A Farewell To Lombardi

This week has gone by so fast. We went back to see Dr. Lombardi on Monday. He is the Dr. who diagnosed Will's leukemia and started us on this crazy journey. When we first met him in May he had just arrived from San Diego and was planning to fill in for 3-4 months until they found a permanent Oncologist to replace him. We found out on Monday that they have hired a permanent doctor to replace him so he is on his way back to Southern California. We have only had a handful of interactions with Lombardi, but he is one of our favorite doctors from the countless MDs we have met on this journey.
This time he entered the room looking casual and trendy. In our past encounters he had been so meticulously put together that I questioned whether he had shellac sprayed in his hair. His hair was longer than it was 5 weeks ago when we last saw him and it was combed forward on his forehead instead of his usual combed back style. Dark curls grazed his eyebrows in cool, casual waves that complimented his hipster checkered shirt and striped tie. He was a picture of the local fashion in Chico which is influenced by the hoards of college kids who make up most of the cities' population.
We exchanged hellos and caught up on the progress of Willie's care. Lombardi filled us in on his upcoming departure and said he would be leaving us in the care of a Dr. Talebi. I have come to realize that it is ridiculous to think we will ever have a Dr. with a normal last name!
"Are you excited to go home?" Willie asked Dr. Lombardi
"Oh yeah!" he said, with the most enthusiasm we've seen from him yet "I can't wait to see my kids!"
This was the first thing we have ever heard from any doctor about his personal life. I am constantly wondering about what each doctors home life is like. I can't imagine any of the doctors we have met spend much time at home since they seem to live at the hospital.
We learned the Lombardi has two children and is married to a woman from Italy. His family is currently in Italy where they spend a month each summer reconnecting with their roots. I was instantly jealous as I have visited Italy and fell in love with the country. I should correct myself, I fell in love with the Gelato and my love for the country followed.
There is a Gelato shop on every corner in Italy and every one of them serves the most delicious ice-cream like treat that was ever created. It is nothing like the Gelato you can get in the states, though I can't put my finger on the reason why. Italian Gelato is so smooth and creamy it's like eating a frozen cloud. On our Italian adventure, I took it upon myself to taste Gelato from every shop we passed. It was a lofty goal, but I was up to it.
The most memorable shop we visited was in a small village on the southern end of Italy. We were working our way toward Sicily which is an Island at the end of the country. My brother had left for business so my best friend and I set off on a "power to the women" trip. We booked a hostel in a dusty town and got of the train to discover ourselves stranded in an Italian ghetto. There were bars on all the windows and shady looking people in the streets.
We arrived at the address of the hostel to find a locked gate in front of a dark alley. I remember looking down the dark alley and thinking that it was the place we were going to die. Nothing about the scene was welcoming or safe. We buzzed the bell and an employee came and let us in. He opened the gate that had to be at least a century old and led us down a dark, dank alley. We were both wearing backpacking packs that were heavily loaded and would not have been quick to get away if the need arose. The alley ended and we were guided into a lovely courtyard filled with iconic Italian metal chairs and tables. The hostel turned out to be a nice place, but we were warned about trusting anyone in town. And above anything else, we were warned that we must never be out after dark!
We settled in the room and decided to go out for a walk and get some dinner before dark. It was growing late and the unruly crowd was waking for their nightly prowl. We walked far longer than was comfortable in search of a restaurant with no luck. As the light was fading I grew anxious, but just as we were about to give up we found a tiny gelato shop on the corner. It wasn't the cleanest establishment that ever was, but the gelato was beautiful as it stood proudly behind the glass case. Each flavor had a tiny plastic figurine stuck in it to define what flavor it was; the banana had a tiny banana, the pineapple had a miniature prickly fruit proclaiming it's flavor. My eye was drawn to the bright blue gelato that had a small figurine of a Blue Smurf stuck in it. The flavor below it read "Puffo."
I had to try it!
"Da me un piccilo cupa de Puffo" I said in my best Italian. I had learned this phrase early in our trip and could order any flavor of Gelato with the simple sentence.
"Puuuuuu-Fo?" he asked, drawing the 'U' sound out to a ridiculous length.
"Yes, Puffo." I said
"Puuuuuu-Fo!" she corrected. This time using his hands to show the drawn out 'U' sound.
"Puuuuuuuuuuu-Fo!" I said, mimicking him.
He smiled and blew a kiss to me from across the counter. I had no idea what he had just exchanged between us and hoped it wasn't anything committal. He scooped me a container of smurf flavored gelato and we were on our way. The flavor was somewhere between blue raspberry and cotton candy. It was a most interesting taste that I can still recall whenever I see a Smurf.

