Deja Vu - Wearing Willie's rings while he's in surgery.

We went back to Stanford this week.  We got a call on Monday where a woman informed me that we would need to be at the surgery center by 6:30 AM on Tuesday morning!  I thought that was a bit ridiculous since we emphasized time and again with the surgeon that we live 3 hours away and would need a reasonable hour for Will's cyst removal.  She insisted it was the only time they had available and reminded me that we should feel so lucky that he worked us into his schedule. 
We didn't want to get a hotel so we left Willows at 3:30AM on Tuesday morning and headed to Stanford.  We reached the bay area around 5:30AM and I was shocked to be stuck in traffic.  We were thinking that the one good piece of leaving in the middle of the night would be the lack of traffic, but I'm starting to think there is never a time where there is no traffic in the bay area. We arrived late for our 6:30 check in, but no one seemed to care.
He was taken back to prep for surgery around 7AM.  The didn't get him in to surgery until after 8:30AM.  The surgeon called me just after 9AM.
"Is this Missy?" he shouted through the phone at me.  He was breathless, like he had just ran up a flight of stairs.  It alarmed me since I hadn't expected him to call me and I assumed something had gone terribly wrong.
"Yes it is." I confirmed with a tremble in my voice.
"This is Dr. Spain," he continued, quickly "I just got out of surgery on Willie and everything went perfectly.  I did a really good job."
I breathed a sigh of relief and smiled at this man's self confidence.
"The cyst came out real easy and I steri stripped it together. I don't want you to waste my time by coming back for me to check it, so go ahead and have the nurses remove the strips in a week."
He is certainly consistent in thinking that he is the best thing on the planet!  Our conversation was short and focused mostly on what a great job he had done as the best surgeon at Stanford.  I find it all to be hilarious.
They wouldn't let me in to see Will for another half an hour.  He was sitting in the chair with a large wad of gauze taped on his head and an orange halo of iodine rubbed on his scalp.  They nurses were rushing around him and giving us instructions as if he had just had a major organ removed.  They don't usually do cyst removals in operating rooms, but because of Will's recent chemo, he had to have it done in a sterile environment.  It was obvious that the nurses were used to far more technical cases and wanted to assist in the smallest of details.
They refused to let him walk to the car so I pulled the car up to the building and a nurse wheeled him out to the car in a wheelchair.  We laughed about how he got a wheelchair ride out to the car after a simple cyst removal, but after receiving the heaviest dose of chemo available they made him walk out on his own! 
We stayed in a hotel that night and returned to the hospital on Wednesday morning.  It was the busiest hospital day ever.  His first appointment was at 10:30 AM for a lab draw and dressing changes on his picc line and head.  The cyst removal site did look good and he didn't experience any pain from it.  We decided that the conceited surgeon really was skilled at his craft.
We finished there at 11:30 and went directly into his second appointment with the cancer doctor, Dr. Medieros.  This is the rico suave doctor who reminds me of Uncle Jesse from "Full House."  He is still as self appreciating as ever, but after dealing with the surgeon, he seemed a bit less extreme.  He told us we would need to arrive Sunday to get labs done before Willie starts chemo on Monday. Willie will receive treatments on Monday, Wednesday and Friday from 7AM to 10 AM and again from 5 PM to 8 PM.  He told us that the effects of this round should be much milder than the previous round since the chemo is a much lower dose.  Willie skated through the last round, so we are expecting the week to go well.  The week after he receives chemo, we will expect his counts to drop again and he will probably need transfusions like before.  The nice part about this round is that we can manage all this from home with frequent check ups at Enloe hospital.  We all agreed it will be much better to be at home.
We talked a bit more about transplant options.  Dr. Medieros has been pushing for a transplant from the first day we met him.  We told him that neither of Will's siblings were a good match and he told us that they have had good success at finding matches on the registry.  The bone marrow donation registry is 9 million people strong and spans the entire world.  He said that we can find a match in another country and they can still get the marrow to us.  That is simply amazing!
