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| Our cute neighbor girls made these awesome cupcakes! We liked them so much, I had to share! |
On Tuesday we went back to Enloe Hospital to meet with Dr. Lombardi. He is the doctor that diagnosed Will's Leukemia and started us on this crazy journey. We were actually looking forward to seeing him, which is funny, considering he is a doctor that one would hope they would never have to see. We arrived at our appointment early and waited a while for the doctor to show up. He finally entered the room at 1:50PM. He still looks tired, but his classy blue shirt and red tie drew the eye away from his exhausted pallor. He's had a hair cut since we last saw him and he now looks younger and even more worthy to be on the cover of a GQ magazine.
He sat on the exam table and announced that he only had 10 minutes to meet with us. I doubt there is never a time when he's not in a hurry, so we were happy to take any time he could give us. He looked Will up and down.
"Looks like you came through it well!" he said, referring to the chemo.
Will caught him up on the treatment and detailed how easily he breezed through a treatment that puts most people down for months. He finished by telling him how we got out of the hospital in mere 26 days when the shortest stay on record is 29 days.
"There you go again," he said with a laugh "setting more records!"
We've heard that before, but it isn't getting old yet!
The purpose of this visit with Dr. Lombardi was to find out if we could do Will's follow up chemo treatments in Chico which is 45 minutes from our house versus going to Stanford which is 3 hours away. Lombardi told us that he thought they could do the treatments, but it would all depend on what drug the Stanford doctors choose and the dosing of the drug. He opened Will's file and held out a bound stack of papers about 1 1/2 inches thick.
"I'll admit I haven't read through your history yet" he said, holding the stack up for us to see "but from what I've seen, they haven't decided on a dosing yet, so as soon as we know that we can let you know if we'll be able to do it here or not."
We forgave him for not reading the book that is Will's medical history. That only represents a month of his care so I can't imagine what the files must look like on people who have been fighting cancer for longer. Lombardi didn't seem to be bothered by the amount of text though. He strikes me as the type that reads his patients medical histories in bed at night while snacking on a bag of potato chips.
The conversation turned toward bone marrow transplants and the air and the room grew tense. It was not something Will or I were comfortable talking about. The idea of a transplant has been on the table from the moment we entered the hospital. They drew blood when we first entered with the intent of finding out more about Will's molecular structure and eligibility for a transplant. We didn't hear anything more about it until the night before we were discharged. That night the resident doctor told us that Will is a very good candidate for a transplant and as such, the team was thinking it would be best for him.
We didn't like that. It made no sense to us that just because he is a good candidate means he should undergo such a risky transplant. We shared that with Lombardi and he offered some more education on the matter. He explained that leukemia often comes back after treatment and each time it comes back, it is a bit harder to treat because the cancer cells that hang around become resistant to the chemo. In Will's case, he has already received some of the strongest chemo drugs they have, so there is a big risk that if it comes back, the cells that survived these big guns will be untreatable. In that case, there is little they can do. With a transplant comes a better likelihood that these cancer cells will disappear and be replaced by healthy cells.
This is what I needed to hear. It hadn't been explained to us that treatment would be harder in case of relapse. I have been working off the mentality that he will get through these maintenance treatments and we'll carry on with life as normal where he would be in remission forever. I'm learning that this was a naive way of thinking.
We left Lombardi's office with a new understanding that our journey is just beginning. That month stay at Stanford was just a warm up for the long race we are about to run. We were both feeling a little down, but Willie knew just how to fix it, we went to a movie! It felt so good to do something so normal.
Willie opened the door for me to enter the theater and his shirt sleeve moved up his arm, revealing his picc line sleeve. The sleeve is made from mesh and you can easily see the cords of the picc line coming out of his skin. I watched as a child noticed this on his arm and stared at Willie like he was some kind of alien. He couldn't shake the eyes of this little guy as we bought our tickets and went into the theater. I wondered for a moment what I would have thought, before embarking on this journey, if I saw a picc line hanging from the arm of a stranger. Would I judge him? Would I think he was sick because of some bad choices he had made in his life? Would I not want to touch door handles after him for fear of compromising my own health?