Lombardi wished us well and we gave him a great big thank you for the role he has played in this crazy journey. He left the room and shut the door behind him.
"Looks like he's been Chico-fied" Willie said, in reference to the doctors new trendy hairstyle.
I laughed. I wonder if his new style will fly back in So. Cal!
Will's blood counts were good on Monday so he didn't need any transfusions. On Wednesday his platelets were low, but the infusion center was closing for the day so they sent us away and had us come back Thursday for a platelet infusion which went really well.
Willie has been feeling great and has been keeping up with most of his usual daily activities. His white count had been holding at the beginning of the week, but as of Wednesday it has been trending downward. This means he is now back to being in isolation and wearing a mask to keep him from picking up any infections. It's the last place he wants to be, but we can both agree that being in isolation at home is much better than being quarantined in a hospital room.
Friday morning we met our new doctor. Tony Talebi entered the room like a man on a mission. He is a middle aged man with an athletic build and creamy dark skin that peeped at us from unbuttoned collar. He wore a classy striped shirt with the collar popped up in a casual fashion.
"Tony Talebi" he said, as he extended his hand toward us.
I always find it funny when people introduce themselves with only their name. To me, I assume that one must have an overwhelming amount of self confidence if they think their name can replace all other formalities such as "My name is....." or "Hi I am......"
His handshake was warm and his smile was welcoming and we were put at ease. He had reviewed Will's chart and was up to date on his care. He asked a few questions about what has happened so far then looked at our plans moving forward. It was unusual to meet a new doctor who has actually researched Will's case, so we were pleasantly surprised. He asked some questions about our Stanford doctors and announced his plans to connect with them. It was so refreshing to meet a doctor who will join our Stanford team and not try to do his own thing instead. We are happy to have him as our local connection.
He scheduled Willie to get labs three times a week until his counts start rising. If his hemoglobin drops below 7 he will get red blood cells; for platelets the threshold is 20. This coming week he will most defiantly be getting transfusions at some point, but it's all part of getting back to where he needs to be.
We haven't heard anything from the bone marrow transplant team, but hope to hear something in the coming weeks about whether they have found a match or not. I signed up to be a bone marrow donor at www.bethematch.org. They sent me a kit in the mail that included 4 long Q tips. I rubbed the Q tips on the inside of my cheeks and mailed them back to the donor bank. It was so easy that I was afraid I did it wrong, but apparently that is all it takes.

We will be having a representative from Be The Match at Willie's fundraiser BBQ on August 25th at Jensen park at 1PM. Tickets for the event are $10 and are sold at the Health Habit or Jean's Coed. Tickets will be sold at the event for $15. We are encouraging anyone who is eligible to join the marrow bank. We know that the chances of anyone we know being a marrow match for Willie are slim to none, but there are countless people like us out there who are looking for a match that you may be a hero for. I really hope that I can donate my marrow to someone in need as I know what a precious gift it is.
We will continue to hope that we can receive that precious gift.

Have a wonderful week everyone!

