Monday, September 11, 2006

7th Sept - 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 of the U3, that are not here!
Annie and Frank
XXXXXXxxxxxxx
www.RoadrunnersUSA.com
www.livingwithcml.blogspot.com
www.PenniesforCancer.com

1 comment:

linda g said...

Annie
Thinking about you.Jonathan just went for a 6 month bone marrow yesterday and did get through the test. He writes about it in his blog. It is important. Steven sounds great and I find it comforting to read your writing. Meeting with Dr Druker must have been a help to all of you.
Linda