We finished with him at 1PM and moved one room over to meet with the transplant team.  We have been anticipating this meeting for a month.  I had visions of my mind of sitting in a conference room in front of a panel of the most prestigious doctors at Stanford.  In my vision we would ask questions of the team and they would guide us in making the best decision.
I was a bit surprised when we were tossed in a regular examination room.  The second surprise came when we were met by one doctor instead of an entire team.  We were interviewed first by a fellow who asked the same series of questions that every new doctor asks: how did he get diagnosed, what were his symptoms, yada yada yada! We gave her the re-cap on everything that has happened in the past two months.  She made a series of notes on the back of a folded up flier then left to get the transplant doctor.
Dr. Luport entered the room and introduced herself.  We have heard her name thrown around in discussions of transplants and it is understood that she is the best in her field.  She is a small woman, not much over 5 foot tall.  She is Asian decent with a thin build and the most perfect dark black bangs that I have ever seen.  Every hair of her head seemed to be perfectly trained into place and she was savvily dressed. 
"So you're the big weight lifter" she said with a smile. "Dr. Medieros talks about you a lot.  He is very impressed with you!"
We smiled at that.  I wasn't aware that Medieros talked about anyone but himself!  This was a compliment indeed.  Willie told her a bit about his power lifting records and she listened with interest.  She is warm and caring and we liked her right away.
"I know you've heard a lot about transplants from your other doctors, so I will tell you about the coming steps," she said "and if you have any other questions we can discuss those."
"We will start searching the bank for a donor in about 2 weeks" she continued "we will have a good idea if there is a match within the first two or three weeks and we'll keep you posted.  In the best case scenario, we will find someone quickly and get going on the transplant in the next few months."
She paused and I wanted to yell at her to slow down.  I had been expecting a long, drawn out conversation with a team of doctors who would answer our ever growing list of questions and explain the transplant process to us before jumping into a scenario of receiving a transplant.
She continued to explain the risks of having a transplant and quoted stats to us on survival rates.  I am starting to tune out every stat I hear.  There are so many stats for everything and all of them are scary.  Willie has managed to defy every statistic thus far so we can only assume that he will continue to do so.  She informed us that he would need to stay in the Stanford area for 100 days following the transplant.  The first 30 days after the transplant will be spent in the hospital.  The 70 days following that we will live locally and report to the hospital daily for lab work. 
They have done further testing on Will's siblings and found that his brother is a half match.  In the event that there is no match found in the donor bank, we can consider using his brother's marrow. Dr. Luport explained to us that half matches are not the best option for transplant because the risk of it failing are much higher.  There is a 40% chance of failure with a half match transplant and a 40% chance of the leukemia coming back without a transplant.
"If we get to this point, then we'll sit down together and have a long conversation about best options." she said "half match situations are tricky because the risk of death is higher, but we also need to remember that the risk of dying for leukemia is also high without a transplant."
It is the ultimate catch 22.
Dr. Luport was optimist and assured us that they have good success in finding matches daily.  We asked about Willie's cousins being possible matches and she said that if his siblings didn't match, the likelihood of a cousin matching are slim. 
"It's funny," she said "but you probably have a better chance of matching with a complete stranger than one of your relatives."
We asked her if Will's cousins could be tested anyway and she told us about the national bone marrow bank.
"Anyone is welcome to register with the bone marrow bank," she explained "they only thing they need to know is that they will not be signing up to donate marrow not only for you, but they will be placed on a world wide registry.  That means even if they don't match you, they may be contacted to give marrow to someone else."
The website to sign up is www.bethematch.org.  I have signed up already and encourage anyone who is eligible to do so also.  After being in this situation I hope that I can one day be the match for someone like us that is waiting in the limbo of finding a cure.  It's amazing how much this journey has taught us to rely on the support and help from friends, family and even strangers.  We are now hoping for the ultimate service of someone who is willing to donate their marrow to Willie. 
We continue to pray for a match and know that we will be guided in the direction that is best for us.
While we wait for the match, Willie will continue to get chemo treatments.  We go back to Stanford tomorrow and will be down there all next week.  I'll be back next week with updates. 
Happy weekend to all!