Wednesday, July 26, 2006
I have a seriously slow connection and it wont let me get into this site easily. The direct links to these sites are on the left of this page or click on the links above.
Love and Light
Monday, July 24, 2006
We had Steven and Laura in here today, showing them how to handle the bills and alarms system and the many other little things that need to be taken care of while we are gone. Steven is looking really well and is looking forward to starting college in late August. He graduated 4 years ago and has now seen the need for a degree so is going to Chattanooga State College to study CAD - Computer Aided Drawing/Drafting. It's a two year course which he will have to do in evening classes as he works full day and cannot afford not to, but he is going to give it a really good try. He has always worked for everything he has and realises that he will give himself an even better chance at a good life if he has a degree. We are hoping that some of the tiredness from gleevec leaves and that he will do ok with the extra load. What a 'kid' this is! My youngest daughter is a newly graduated and stunningly beautiful US Marine and is leaving for North Carolina on Monday evening for the next step of training. My middle child is getting married in late October and being on this trip will stop us from being involved in much of the planning, but she also has a goodly amount of sense and will do just wonderfully. I am proud of all three my children and prone to share.... :-)
Here are some words that I will be using during the trip and in the updates. .
Bakkie. This is the pickup truck, the Chevy S10. Also known as "little Skilpad"
Skilpad. This is an Afrikaans word for a tortoise. Afrikaans is a language of South Africa where I was born and raised. The motorhome is our "tortoise" as we take our house where we go. Our first Skilpad burned this past Christmas Day when we were on our way to Florida. This one is named Skilpad 2, or SP2.
Biltong. This is beef jerky that we make.
U3. This is when I refer to my three 'kids'.
If there are any other words I use that you don't understand email me and I will explain. So many are just second nature to use and I don't realize that they dont make sense to anyone around me. Frank gets this puzzeled look on his face every now and again and I have to stop and explain myself before going on. He is getting used to it now after 4 years, but I do tend to pop in a new one every now and again.
Skilpad looks stunning. The wrap is awesome and I cannot thank Billy T & Tom for doing such an awesome job. I have written almost 100 names on the sides so far. Each time I write a name, I sent a thought/prayer/positive vibe to the person and their family. The caregivers are not forgotten at all! The names add such a wonderful personal touch to this adventure and we are proud to take everyone along with us. If there are any others that have CML or any blood cancer and want their name on there - please email me and we will add you! We will be adding names all along the way.
It is really so wonderful to be able to make a journey like this. Not only that we are going back to Alaska and can spend this amount of time away from home, but that we can do something that we feel will really make a difference. I really feel as if we might be able to help in the fight against CML and hopefully other cancers too by doing this fundraiser. It takes away so many of the helpless feelings, makes my 'freaking level' go down a tad and is simply an honor to take so many people with us! We are indeed very fortunate.
We will be leaving Soddy Daisy, Tennessee, on the morning of Tuesday 25th July. We hope to travel a total of 15 000 miles or more, be on the road for two months at least and raise as much money as we can for The Leukemia & Lymphoma Society. Pledges per mile would be wonderful - we will be taking the odometer reading of Skilpad and the bakkie before we leave.
Almost ready to go.........
Love to all
Annie and Frank
Friday, July 21, 2006
So I asked my questions and said that I was quite happy to leave the two of them alone to continue the appointment. Dr J turned to Steven with a quirky little smile on his face and asked him if he was totally happy with me there. Steven said yes and the look in the doctors eyes became pure, unadulterated mischief! He started firing very personal questions at Steven, not waiting for an answer while Steven frantically waved me out of the room! It was hilarious to see both their faces. Dr J was joking but it took Steven a while to recover.......... It was truely hilarious! Methinks I will leave the appointments up to Steven unless I have a very specific reason to go along. It was a lovely light moment - for me, anyway :-)
The blood results came back beautiful! I never thought numbers were beautiful - but these were. This doctor also says that he prefers not to do bone marrow biopsies which pleased Steven no end.
So. We can leave with the knowledge that Steven is still on the right track and that he is really easy and comfortable with Dr J. A great relief on both counts.
And on the fundraiser side of things: The RV now has over 100 names on its sides and is simply wonderful - we cannot get over it! Someone took one look, gasped and said "Oh My! Can you get it OFF?" We all laughed.
We went to the kickoff party downtown Chattanooga, taking the rv with us. Stacia from the LLS was very pleasantly surprised at what it looked like and a few more people from there gave us their names to ride with us.
The wheels have not yet turned and its already amazing. The emails are rolling in and I am learning so much from everyone that tells me their story. Some are heartbreaking and others so courageous - they are all filled with hope, encouragement and caring. I find myself a mere millimeter away from tears when writing the names on the rv and say a silent prayer for each one that goes on there. For each name there is at the very least, one caregiver - these people are also in my heart, mind and prayer.....they are fighting equally hard against this disease.
The shop is going nuts now that we are closing it down till we get back. Everyone has realised that they had better bring their sick computers now - and they sure are doing it! This is wonderful as we are able to get rid of most of our stock and are ensuring that there will be enough gas money to get us back home!
Three days and we leave. Our aim is to leave on Tuesday 25th between 9 and 10am. I sincerely hope it is not raining! I am not fond of starting a trip in the rain. We also need to start packing sometime soon, we keep delaying this. The piles in the house are growing but somehow the stuff is not finding its way outside. We knew where everything belonged in the other rv - the one that burned on Christmas Day...... and its going to be interesting to pack this one up.