Back Home with C-Diff

Have you ever been driving somewhere when you suddenly realize you have no idea where you are going?  This has happened to me far too many times lately.  A few weeks ago I was driving home from Chico on a road I have driven a hundred times before when I realized I had no idea where I was.  It was a brief moment of panic as I scanned the horizon in search of anything that looked familiar.  Ahead of me where miles and miles of rice fields with no land marks to relieve my anxiety.  I continued driving and after a few minutes I saw something that reminded me of where I was.
This is kind of how life is for us right now. Everything has been turned inside out and some pieces of our new life is unfamiliar territory.  Most days are fine and we continue on as we always have with slight modifications for the cancer that is now a third party in our family. Other days I come to the sudden realization that I have no idea where I fit into this puzzle that is our life.
I imagine the adjustment to life with cancer is something like losing a limb in that you have to find ways to adapt.  I used to have a mortal fear of people who were missing limbs.  This fear started early in my childhood when I saw a man without any legs begging for money near a busy mall.  I was intrigued by his lack of limbs and felt as if I was frozen in place as I stared at him. I remember my Mom grabbing my hand and ushering me along as she explained that he was holding a sign that said he had lost his legs in the war. 
Nothing traumatizing happened in that event, but it is burned in my memory along with a feeling a fear.  I think the fear was more of my own at the thought of losing a limb.  Many years later, my Grandpa got a staff infection in his leg which resulted in it being amputated just below the knee.  I remember the day he had it amputated, I was so sad for him and so afraid of seeing him.  I wasn't sure how I was going to feel.  What if I couldn't look at him?  Would I love him the same?
It's silly now to look back at that moment and wonder how I ever could have been so close minded.  Of course I would still love him!  I simply had never been in a circumstance that tested my capacity like that before.  I quickly learned that there is no health challenge big enough to alter the capacity to love.  That was a good lesson that I have reflected on countless times since.
Grandpa's recovery was slow and filled with challenges, but he was persistent and didn't let the loss of a limb slow him down.  He got a prosthetic leg and continued with his gardening and yard work that he so loved.  He looked his disability in the eye and, like Willie, said "that's all you got?"

There is a picture that was taken of my Grandpa and Aunt after he got his fake leg.  In the picture my Aunt is tickling the toes on his fake leg and Grandpa is laughing.  It is one of my favorite photos of all time and I think of it often when I feel like life has handed me a doozy.  It reminds me that there is no challenge or trial so big that there is no room for moments of joy.
I will forever be grateful to my Grandpa for teaching me that.
I thought of that picture often this week as it was one of Willie's harder weeks.  He received chemo treatments on Monday and Wednesday without incident, but Wednesday night his stomach started to hurt.  We passed it off as chemo and when we has in bed all day Thursday with no energy we blamed the treatments.  When the diarrhea started I got worried.  He had hardly anything to drink all day Thursday then lost alot of fluids through the diarrhea so when we got to the hospital on Friday I requested the nurse give him IV fluids right away.
She moved us to a private room and started the IV fluids then took blood and stool samples to run some tests.  His potassium was 2.6 so they gave him a couple bags of IV potassium.  He got his morning chemo and we went back to the hotel.  The Dr. called just after we got there to report that he has C-Diff which is an ugly infection of the gut that causes intense and frequent diarrhea that comes with risks of dehydration, especially for chemo patients. She got him a prescription for an antibiotic and put us on strict quarantine rules for a week.  C-Diff is terribly contagious so Willie is hanging out here at home where he can keep his bugs to himself.
This coming week is the time when the chemo really starts to take effect.  We see the doctor in Chico twice this week and he will order transfusions when Willie needs them.  I don't know if I'm up to managing his care from home.  At the hospital we knew that his labs were being checked twice a day and transfusions could be given at any moment they were needed.  At home we will only be checking  his labs twice a week which means his counts could be low for days before a blood test catches them.  There is also the threat of the dreaded "chemo fever" that they say every chemo patient gets at some point.  With this fever it's not at "if", but "when" it will happen and the second his temperature spikes we are to take him to the emergency room.
With his last round of chemo he only spiked a temp a few times and they were always short lived.  We're hoping for the same good fortune this time. 
Thank you all for your words of encouragement, love, prayers and support.  We are so blessed to have wonderful friends and family who lift us up when we are down and remind us that there is always joy to be had.
Here's to a good week and a quick goodbye to the dreaded C-Diff!