If I have learned one thing in this trial it is that you can NEVER judge anyone by their circumstances.
NEVER.
We saw "The Avengers" which was a fun, action packed, super hero movie. We both left the theater feeling like we can take on the world with our super hero powers. It was exactly what we needed. We had dinner afterward at our favorite Chinese restaurant and everything felt normal. Willie is getting color back in his face. His hair continues to fall out, but with a hat on, he looks just like the guy I met years ago on the east coast. I find myself having a lot of flashbacks lately and feeling nostalgic as I look at his clean shaven face and recall memories from the years before the beard.
When we started dating he had side burns, but no goatee or beard. He didn't need facial hair to be intimidating. I was secretly afraid of him while simultaneously feeling a strange attraction. That was part of the draw I felt to him. I had to know everything about this guy.
I remember the night of our first date like it was yesterday. He had groomed his sideburns into an sharp defined angle and his face was baby smooth after a fresh shave. He smelled of soap and old spice deodorant, but no cologne. This was a plus for me. I had just got out of a relationship with a guy that wore far to much cologne. I had a headache every time I was with him and couldn't figure out why until months later when I was in a store and smelled his cologne. I instantly got a headache and was glad that our relationship didn't work out.
I was much happier with the scent of soap and deodorant. We got in the company van and Will drove off into the Vermont back roads in a direction I had never been. We rode the winding dirt roads for far longer than I was comfortable with. We finally emerged into a quaint town with an old English flair to it. He pulled up an Italian restaurant that seemed out of place in this New England town. Italian music was piped through the restaurant and the only lighting was provided by candles set on every table. The walls were painted to look like the Italian canals and the entire place smelled of garlic and wine. This was a place to fall in love.
It made me nervous.
I reminded myself that I was only there to enjoy a "thank you" dinner that Willie insisted on taking me to after providing him with weeks of meals in his room while his knee injury healed. I had no intention of falling in love with this guy.
None.
Zip.
Zilch.
Not a chance!
But then there was the candlelight....
We sat across from eachother at a table that was so tiny, we were touching knees. A long candle was stuck in an old wine bottle and I watched as the wax slowly dripped from the candle down the side of the bottle. There were layers of old wax in ten different colors from candles that had long since burned themselves out. How many other couples had celebrated their love over dinner with these candles? I wondered. What stories could those layers of melted wax tell? I knew our candle wax would tell no story of love. It could only speak of friends eating lasagna on a week night in the summer.
Will had lasagna. It's funny I remember that, but I do. I can't remember what I had for dinner last night, but somehow the lasagna he ate that night has reserved a special place in my memory. It was cheesy lasagna and came in it's own fancy shaped dish. We oohed and ahhed as it came out and Will said it was good.
"Do you mind if I have a beer?" he asked, as he shoveled a large bite of lasagna in his mouth.
I shrugged "I don't make your decisions for you." I said, but I desperately didn't want him to drink.
He stared at me for an uncomfortable amount of time as he weighed out my response. He then flagged the waitress and ordered a beer.
That moment changed our dinner from a date into a friendly hang out. He was obviously not marriageable material if he drank! I was actually relieved that I didn't need to try to be marriageable material myself and I relaxed for the rest of the night.
When we got back to camp that night I was conflicted. I had a great time with him and couldn't deny he was attractive, but he just wasn't for me. That was easy for anyone to see. But I couldn't shake my interest in this mysterious man.
I now know that his mysterious nature is unshakable. Here were are 6 years later and I'm still mystified by him!
Wednesday morning we drove down to Stanford. The drive is about 3 hours one way and we got there around 1 PM. Willie had labs drawn and had his picc line dressing changed, then we went to another area of the clinic to meet with the doctors. Our appointment was at 3:15, but we didn't get called into to see the doctor until 4:15. This is just another example of how we are improving our patience!
We met with our Rico Suave doctor who neither of us are fond of. He didn't even show up with the team for the last few days we were in the hospital, and always seemed to be preoccupied with his appearance when he was there. We know he's good at what he does, but the caring, human element is missing.
He entered the room and flashed his movie star smile. His earring appeared to be bigger and shinier than I remember, and his hair was gelled into gentle spikes. He shook both of our hands and jumped right into business.
