which is approximately 8 miles and got off at The Temple of Sinawava. This is an incredible place where you are totally surrounded by towering orange cliffs with the river meandering through it and the most glorious of green trees, cactus and other vegetation. We took the one mile River walk to the entrance of The Narrows - this is a river hike through the canyons that I had seen on tv many years ago and really wanted to do. But not today. So we took pictures of us at the mouth of The Narrows, just so we could say we had been there......All along the path were gorgeous little places where the water was leaking from the sandstone, creating its own little ecosystem with stunning red, orange and white flowers all surrounded in glorious green. The ferns grew all over the place on the rocks giving the place an almost rain forest feel at times. And the river ran along the other side of the path. It was all muddy from the storms the day before and rushed along carrying branches along with it as it pushed itself over the stones and boulders all along the way. Numerous little waterfalls were created by big logs or rocks piled up. This is one of the last rivers out west that has not been dammed up. It really was a beautiful and easy walk up here.

The cliffs were so high up that we could look out of the windows that were on the roof of the bus and only then see the tops at times! Some people were climbing those cliffs and were only about one quarter of the way and we could only just see them. There were mule deer and wild turkeys alongside the road too. Then the bus driver stopped for a snake crossing the road. We were on the wrong side of the bus and could not see it, but apparently it was a King snake. We waited a little while until it had cleared our side of the road and then we all noticed a big tour bus heading our way - it did not stop for the snake, much to the absolute disgust of all that saw it being run over and especially our bus driver! He had tried to stop the other bus by honking and waving, but the guy just kept on going. It was only after this that we saw that the snake was at least 5 foot long. The other driver must have been half blind to have missed seeing that. Sad and everyone was quiet for the rest of the ride. We had noticed that the busses had bike racks on them and the driver had said that the park encourages bike riding on that section of road. Yesssssss!

Early the next morning, we drove back this way, loaded the bikes on the front of the bus and headed back to the Temple of Sinawava where we would start our ride back down. We had packed some snacks, water and jackets and were ready for a wonderful day! It was - it was wonderful. The only traffic on that road were the busses, and the understanding is that they will not pass us while we are moving, so every 15 - 20 minutes or so, when a bus came by, we just stopped again and enjoyed the scenery as they passed. We also made use of the time we had to do some of the shorter hiking trails along the way. The first one we did was to the Weeping Rock. This is only a short hike of about half a mile, round trip, up to this enormous wall of rock that leaks water in the most incredible way, creating a beautiful area of greenery. The water was cold but crystal clear and the wall curved over the top of our heads. It was definately a few degrees cooler under there and absolutely lovely!

We stopped many times along the way, following little paths down to the river or up into a hillside, stopped to snack on our goodies and just enjoy the scenery. Again, it was so beautifully quiet up there. We then decided to go and see the Emerald Pools. This is a longer hike and quite steep, but they looked lovely and we had plenty of time so off we went. The path is a tiny little band of orange sand that wound its way up, sometimes becoming pure rock that we had to scramble up and almost always with a drop off to the one side that churned my innards! The views down onto the Virgin River were stunning and after about two miles we came to the pools. Its strange how some places just feel different. There is a quietness, a stillness and a beauty that affects everyone that comes there. There was no loud talking, everyone sat quietly, resting or eating snacks and just enjoyed. Then one guy spat in the pool! The silence that followed that was definately felt by him and they left rather smartly after that and the general mood was restored again... it was quite funny and there were quiet smiles on many faces after the spitter left.

We took a different trail back that wound itself beautifully through more vistas and water-leaks and pretty flowers and ended up having to walk half a mile back up to the bicycles, but before we did that we found an icecream! The trail took us to Zion Lodge where there were stores to buy all sorts of goodies - we had eyes only for the icecream. It was a rediculously enormous vanilla and chocolate swirled cone icecream that froze our mouths and was absolutely superb! We could have taken the bus back up to the bikes, but the walk looked good and gentle.