Round 2 Begins



Willie sleeping while the angels painted on the wall watchover

Well, we're back at Stanford.  We arrived on Sunday afternoon and Willie had labs drawn to check his levels before he started the next round of chemo. His counts look awesome and he is feeling great.  It is strange to consider those two things then realize that he is about to receive more chemo that will drop his counts again and make him feel like crap. 
We are staying at a hotel that our social worker set up for us.  They offer a special rate for Stanford patients and the whole place is crawling with balding people in pajamas with IV lines and filter masks.  We feel right at home.  The decor of the hotel is bizarre.  The lobby is done in an old Victorian style with floral wallpaper, scarlet carpet and fringed lampshades.  There are Barbie Dolls dressed in Victorian era clothing in glass cases along the walls and the entire room smells of Grandma's perfume.  We checked into our room and were met by much of the same decor.  The guy at the front desk told us that an artist from Berkley came through the hotel years ago and painted images in each room and murals along the outside of the building.  I cant judge the art because I am no artist myself, but I can say that it is fascinating, at best.
We woke up bright and early Monday morning and arrived at the cancer center just before 7AM.  Our nurse was nice with a quirky sense of humor that put her on the edge of the crazy line.  She has been working at Stanford for 25 years and administering daily chemo treatments is second nature to her now.  She talked us through the treatment and reminded us of every side effect that may occur.  It is scary to hear them all detailed out in front of you.  It brought up memories of the first time we heard these warnings over a month ago.  At least now we have been through it once and know how Willie reacts to chemo.  She explained that with every round of chemo, the body loses some of its defenses.  We told her how well he had done with is first round and that we are expecting similar results this round.
"Willie may have done well with his first round, but his body is not in the same shape it was before," she said "chemo is offensive to the body and each round opens up a greater risk for infections."
I know she's doing her job, but I felt like we were being lectured.  I think it's good to know all the risks and to move forward with caution and hope.  That has got us this far, so I prefer to remain positive and hope for the best, rather than wait for the worst to happen.
The treatment area is a strange place.  The room is a large square with 6 reclining chairs set up around the perimeter with each chair facing inward.  The chairs are an ugly brown/yellow color and made from fake leather.  They look like they may be comfortable until you sit in them and realize it's not a place you would want to stay for an extended amount of time.  Each chair has a thin curtain surrounding it that can be pulled over to provide the small amount of privacy that a layer of fabric can provide.
None of the privacy curtains were pulled when we arrived and we all sat together in one room, each family stealing glances at the others.  It's impossible not to look around in a room like that.  My eyes wandered from one family to the next as I noted that we all seemed to be in the same circumstance.  Each chair was filled with a patient who was balding and sporting a PICC line bandage similar to Willie's.   Each patient had a caregiver with them that had a look of exhaustion and anxiety in their eyes that I thought I was above, be doubt that I am. 
The demographic in the room was humbling.  Across from us was a young Hispanic guy, next to him, and elderly couple; the next chairs over held and middle aged African American woman then an young Asian girl.  The final chair was filled by a young Japanese guy who looked to be in his early twenties.  He was the only person in the room to arrive alone and remain alone throughout the treatment.  I couldn't help but wonder about his circumstances.  I found my eyes wandering over toward him several times out of concern and curiosity.
Our nurse hooked Will up to the chemo IV and the drip down began.  The chemo is administered over 3 hours and it seemed to take forever in this setting.  Two of the chairs emptied and filled throughout the morning as the people received quick treatments and left, but the 4 of us remained.  After talking with the nurse we learned that Will and the 3 others were receiving identical treatments.  We were all in this together.
As the morning went on, I struck up a conversation with the Hispanic family next to us.  We learned that he had been diagnosed with AML just two days after Willie and had walked an almost identical path.  He had also gone to the Dr. with a fever and a tooth infection when he found out it was AML.
"They had to pull 4 of my teeth!" he said, as if it was the most unbelievable thing in the world.
We laughed as we told him Will had also had 4 teeth pulled. 
He is also looking into a getting a bone marrow transplant but doesn't know if his siblings are a match yet.  We wished him luck and told them that we hope right along with them that one of this siblings will be a match.  It's amazing how cancer transcends every barrier.  It smoothes over all differences and puts everybody on the same playing field. 
The "3 hour treatment" took close to 4 hours and we left just before 11 AM.  We were both in a downer mood.  It's nice talk with people who are going through the same thinhg as us, but it is also depressing.  We have learned that everyone handles cancer differently.  Every person experiences different symptoms and has a different experience from someone else who has the same diagnosis.  There is also a wide spectrum on emotions and attitudes that accompany the diagnosis, most which are not too pleasant.  We prefer to stay in our own bubble of optimistic hope. 