Three days! wow. The excitement is building.
Tuesday, July 18, 2006
And we went to the college to sign him up for classes this fall. He is looking good and just has the general tiredness to deal with, but this has not stopped him from signing up for night classes. He has to work, of course, and will do these night classes for two years. Hats off to him!
And because his bloods are all looking good we can go on this fundraiser with easier hearts...... It would have almost been impossible if he was not headed in the right direction with this disease.
And the motorhome is wrapped! It looks absolutely AWESOME! We will be picking it up in about 2 hours and heading downtown for the kickoff party with the Leukemia & Lymphoma Society this evening. I promise to post pictures as soon as we get them - we were out until 10.30pm last night watching Tom from Billy T's Signs putting the wrap on, but then we left him to do what he was doing so very well and headed home for some sleep. Now the fine-tuning is happening and we will get her back in full regalia in a few hours! I simply cannot wait. I find myself almost tearful typing this. It's working. It's all working out. I SO hope that we can make a difference. This is such a personal drive. Every penny we raise will bring my son closer to a cure - and so many others too. It just HAS to make a difference.
This is becoming a reality and its scary. The tv people are calling wanting to know when we are leaving and we are wondering if we could sneak away quietly in the middle of the night. Just kidding! Neither Frank nor I are big on being in the limelight, but we know there are a good few bridges along the Alcan Highway that we can hide under for a day or so when we need a break.....and a very kind gentleman has offered us his driveway in Alaska if we need to 'hide" for a while up there. I don't think we will want to do too much of that as it would defeat the object, besides we are going to be towing the bakkie (pickup) and can always use this to get away from the "Big Colorful Bus", as one lady aptly named it :-)
A good few people have said that what we are doing is wonderful. I hear what they are saying, but doing this has been my medication for this disease in Steven. This has been my way of coping, of being able to stay sane and help towards a goal - cure! I know I have said before how helpless I felt in the face of this cancer and I really dont know how I could or would have coped if we did not have this fundraiser to focus on. At times the idea of my child having cancer still grabs me by the throat and rattles me around. I know it does to Steven too occasionally. I really really hope that it gets easier on him and Laura too.
It is quite a job packing up the shop and the house and suddenly everyone wants their computers fixed. We will close the computer shop on Saturday this week and pack and clean and sort over the weekend. We hope to leave on Tuesday 25th fairly early in the morning.
And Frank has gone to pick up Skilpad2! This is her official name. Skilpad means tortoise and the two is, well, because she is our 2nd one! I had to stay at the shop as the bench is full - well, someone had to do it and she is his baby so he gets the first drive.......
Gonna go now - more later!
Saturday, July 08, 2006
The good news? Steven is still doing really great! He has color and plenty smiles and looks better and better. The light tan from a sunburn helped too. :-) And now he has seen how easily he burns with gleevec and will be extra careful next time! They are really looking forward to the flight to Oregon and to get to meet with Dr Druker.
We are really so fortunate. So deeply fortunate................
There are a good many D-Days before we leave.
- First we drop off the motorhome with the signwriters on the 12th - next week! - so that the wrapping can happen.
- Early the next morning we leave to get my youngest daughter from Parris Island where she is graduating from Marines Boot Camp.
- Then we have a doctors appointment for Steven early the following week.
- On the 24th Joleen is scheduled to leave for another step on the Marines road and then.....................
- We will start our adventure either on the eve of the 25th or morning of the 26th July.
We are slowly packing up the house, the business and organising everything that goes along with closing up for over two months. Steven's flight plans to Oregon and Dr Druker will be finalised in mid August so we don't even have a definate date for his travel plans yet.
As soon as we are out on the road, I will be sending updates about where we are, what we are doing and hopefully some photographs too via email. The main site for the Alaska Fundraiser is www.RoadrunnersUSA.com and you will be able to link to the updates from there or go to www.roadrunnersusa.blogspot.com.
I do remember the days of pure terror at the beginning of Steven's diagnosis. It feels like at least three lifetimes away, yet is so clear as well. It is amazing to me how much we have settled into the new normal without even fully noticing its arrival. It is difficult sometimes to know whether to even bring up the subject of the leukemia with Steven or just leave it be, mostly we leave it be. I have to talk to him about it all again before we leave - you know- mother stuff, enough to make up for the months we will be gone - I can just see those eyes already! :-)
Every now and again, when everything is quiet, maybe more so when I am tired or Steven has looked tired or pale after a long day at work, the thought sneaks into my mind again. Steven has cancer. I find myself holding my breath, waiting for the wave of all those feelings to wash over me again. But mostly they don't anymore. And with a gentle 'hmmm', a semi crooked smile I can think and see only the positives. The 'what if's' have faded somewhat into the background and Frank has a really good outlook - don't worry about it until/if it happens. Plenty time to worry then!
I do look at my son more carefully than I used to do at the beginning of the year. My heart does squeeze when he is not 150%, even after a rough week at work - yes, my standards for him have gone up! I am allowed to be at 10%, but he HAS to be at least 120% - at all times! And every day I am eternally grateful for today and hope and pray that all three my "kids" have a very full and lovely life...
This cancer has taught us all so much.....