And so we tootled further down the road, riding in big circles absolutely enjoying the lack of traffic and the feeling of freedom a gently downhill open road gives one. At one point I was taking a photo while riding and did not notice that Frank had stopped. That was a really close call! We could see many things that could not be seen from inside the moving bus, we stopped a gazillion times and the cameras clicked us all the way down to the Pa'rus bicycle trail. This is a trail of about 1.5 miles that keeps the bicycles off the road for the last section and leads right back to the visitors center while winding itself along the river, in the shadow of towering orange cliffs and over 5 bridges. On the first bridge, I stopped to take yet another photograph and grabbed hold of the iron railing - man, did that thing zap me! The static electricity was incredible. Frank touched it too and I saw the spark jump........ needless to say, the other bridges were crossed untouched by either of us.

As we left the trail, we could not help looking back one last time - the sun was changing the colors of all the cliffs and everything looked beautifully different again. It was an absolootle wonderful day!

I added two more albums with photographs to the website and added photos of Steven with Dr Druker and Carolyn to the "Steven and Beach" album.

Love and Light to you all

Especially U3

Annie & Frank

XXXXXXXXx

www.RoadrunnersUSA.com

www.livingwithcml.blogspot.com

www.PenniesforCancer.com

15 September, 2006

14th September - Into Zion National Park, Utah

We were both very tired after the drive from the coast and through the smoke and fell asleep while it was still light. There was a gently flowing stream right outside the window which kept us both running to the bathroom regularly, but we have found that if we dont put the light on -we dont wake up and the night does not seem as broken apart. We woke up at 9am with a road crew making quite a bit of noise and the sky still very smokey. Time to move. We headed trhrough Redding and on the way to Lassen Volcanic National Park. We have heard that it is lovely there. It's hot, but we are not complaining at all - yet! :-)

The roads were still very narrow all the way with many blind corners with trucks screaming around them some almost skidding around just touching the middle line. It makes for some tense driving and its surprising just how many trucks there are on these narrow roads. Anyway. We headed into Lassen National Park - it was beautiful and lush green in a really lovely forest. Unfortunately there was not electricity or water on the sites and we really needed to charge up all our electronic goodies after a night out on the road - I had forgotten to do this during the past two days and everything was running low. So after taking some lovely photos of the beautiful green moss on the trees, the ice on the volcano, we moves on over Eskimo HIll Summit of 5993 feet, right near Lassen. The forests were really lovely and easy to see inbetween - it looked as if the logging was only done on every second tree - leaving a full forest, a really beautiful one too. We were driving with the windows open, feet on the dash, classical music playing, smelling that glorious smell of the tall slender pine trees and admiring the blue skies...... simply and rottenly spoiled and absolutely wonderful!

We drove through Susanville, California, towards Reno, Nevada. (Will keep KK from Janesville, Calif in my heart) The scenery changed - no trees, barren ground or very small little scrub shrubs and a very low lying lake that reflected the clear hot sky. This scenery went on for miles intermittently dotted with fire burned areas with blackened trees standing like ghosts all over the place. At times the smell of sage was strong and those plants became more as we got closer to the Nevada line. The traffic was insane, everyone seemingly in a hurry and most of them really pushy. We had cars and truckers honking their horns at us and waving, giving the thumbsup as they drove past. At the first honk, we both automatically look behind us to see if the bakkie is still with us and then relax and wave back at them.

There was a tremendous amount of road works going on all along the way both yesterday and today - and at times we followed rows of orange barrels that looked like long snakes for many, many miles before coming across yet more road repair of some kind. And then we found ourselves on "The Loneliest Road in the World" where we passed the loneliest telephone on a pole in the middle of nowhere. This is highway 50 across Nevada. Why did we pick this road to drive? Yes, Wendy - because it was there! The hills were mustard color, barren with small tight scrub and then suddenly everything changes and a lush greeness appears - no trees but a gently grass type of greenery. Blink and its barren again! At times it looked as if we could be on the moon and it was easy to understand why this is called the Loneliest Road!