We came back to the hotel and took a nap on our queen size bed.  I mention the size of the bed because it is the topic of conversation in our world right now.  At home we have a California king so downgrading to a queen is leaving Willie feeling squished.  I kind of like the squish.  Our bed at home is so big that we don't even see each other during the night.  Kona, our 80 lb dog, takes advantage of the space and usually ends up snuggled between us.  She has recently discovered pillows and likes to rest her weary head on a pillow after a long day of hard dog work.
The last place we encountered a bed this small was when we worked at the camp in Vermont.  I had a twin bed in the counselors cabin that I was completely happy with.  Willie has always liked his beds to be big enough to sleep 3 of him and he somehow found a queen sized mattress on the campground.  He set it up in a green cabin that was set a way back from the counselors cabin.  There were two rooms in the cabin and he shared the rickety space with the boys hill director.  The entire cabin leaned to one side and the floor boards creaked with every step as if the entire shack was about to collapse.  It had plywood walls and an A frame roof that housed all sorts of flying creatures.  The first time I entered the cabin to bring Willie his lunch I stood at the back door and set the tray on his bed.  I was afraid that if I crossed the threshold, my weight would throw off the balance of the cabin and bring it crashing down.  I also wasn't certain that I wanted to remain in the tight quarters with the brooding Willie Beavers.
That uncertainty wore off and soon he was inviting me to sit on the bed as he ate his lunch.  I remember sitting at the foot of the bed, feeling the scratchy wool of his woven blanket as it rubbed on my legs.  The blanket looked to be 10 years old and featured pictures of deer in the forest.  It was a most fitting image for the rustic cabin. 
On night after I delivered dinner I laid back on the bed and heaved a sigh of relief after a long day of work.  I observed the rafters above the bed and immediately sat up
"Are those spiders?!" I nearly shouted, pointing up at the ceiling.
"Yeah Missy," he said casually as he took another bite of food.
I was alarmed at his lack of concern
"You just let them stay there?!" I asked, but it was more of an accusation than a question.
"They're not hurting anyone," he said "And they help catch the bugs."
I shivered as I felt the creepy crawly legs of a thousand imaginary spiders craw up my back.  The spiders living on his ceiling were not your average spider.  These were HUGE.  They were about the size of a Daddy Long Leg, but they didn't carry the innocence of that spider.  Their legs were thick and black and spanned several inches.  The body was bigger than the long leg variety and their backs had a strange iridescent color to them that made them look purple and green depending on the light.  They had built a maze of webs in the rafters and I could see hundreds of mummified flies caught in their traps. 
I was grossed out.  I looked at Will as if there was something seriously wrong in his head.
"So you're not going to do anything about them?" I asked in disgust.
"Nope." He answered.
"Some mornings I wake up and they are crawling on my face," he said "It feels so weird, they pump up and down with their legs like they are trying to suck the warmth out of me because they're cold."
He put his hand on my arm and pulled his fingers upward "It feels kind of like that."
I shivered.
He laughed.
I had to get out of there immediately.
I left that night and informed him that I would not be coming back until he sprayed for the spiders.  He got a can of spider spray to appease me, but I later learned that he never used it. 
If that wasn't bad enough, a few days later I found out about the bats.  There were a couple that lived in the rafters and came in and out at night.  Willie felt these weren't a problem either, but I was sure I was going to get bit by one and get rabies.
Overtime he has changed my opinion of spiders, but not bats.  I am now happy to let a spider keep a web by our back door to collect the bugs that would enter if it wasn't there.  I even let a few webs stay by the light in the living room to catch the bugs that gather there, but that is where I draw the line.  There are no spiders allowed in our bedroom and definitely NO BATS!
Luckily, this hotel queen sized bed doesn't come with a ceiling full of spiders.  Although, last night when we laid in bed Willie was sure he had felt a spider on his face.  It must be old memories from queen sized beds of yesteryear!
Willie's second chemo treatment was uneventful last night and we're looking forward to 4 more treatments of the same.  The effects of the chemo don't kick in until 7-10 days after the first treatment so it won't be until the middle of next week until his counts start to drop.  That is when we need to be very careful to watch his temperatures and keep him isolated from company.  We are going to need to be diligent in monitoring his temperature and keeping our home sterile.  That is the piece that I will miss about being in the hospital.  At least there they kept track of his temps and treated his fevers when they happened.  His fevers were always short lived though so we hope for more of the same. 
This morning he had a lung function test so the insurance can approve them to run the donor bank.  You have to be in good physical condition for them to approve the running of the bank since it would be a waste of funding to look for a match for a person who couldn't handle the transplant.  The test was short and involved him breathing into a tube that was attached to a computer.  He passed with flying colors so we hope they can rush the insurance and start running the bank soon.  Please keep the prayers and good thoughts coming that we can find a match soon! 