"We need to move forward with the transplant," He said, as if we had already made a decision to do it. "The best case will be to do it after your next round of chemo next month."
This was far too much information to spazz on us. We just stared at him.
"Hang on," I finally said "We haven't even talked to the transplant team yet and know nothing about it. And we were hoping to do his next chemo treatment in Chico."
He shook his head as if I was the most uneducated being he had ever encountered. How he must stoop each day to talk to common folk!
He backed up and explained the coming steps for us. We had previously been told that Willie would need chemo three times a week for a month. That was wrong information and he informed us that he will actually need chemo three days a week, once a month, for four months. He encouraged us to continue the treatments at Stanford since all of his care has been received there and we would be guaranteed to receive the right dosage and drugs where that can't be certain when dealing with multiple doctors and hospitals.
We agreed, and going to Stanford one week a month is not inconvenient. He said Willie is scheduled to begin his next round on July 16th. We are at a cross roads in his care right now. One road takes us down the path of chemotherapy only treatment. This plan involves receiving chemo treatments once a month for four months after which he will be declared in remission and we'll carry on with life. The risk with this is that the research shows that most cases of leukemia return within a few years at which point his cells may be resistent to chemo and he'll be untreatable. The only known "cure" for leukemia is a bone marrow transplant. This involves replacing Will's marrow with healthy marrow from a donor. This can only be done when Will is in remission which is why the doctors are pushing him to do it ASAP. He will need to receive a round of chemo right before receiving a transplant to ensure that all cells, good and bad, are killed so the new cells can have a spotless environment to thrive in.
The transplant comes with heavy risks of the body rejecting the cells. In this case, the body can attack itself and damage it's own organs and lead to death. To reduce the risk of rejection, the patient has to be on immune suppressing drugs and live in isolation for months following the transplant. The patient also has to stay within 30 minutes of the hospital for 100 days following the transplant.
This is the piece we hadn't heard yet and we both gasped when we heard this. 100 days! We thought the one month we had to stay was bad, but they are telling us we will be gone for a good 3-4 months if we do the transplant! We were both a little numb. I tried to formulate thoughts and ideas after this, but my mind was racing as I tried to figure out how in the world we will be able to do that.
We were still on the fence about transplant, but this doctor is very convincing and clearly is an expert. I had been doing research on the categories of prognosis they put leukemia patients in. We have never asked what Will's category is so I asked the doctor.
He told us that Will is in the low intermediate category. My heart sank. The research I had read stated that people in this category have 15-30% survival rate without getting a transplant. It didn't made sense to us. How is it that Will skated through the treatment and is doing so fantastically now, yet his is in the lower category? He explained that this is based on tests that were run on Will's cells at the molecular level along with extensive genetic research that was done on his DNA. This is all beyond our capacity to understand, but I was glad to know how they choose their categories. His reaction to the drugs have no relation to his molecular level, but this doesn't mean his strength and physical condition won't be a great benefit to his survival.
It was a lot of information to process. Heavy information. The kind of information that you think you understand until you leave the office and realize you are simply not educated enough to make such a weighty decision. We are at a loss. The obvious choice, and the one we have since made, is to go with the transplant. We have a meeting with the transplant team next month to find out if his siblings are a donor match and we will also learn more about transplants. Right now we are working off of the limited information we have received from doctors and the wonders of the Internet. We are looking forward to learning more and seeing what the options are.
There was a dark cloud over us on our drive home.
"You're not going to die" I finally said, in the heavy silence that accompanied our drive "that's not an option and we aren't even going to entertain that idea. You are going to be fine, we just need to do our research and trust that God will guide us in making the right decision." He nodded and we drove for a while in silence.
"We'll just do what we have to do." He finally said and the mood changed as he spoke this resolution.
We will do what we have to do. It's a simple statement that holds the heaviest of implications. We don't even know what it is that we have to do yet, but we still have complete faith that everything will work out.
And it will.
In time.
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Missy love u! You and Willie will make the right decesion. Im praying for u as u do what u have to do. God guard and keep u both. Hope u can feel my hug from hundreds of miles away!
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