The sun started setting when we went through this strange little town with the most incredible uphills and tight curves. We decided that that was enough for the day, found a good an level spot at some or other summit and stopped for the night. The problem was simply that this was the top of a hill, a serious hill on both sides of the top. And all trucks going on this road had to stop and do a brake check before heading down the hill - either way! We had many, many trucks stopping all night long. Well at least we stopped being lonely on this road! The wind came up and there was this little weather station with solar panels and a little thingy with three small cup-like things on it that spun around with the wind. This one needed balancing. Badly. It rattled around its centerpoint making sure we knew it was there. The trucks huffed up the hill, screached to a stop, the drivers checked the tires with their hammers - thud, thud, thud - at least 10 times per truck and then headed downhill using their airbrakes. Great entertainment all night long. At first when we stopped there, I was a little uncomfortable at the remoteness of the place - after the 10th truck I realised that no one would mess with us - there was simply too much company! We just had to laugh and actually slept surprisingly well and it was lovely to listen to the coyotes howling all night long.

This morning at around 7.30am - I only discovered that it was this early once it was too late to do anything about it - the wheels were turning already and the camera was in my hand when I looked in horror at the time! Frank snuck that one in on me really quietly - his grin told all....... The scenery did not change much at all and it looked a bit like Death Valley at 6000 feet up! The mountains were laryered with different shades in an enormous circle around us - strange how this did not seem to change no matter how far we drove - the mountains were always all around us. We drove over and through the Toiyabe National Forest and could find no tree higher than 2 foot. The scenery changed between that short, tight scrub and green grass with the ever present bright yellow bush on the side of the roads. Once or twice beautiful fields of yellow appeared and then somehow they were gone again and the scrub was back. Very odd. We went up one mountain to the summit, down the other side, across a valley, up the next mountain range, to the summit and down across a valley again and again and again. It seemed as if we were forever caught in a pattern and just not actually getting anywhere. A few good spooky stories were born along that road......

Then we took the 93 south right after Ely, Nevada. Going through Reno had been very easy, thankfully and Ely did not really feature as a problem at all. Except for the storms we hit around that ears. The lightening zapped down around us and one strike made a really bright red burning spot on a hill really close by. We did not really want to become a hotspot in this way at all and had really no option but to keep on going. I have to admit to closing my eyes and just leaving it all up to Frank. I was quite happy to try to capture the lightening on camera when it was a fair distance away, but when it crowded my space, I just closed my eyes and thought of Florida! It worked and a few minutes later we were cruising between two different storms watching each side light up but no rain on us. It was quite a sight.

In the early afternoon we crossed into Utah - nothing much changed except the quality of the roads - they got worse and the farm equipement traffic picked up. I really hate passing other vehicles on these little roads but had no option other than creeping along. The wind had been blowing badly all day and Frank was tired from wrestling with the wheel for hours and hours. A humongous truck decided to try and pass us on the right in a short turning lane - all Frank saw was the truck disappearing and presumed that it had turned as that was a turn-only lane! Next thing I knew, this big red monster was breathing in my side of the RV! It was a close call and that driver really lit our fuse - mostly we were glad that we had not connected - he was really pushing his speed and that would have been a nasty picture.. Finally we connected with the Interstate 15 South and to Zion National Park. We found a really lovely, clean park - immediately headed off for much needed showers and hairwash - even before checking my email!

Tomorrow promises lovely weather, beautiful views and happily clicking cameras. We will be here for a few days, maybe moving into the campgrounds inside the park for an extra few days - who knows. We are planning at least one good hike through the park and have already loaded the refridgerator with bottles of cold water. Now to get the hiking boots out again.

The past few days have been a mad dash across a good few states and now we are both needing a good few days to slow down again. This is a really good place to do so.

Love and Light to you all

Especially Penny

and U3, of course!

Annie and Frank

XXXXXXXXxxxxx

14 September, 2006

11th & 12th Sept - Mist and Fire.....