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!

Chili Cook Off This Saturday!

Willie relaying our thanks to the community before the raffle began.

We had the drawing for the raffle prizes on Monday night at the local gym.  There was a good turn out of about 60 people.  It was hotter than HOT as it was close to 100 degrees outside and there is no air conditioning in the gym.  It felt like we were all getting a good work out just by standing still and sweating!
We ended up with close to 50 raffle prizes and a lot of the people who won were present which made it extra fun.  We are so grateful for our amazing friends who put the raffle together and hosted a fun night for all of us.
This is just a quick post tonight as it is late and we are getting ready to  head to the coast in the morning for a wedding.  We are so happy that Willie is feeling good enough to go to the wedding and we are looking forward to a break where we can both relax. Will has lost almost all of his hair now so he went shopping today to purchase a wedding appropriate hat (since all he owns are SF Giants baseball hats!).  He came home with a fancy brown fedora hat with a bird feather tucked in the side. It is a beauty to behold and I can't wait to see the hat in action at the wedding.
We a bummed that we will be missing the chili cook off this weekend.  This is a community event that happens annually to showcase those with the best chili making skills.  This year they have decided to donate the proceeds from the event to Willie.  We are so grateful and honored that they are doing this for us and encourage everyone to attend and have a good time on our behalf. 

Here are the details of the event:
Chili Cook off
Saturday July 7, 2012
At Jensen Park
1 PM

Happy chili making! 
See you all next week.