The coast road, US101, is a beautiful road that winds its way gently around the coastline. At times we were so high that it took my breath away to look down and of course there were no barriers along the road and some really serious drop-offs which put my stomach muscles into clench mode instantaneously. Near Depoe Bay we saw whales blowing, but the pull-off was full up so I watched them as Frank watched the road....... It was a quiet day for me - I could not find that peace nor that smile that usually comes with the wheels of the RV turning. The views were amazing and many photos of the most awesome rocks in the sea were taken - I just knew Steven would love it! I was not a happy lady at all and finally that night when we were in the campground, I just crawled into bed and howled it all out on Franks shoulder again - I should have done it at the airport then it would have all been out already. I always cry at airports but tried to be a 'big girl' this time - HAH - fat lot of good that did me!

Anyway - we stayed the night in a KOA Campground and when the lady at the register saw the RV, she paid for the night! That was really so sweet. We took that amount and put it into the collection bottle we have and it will go to the LLS too. Thanks Kathy!

The campground was right on the dunes and was gravel with a good few fourwheelers buzzing around. Frank does not like dust, so it was really early the next morning before too many of the fourwheeler campers got up, that we left there. It was a good place for me to catch up on some emails and reading that I had been missing out on as they had free high speed internet.

Tuesday was much better all around. Steven and Laura were home safely and had even managed to find their luggage which had not followed them on the same airplanes. The mist was very thick, at times totally hiding the ocean from view. We drove through Coos Bay which is now big enough to warrant 2 Mc Donalds! One on each each end of town.... We passed by a Minnehaha street - camera missed that one. Some street names are really weird - maybe I will start watching them at home too when we get there.

We stopped for a break in a glorious pull-off with an absolutely stunning view of the ocean and as an added bonus saw more whales too! They were not really close in but it was a really special feeling to stand and watch them breaching and blowing, gently moving along with no time constraints at all. There were a good few other people up there watching too, some with camera lenses I drooled about! The ground we were standing on, this was waaaaay high up from the ocean, was cracked in multiple places - kinda like it had been pulled apart or rattled apart in an earthquake. I must admit to being chicken and standing way back from the edge.

All along the coast were the most amazingly humongous rocks littering the ocean. Some have trees and plants and pretty flowers growing on them, others are barren like volcanic rock. They were all ringed with the white water crashing along their bases and dotted with hundreds of sea birds that also swirled around them. It was with views like this that we entered California on the US101. The road took us around a corner, slightly away from the sea and brought us back in much higher than before. While we were driving, the mist ate the world! I looked out of the window and saw nothing, absolutely nothing except a few ghostly skeletons of trees reaching up through a total white-out.......... for a moment it was very disconcerting. It was as if there was simply nothing there anymore, as if a big flood had come in and everything was gone - very weird. On the road we could see the mist still rolling in thicker and thicker and wondered just how long we could keep driving like this. It really was very eerie with trees and rocks only barely visible at times and then nothing again. After about 10 minutes of this white world, it all cleared in a second and we were eye level to enormous redwood trees! Sometime during the whiteout, the trees had grown up - it was simply stunningly beautiful! After having the lights on for the mist we now had to put the lights on going through this amazing forest of giants. We had driven into the Redwood National Park and were really soaking up the sunshine and warmth that streamed through the wide open windows.....

There was one really enormous stump of a redwood tree with other trees grown up all around it - it was almost as if, once the Big One had been chopped down, the other grew around the stump in protection. So many really big stumps littered the forests everywhere - quite sad. We looked for a campground inside the National Park, but must have missed it so we kept on going, following the Klamath River for a while. We stopped at a beach to stretch our legs and see if we could find some shells or white sand to take back with us. The sand was gray and coarse and beautifully warm! The beach seemed to be lower than the water and I was quite uncomfortable there. The waves were really big and strong and crashed like thunder onto the sand - all seemingly higher than us. We collected some pieces of driftwood - once again there were absolutely no shells at all - and headed back to the RV. I did stop and take some pictures of those waves - they were really menacing and I would have hated to have been caught in that water!

The mist was still swirling inbetween the trees and covered much of the ocean view - the photos of those waves look very eery indeed with the mist putting a veil over it all. We had checked the weather for the coast further south and found that it was going to be or get colder than what was comfortable for beach walking, so right before Eureka, California, we headed inland on the 299 E. The forests were a beautiful mixture of greens, folding in over themselves in different shades on each hill. A good few of the hills had been logged bare but there was so much more that was just beautiful. Our first reasonable summit was reached - Lord Ellis Summit on the 299E - 2263 feet. Skilpad did not even heat up slightly - just puttered her way happily to the top....... now for the downhills! Uuurghhhh.

The road got worse, there were sunken grades, crumbling edges (my side, of course!), no barriers, narrow winding road and then we noticed the smoke as well. These were some of the signs on one short stretch of road: rough road; slides; rock falling; sunken grades; sharp curve; no shoulder; slow trucks; trucks entering; cattle on road; bump; 20mph curve............ there was a time when we wondered why we picked this road! It had been getting increasingly hot but we were not going to complain, still remembering the cold on the beach, we saw rocks littering the road and the smoke really started to black out the sky too.

And then on the side of the Trinity River I spotted some bears! Frank quickly stopped in the well placed pull-off and I jumped out with my camera - straight into a bed of spikey thorny weeds! That will teach me to get my shoes first..... There were four bears, two adults and two cubs. The biggest adult bear left pretty soon, but them mama and cubs stayed while we took a good few photographs. The one cub was brown and the other black and one of the other gentlemen that stopped said that they were grizzlies. Mama Bear allowed us a good few more photos while she stood staring at us and then they all left. What a wonderful opportunity that was! We saw a few helicopters flying with their loads of water and hoped that someone would give us fair warning if the road was closed. The Summit of Oregon Mountain Pass was 2888ft. Still no groaning from Skilpad - just a smooth beautiful ride! The sky was a lovely pink/orange color, the cars still coming from the other side and at the road works sections, no one turned us back, so we relaxed about the fire and concentrated on the road and the views. All the campgrounds around there had been closed because of the fire or were filled up with fire fighters tents and equipment. There were still many firetrucks heading towards us and we saw a helicopter filling its bucket up as we passed one section of the river - much happening in the area and not the right place for us to stop alongside the road - not knowing what direction the fire was headed in. There was also no way we would find our way totally out of the area before dark and so when we came across a beautifully level safety rest stop - that was it for the night. It was well off the road, easy in and out and empty too. A good stop after a long day. The sky was still a beautiful color and the mountains looked incredible with the different light playing over them. I managed to grab a couple of really good photos of the sky color reflected in the Trinity River as well as some of the hazy sunset through the already burned skeleton trees...... That really is such a beautiful drive, especially without the smoke.

So, after starting the morning in mist, we ended it in smoke and a gentle sunset with helicopters dotting the sky and fire engines screaming up the hills. Quite a day. It was good to stop.

Love and Light to you all

Especially U3

Annie & Frank

XXXXXXXXxxxxxxx www.RoadrunnersUSA.com

www.livingwithcml.blogspot.com

http://www.penniesforcancer.com/

9 - 10th September - The Beach with Steven & Laura...

Early on Friday morning, we headed out of Portland, away from airplanes and doctors for a whole two glorious days. On the way to the coast we stopped at the largest Sitka Spruce tree in the USA - quite a sight that was! There were a few interesting trees there, but what was more interesting was the fact that both Steven and Laura were interested, actually pointing out some we had not seen and enjoying the ones we had. There was one tree that both Frank and I thought was sweet - one was hanging onto the other with long 'fingers', not wanting it to leave. Laura immediately said that the one tree was strangling the other and demonstrated by gripping Steven by the neck! Totally ruined the mood, she did :-) It was a good and happy stop.