Carl's 7 minute Biopsy

We've had a really good week.  Willie has been feeling good and doing small projects around the house.  He was excited to get a yard project done this week that has been pending for a year. He has been gathering rocks to make a flowerbed on the corner of our lot for a long time.  I admit, I have been annoyed with the growing pile of rock that has littered that back corner of our lawn without any vision of their intention.  When I would ask what they were for, I always received a "wait and see" type of response.
I waited, and this week I saw!
Will's friend and Mom came over and helped him create a masterpiece flowerbed with the stack of rocks. I know he felt better after doing it, and he has been careful to keep it watered and cared for since. 
We went back Stanford on Friday.  Our first appointment was with a surgeon named Dr. Spain.  Will has a subaceous cyst on his scalp which is a benign lump that has been there for the past 8 years.  It poses no threat to his health and he could live with it for the rest of his life, but since he is nearly bald now, the cyst is quite noticable and he wants it gone.  I thought his last doctor was arrogant, but he was no match for this surgeon! 
I knew he was trouble from the moment he waltzed in the room like he was God's gift to man.  He immediately sat in the chair, leaned back against the wall and looked at us in the same way an unconcerned teenager would.  He is probably in his mid 50's with an athletic build and a shiny bald scalp.  I thought it funny that he and Willie shared the same hairstyle though his was by choice and Will's by circumstance.  He looked  a bit like "Mr. Clean" and I imagine he shaves his head daily to remain aerodynamically correct for whatever sport he persues.
He looked us up and down before introducing himself and shaking our hands.  He then had Will remove his hat and show him the cyst
"Now what do you think that is?" He said, condescendingly to the resident student who was helping him.
The young kid shrugged then referred to the notes he had taken in our brief conversations a few minutes earlier.
"They say it's a subaceous cyst" he said, reading from the paper.
The doctor looked back at us, narrowing his eyes, as if to assess how in the world we had gained this knowledge.
"That's exactly right," he said, sounding threatened.
"We will need to remove it," he continued "It's a very easy procedure, it will only take a few minutes.  Anyone monkey could do it."
This guy was as arrogant as they come!
"Can you remove it today then?" Will asked, hopefully.
The doctor stared back at Will as if he had just said the most ridiculous thing in the world then broke out into a grating laugh.
"Of course I can't do it today," he said "I'm far to busy and these things need to be sceduled!"
"Well if it's such an easy procedure," Will said, a devilish grin spreading across his face "then we can just remove it at home.  I have power tools."
I laughed, but the doctor didn't.  He didn't know we were joking.
"Well it's not THAT easy," he backpeddled "It will have to be done in an operating room because of your recent chemo and we need to be conscious of your blood counts.  We need to be sterile."
We explained to him how we live 3 hours away and only have a two week window before the next chemo begins so NOW is the time to remove the cyst.  He turned to his calendar and said he can't fit us in until July 10th.  That only gives Will 6 days to heal before he begins chemo, but we took it because his track record of healing quickly has been good.
I entered the date into my phone calender then asked the doctor what time it would be at.
"I have no idea" he said with disgust as if time is something only peasants deal with. "I don't schedule that, my girl will call you. It could be 6AM or 3 PM, she'll let you know the day before."
I reminded him that we live three hours away and a night before call may have us leaving at 3AM to get there so we would really appreciate further notice.  He stared at me like I was speaking another language and I gave up.  I wonder how it is to be so elevated in life that it is impossible to comprehend human things like time and travel!
We were happy to leave his office.  We had an hour break until the biopsy so we went to our favorite secret cafeteria that is a 5 minute walk from the hospital.  It was fun to be there without Willie wearing a mask and drawing unwanted attention from strangers.  We ate our lunch there then went back to cancer center to wait for the biopsy. 
I had made about 10 phone calls in the previous week to arrange for Carl to do the biopsy and no one had been able to confirm if he would be the one doing it.  I didn't tell Will this, so I was very relieved when Carl walked into the waiting room.  What a welcome face!  He came over to say hi and explain that he would just need a few moments to set up then we would get going.  A few minutes later a nurse led us into a room with a tiny cot-sized hospital bed.  The room was about the same size of the Emergency room where Will had his first biospy perfromed and it brought back unwelcomed memories. 
We talked and joked with Carl as he prepared the things he would need for the procedure.  He explained that he didn't like using the kit they had at the cancer center because the drilling device has no handle on it.  This was simply a warning to Will that it may take a bit more time to drill the piece in.  We have full faith in Carl so we told him to go ahead and work his magic. 
He started the procedure at 3:20 PM.  Will was feeling a little pain when he went in with the numbing needle and said he was having a funny nerve sensation he hadn't felt before.  Carl assured him it's because this side of his hip has already had 2 biopsies done on it and the nerves are a bit sensistive.  He gave him 3 syringes of numbing fluid then dove in.  The drilling device was a joke.  It usally is shaped like a "T" and the top cross is used to grip and turn.  This device looked exactly like a regular screwdriver with nothing to hold as leverage.
"See what I mean about the leverage" Carl said, holding the instrument up for me to see.