After the trees, I gave up my front seat to the "kids" as we were heading right onto the coastline and wanted them to get the best views possible. It was great to see how they both stretched forward to see the ocean and the enormous rocks. Frank stopped at a good many viewpoints and the camera's clicked making many good memories. I could hear Steven breathing in that ocean smell and he stood for long minutes staring over the distant horizon, quietly saying "the ocean" a good few times over and over - while I sneakily snapped photos! It was only a two hour drive to the new campground and we quickly set up and trundled up and over the dune to the beach. Here again, Steven came to a screaming stop at the top of the dune just drinking in the scene. It was lovely to watch. We went for a loooooooooong walk, not bothering to take snacks or water with us - we all just wanted to get out there in the fresh sea air and walk, run and be free.

The water was fantastic and cold, the breakers crashed in unendingly chasing us further up into the dry sand. The smell was glorious - salty and that seaweed smell........... Frank does not particularly like it, but I can walk with a piece of seaweed in my hand and enjoy every step of the smell! The sand squeaked under our feet and we discovered muscles that had rested for waaaay too long! After a while we all walked on the hard part of the beach - much easier.... It was seriously great to sink my feet into that sand and just listen to the waves. I can breathe at the beach, really breathe......

I watched Steven as he ran up the dunes, sand flying and laughing loudly, I watched has he and Laura walked holding on to each other at times and chatting as they kicked at the driftwood and dodged the horse p**p and the icy cold waves. Frank found a live crab and got himself thoroughly soaked in the freezing sea water getting it out for us all to see. Steven offered it a piece of driftwood which it then pinched firmly in its claws like holding a cigarette - not wanting to give it up again. I have not seen Steven with as much energy as he had in a very long time - he took off running at the drop of a hat - climbing dunes and then running like a mad thing, jumping and laughing his way down again. He kept heading for the high points and the views and I have many photos of him either on top of a dune or screaming downhill, sand flying, arms and legs all over the place with a beautiful smile wrapped around his face. We were all pretty tired after that long walk and had a gentle and quiet evening in the motorhome. Steven quietly started singing to Laura which nearly made me cry - he was never the sort of person to have enough confidence to sing so others could hear him. A wonderful moment, and not the only singing one either. I have to say that the songs were not of the "put it on the radio" quality song, but it was so sweet and totally lovely to see him this way. I will always remember that look on his face as he gently sang.

The next day was quite a bit colder. We walked in the opposite direction on the beach this time, Frank and I leaving first as we wanted to give them a bit of time without 'the oldies'. This side of the beach was not as clean as the other, had crowds of people walking everywhere with dogs running wild all over the place - but it was still the beach! We found a dead seal, a sailboat made of logs held together by a gazillion miles of string, not rope, string and plenty half sand dollars. No other shells at all - just half sand dollars. We walked till the cliff met the ocean and then headed back and found Steven and Laura ambling arm in arm up towards us. The timing was great as there was a big log that looked a bit like a dragon sticking up out of the sand and we took pictures with us standing next to the dragon with the mist swirling all around us. The mist was something else - it swirled in from the sea making the beach look like a scene from a scary movie. We could see big clouds of it blowing in, some on sand level and others high above our heads. After the long walk, lunch and a bit of a rest, we drove down south a bit to show them a bit more of the coastline and the huge rocks/boulders in the ocean. We found a delicious Chinese place and stopped in to fill up. Time was starting to come to an end and we could all feel it. I have been having a rough time with all the goodbyes on this trip and this was one I was not looking forward to either. We built a campfire and sat there for a while, I burned the photos to disk so that they could take a copy back with them, we went for showers, packed and went to sleep.

Sunday was an early starter. We had to get Steven and Laura to the airport by 10am and it was just over two hours drive from the campsite. We made it well in time, but their flight was delayed by almost an hour and a half which then put all their other connections out of the picture. We did not wait at the airport to see them go, once they went through security - that was it and there did not seem to be a place to actually watch the airplane take off. Besides, crying at airports in front of your kid is not cool! So we said our goodbyes and I-love-you's and headed back to the camp. I fought tears all the way. Steven called later from San Fransisco to tell me that they now had a wait of almost nine hours to the next available connection! So instead of flying in daylight, they had all the way home in darkness and much later. Such is life. Steven managed to talk to Delta and get new connection flights, they survived the wait, he did some of his college homework while waiting and had some time to sit and do nothing - how often does one get the chance to do that? Sit and have nothing to do - nothing one should do, could do or can do......... those moments are precious.

It was very difficult for some reason for me to see Steven leave. I wanted to keep him there for another week at least. This was the first time I had seen my 'child' like this - well since he was a child in what felt like many years ago - and he was definately so much more relaxed than I had seen him in the last year. Running, laughing, singing and joking so openly and freely. He has a wicked sense of humor and would, at times, drive Laura to distraction which made it very difficult to keep a straight face. I watched him look at the ocean with wonder while he filled his lungs, I heard him call Laura to share a new view or beach find, I watched as they sat huddled together on top of a dune watching the sunset. It was especially wonderful to see him so full of energy - running up and down the dunes, away from the water - always with an extra bounce in his step. It actually moved me to tears - I am so incredibly thankful for Dr Druker and his team that made gleevec possible - that made living for Steven possible! I simply could not imagine life any other way.

I thank God for small miracles and also big ones like this!

Love and Light

Especially U3

Annie & Frank

XXXXXXXXxxxx

www.RoadrunnersUSA.com

www.livingwithcml.blogspot.com

www.PenniesforCancer.com

11 September, 2006

7th September - Dr Druker

It was glorious watching Steven and Laura walking into Portland airport on Wednesday evening! They looked so grown up and casual and happy....... really, really wonderful. We took them home and it was great to listen to their excitement about their flights from Chattanooga and to catch up on everything that had been happening in their lives over the past month since we left home.. It was sooo good to see Steven looking good, they were both tired from the long flight, but he looked good! They had been making bets as to whether I would have my camera ready when they came out - anyone want to make a wild guess if I did or not? :-)

After a good nights sleep on all our parts - gosh I had missed them, and I now missed my girls too........ Anyway, after a good nights sleep, a good hot shower we all headed down the road to the bus stop. We had to walk almost a mile to get there and there was no 'park 'n ride', but that was ok - gave us a good time to chat and joke and look at all the houses along the way. The bus ride was a much more comfortable way of getting to the hospital than the way we had tried. On Tuesday we had made a valient effort to find our way up to OHSU by bakkie - that did not work out and once we missed one turn off, we discovered plenty one way roads that all led in the opposite direction to where we needed to be. Once we found our way back on the interstate, we both agreed that the bus or even a taxi would be a simply brilliant way to get there for the appointment. When we eventually got home, I looked up the routes and bus stops and got the solution - tri-met! This is an amazing network of buses that travel all over Portland, taking one easily from one end of town to the other - no stress. Just great!

So we rode the bus through backroads and byroads of the suburbs of Portland, through the center of downtown and up what is also known as "Pill Hill" to OSHU - Oregon Science and Health University. The hospital is enormous; the veterans hospital and childrens hospital and what looked like a gazillion other buildings and houses littered the hill. When I say hill, I mean Hill. The roads up to the hospital are steep, narrow and green - trees drape themselves all over and its rather pretty. Then you hear the bus driver yell "next stop - OHSU!" and almost everyone on the bus gets off. The bus left and we found ourselves in a puddle of people standing around in the shadow of enormous buildings towering above us. Which one did we need to go to? The map we had of the hospital did not, right at that moment, make sense to any of us. We were all a tad hungry were about an hour early and wanted to know which direction to head of in. Soon we found a place to grab something to eat, drink and use up a good many of the excess minutes...... Steven and Laura had grabbed a few car magazines at one of the stands - they were all free for people to look at while waiting - and we sat, enjoying some quiet time before the appointment. We had asked a few people how to find Dr Druker's office, had walked there just to make sure and enjoyed the quiet time now.