He inserted it into Will's hip then twisted it back and forth with his thumb and first two fingers.  He looked so dainty, like a queen drinking afternoon tea.  I was worried he would never get into the bone like this, but when I looked at Carl, we he was cool and collected.  He was gazing at the ceiling with a tranquil look on his face as if he was willing the instrument into Will's hip with his mind.
30 seconds later he removed the top piece of the device and inserted the syringe.  Bone marrow aspirate came flowing from Will's hip. 
Success!
Carl looked at me and smiled and I reported that it had only taken him 30 seconds to get there.  Amazing!
He removed the smaller device and inserted the bone clipping piece.  Will felt pain from this larger rod so Carl numbed him some more then went in after a section of bone.  He drilled this piece in with a bit of effort, but had the sample removed in one minute flat.  We crossed our finger as he handed the sample to the lab tech and breathed a sigh of relief when she reported it was good.
It was 3:27PM. He was done in a mere 7 minutes!  That must be a world record or something.
There were congratulations shared all around. I congratulated Carl; Carl congraulated Will; Will congratulated the lab tech and she congratulated me!  Then we all laughed..
We thanked Carl and reminded him that he is the best and that we will see no one else ever again.
He looked bashfully at his gloves as he removed them, as if the praise was too heavy.
"I wasn't going to tell you this," he said, throwing his gloves in the trash "but the woman I did a biopsy on just before I came here said it was the worst she has ever received!"
We gasped in shock.  Who is this woman?  How dare she?  We said if he would give us her name we would set her straight!  The thought of anyone discounting our Carl's ability is insulting!
Carl left by saying he hopes he doesn't see us for a while.  It's funny how you build these kinds of relationships in Cancer care in which you hope that better health keeps you from seeing eachother again.
We left in good spirits after the succesful biopsy and went over to the transplant clinic to see if the results on Will's siblings had come back.  A funny thing happened earlier in the week.  I called to see if they had received the blood samples fromWill's siblings that were sent to the hospital.  They didn't understand what I was asking for and told me that I would have to wait until Friday for the results.  I only wanted to know if the blood got there, but hey, we're happy to take results instead!
The receptionist called the lab and put me on the phone.  The voice on the other line was that of a caring woman.  She asked how I was then jumped straight to business.
"I hate to be the one to tell you this," she said "but neither of his siblings were a match."
I felt like I was falling down a flight of stairs.  We had put all of our hope into having one of his siblings match so they could donate him their marrow.  This was not news we had planned on.  She continued to talk as I tried to gather my thought and emotions.  I don't know what she was saying, but I was suddenly overwhelmed with a feeling of peace.  I knew in that moment that Will's siblings were not supposed to match.  I don't know why, but it is how things are supposed to happen.
The line was silent and I realized she had asked me a question.  I hadn't heard anything she had just said.
"What was that?" I asked.
"I don't want you to think this is bad news honey," she said, "our next step is to run the bank and we find matches for people there everyday.  There is always hope!"
I thanked her for her optimism and asked her to walk me through the next steps.  We meet with the Bone Marrow Transplant Team on July 11th.  This is a 3 hour meeting for the specialist to examine Will and determine his eligibility for a transplant and answer our ever growing list of questions.  We haven't had a chance to ask many questions about a transplant, everything we know has been from internet research and the continual pushing from our doctor to get a transplant.  This will be a good meeting for us to learn more and make the decision if it really is the best route for Willie. 
I realized that we were planning on letting the results from Will's siblings' test make the decision for us.  We were simply going to see if they matched and if they did, we would go for it.  This is not good research, or good faith. 
After the meeting with the transplant team they will submit a request to our insurance to get approval to search the transplant bank.  Apparently this costs thousands of dollars and it takes the insurance company at least three weeks to approve this.  After that, Stanford will search the bank which, the woman told me, usually takes two to three weeks to find a match.  If a match is found, they contact the donor and ask them to come in and give blood again for further testing.  There is a high percentage of people who don't show up for this even though they are listed in the bank so she was eager to warn me of that.  That testing takes a few more weeks so we are looking at a good 9 weeks before we have any more information.
So here we are, back at the "hurry up and wait" phase that we are not fond of.
In the meantime, Willie will continue to get chemo three days a month for the next four months and we carry on with life.
And life is good. 
Tomorrow we will be having a gathering at the local gym to thank everyone who has donated raffle prizes and draw the names of the winners.  We now have over 40 prizes and a countless number of people who have supported us by buying tickets.  We are so grateful to the community and our good friends who have organized this for us.  We met with a group of our friends yesterday morning to discuss the logistics of the event tomorrow.  There were a dozen people there who have all played integral parts in helping us along this journey.  As we met together I looked into each of their faces and thought to myself that this must be what angels look like. 
Big, bulky, bench pressing, angels.
Is there any better kind?
We hope to see all of you locals down at the raffle tomorrow.  Thank you again for all of the support, thoughts and prayers we continue to receive.  We keep marching on!