Jennifer H greeted us at Dr Druker's office with an enormous smile and beautifully friendly attitude which made us all so comfortable and even more relaxed. What a difference an open smile and good greeting makes. Thanks Jennifer - that really counted for so much! Carolyn Blasdel came in to talk to Steven first, asking about side effects and get some history and details about his CML - she was really amazingly easy to talk to and I saw Steven really relaxing quite a bit as she put him in her headlights and connected. Then Dr Druker came in and explained CML to Steven, explained what he felt about Steven's reactions to the gleevec, gave his recommendations. He really has a way of making this all totally understandable and we all felt as if we now had a much better idea of what sort of response was a good one..... Steven fell right into that category - a good response to gleevec! We had known this before, of course, but it was so good hearing it from the best! The whole meeting was a good confirmation of what we had thought before. Steven was diagnosed in the early part of CML which gave him a really good shot at getting to full remission - not cure - within the desired time. His response to gleevec has been right in the expected and desired area. Dr Druker did not recommend a bone marrow transplant at all - especially as his response was so good. He did say that he was really keen to see the results of Steven's next bone marrow asperation, which is scheduled for 11 October. This will tell us what the cells in the bone marrow itself are doing. It will give us a really good picture of whether the leukemia is simply being controlled or whether the leukemia cells are getting less. Before this meeting, we had been under the impression that maybe we could simply have him do a PCR test and leave the marrow biopsy for later. Now we fullly understood the need to do this 6 month check on the marrow. Obviously Steven is not keen on getting stuck in the back again - I don't think any sane person would be, but at the same time we are all keen to know what is really happening with the leukemia.

Dr Druker did stress that it is important to get the full information of how close a match Lisa is to him and also to get others in the family tested, just in case a bone marrow transplant is needed later on. Laying the groundwork. Its going to be a trick to track down some family for testing but it really is worth the try. In the meantime, an ongoing world wide search is being conducted, looking for a match in case none of the family matches. It would be a really good idea to have all these building blocks in place if ever they are needed. Dr Druker did say that he is not recommending transplant as a first line course of action with CML anymore as gleevec is really doing wonders, Sprycel is already out and yet another drug is due to be released soon too. He did say that they are working towards a cure, could obviously not promise one, but would certainly be trying their very best to get there.

He said that Steven should carry on with his life, that there was nothing that could be pinpointed that could be blamed for CML or anything that could be done that would help 'make it go away'. His advice was to live life the best he could, live life to the fullest he could but obviously keep an eye on the CML closely, not to miss his meds and keep going for regular testing.

We did not have any blood tests done as Steven is scheduled to have all that within the next week anyway and its better to have all that done at the same lab. We all came out of that meeting with Dr Druker and Carolyn feeling really good. Steven has really good doctors at home and in Nashville, but it was really special to get confirmation of everything from this team, absolutely no disrespect to Steven's local doctor and specialist at all!

It was really fantastic to have Laura, Steven's girlfriend, along for the appointment. She is the one who has and will notice the little things changing and her input was really important. She noticed that before gleevec, Steven was often hot, now he was almost constantly cold; she noticed that his energy level had improved dramatically and other signs too. It was good that she could hear the positive message that both Carolyn and Dr Druker gave. It was really important that she shared this appointment, besides, it was a pleasure having her here with us too!

So, although we did not manage to work it out with Corporate Angel Network for flights across here and they had to take 6 different airplanes to get here and back, they had a blast! they loved the flights with window seats all the way here and were still enjoying each other's company by the time they arrived. The appointment went great and this put us all at rest and able to head to the beach with lighter hearts and sand-yearning feet. We had two days on the beach together.

Love and Light

Especially to U2 that are not here!

Annie and Frank

XXXXXXxxxxxxx

www.RoadrunnersUSA.com

www.livingwithcml.blogspot.com

www.PenniesforCancer.com