31 Aug @1852:
New day new ramblings...to update you all on my current values they are as follows:

• WBC - 4.3
• HCT - 34.3
• PLTS - 146k

Inchin up little by little/day by day. Slept fairly well last pm in fact right through breakfast. I've now been given the duty of monitoring all my intake both solids and liquids. Yes I wrote solids! I finally convinced a nurse to allow me at least a try at real food so she was kind enough to give me chicken noodle soup for a late afternoon snack. I was really surprised when the dinner tray arrived because it had real strips of meat, broccoli crowns and rice pilaf. It looked so good but unfortunately at this point in recovery my taste buds have developed into tastebads. Everything I eat has a very distinct taste - plastic. Not very appetizing to say the least but I persevere to put on weight and to keep up me strength - what little I have left.
Not much more to say for now so me thinks this will be a good time to end. To all a good pm and stay healthy.

-me

Good evening to one and all. Tonight my writings are a wee bit later than usual (1950 hrs). But as the 'ol saying goes, better late than never.
Today has been a long day. It seems I've waisted most of the day in bed aslumber - which aint such a bad thang because we all know how much wees love to sleep. Problem being is that I slept through breakfast, which is really no loss considering what the menu has to offer.
Last I wrote I said I had requested "real food". Well the real food menu is as follows:
Bowl of broth
Popsicle
Cup of tea
Juice
Jello
You've gotta start somewhere. The issue I wasn't prepared for was my stomach wasn't used to real food so with every loving sip of vittle came out in a furry of spittle. It's sooo amazing how little one can have in ones stomach can produce. I believe I upchucked more than that famous upchucking woodchuck - a story yet to be proved! That my friends was yesterday and I may say today is another day. Stomach's more settled and I can eat most of my tray - food that is.
Me madre is in the hood and is visiting daily. We now have secured the housing across the street. Unfortunately I left the address/phone# in my room but rest assured I'll get it in the next insert. As for vacating my current housing supposedly I'll be out of here on Tuesday and in the new housing as long as everything remains status quo.
I took a nice long walk today including setting foot outside and enjoyed sitting in the shade and admiring the incredible gardens that draw you up to the front of Hospital. I was accompanied by me madre and a dear friend Paula who happens to work here at Stanford and drops in to check on me on a regular basis for a friendly game of Cribbage and Yahtzee. I admit it took a bit out of me walking back to my room. It still amazes me how weak my body still is even though my brain says I'm ready to run and play and cuddle with Robyn - with whom I miss daily.
Well kids, It's that time again to mosey on back. A nurse just came by to tell me she needs me back in my room to draw blood.
I miss you all and appreciate all the comments more than I can express. On that note, to all the staff at French - I thank you for all you have done to get me here and will never forget your love and respect you gave me and hopefully I to you. Abby - congrats and your news brought a tear. Brently- what's with the obsession with pictures LOL. To those I inadvertently left out much love to you and all your well wishes.

-me

Well kids, another day passed in BMT land and believe it or not I'm still alive and kickn'.
I promised #'s today regarding my progress so here goes:

Normal Values:

Platelets (PLTS) 150K - 400k
White Blood Cells (WBC) 4.0 - 11.0
Hematocrit (HCT)(Red Blood Cells) 37 - 50

My current values:

PLTS @ 66k
WBC @ 2.2
HCT @ 35.1

Considering we started with Zero on Day + 1 and we are where we're at on day +21, I'm pleased with the progress. It's been an extremely painful process but we're gettn' there!
Oh by the way, I'm moving today into new digs...nothing too exciting - just down the block in the same housing complex - E UNIT. I'll be sharing with another sucker er, I mean survivor. I also requested to initiate real vittles for the first time in weeks so we'll see how that goes too. We're still hoping to move into my temporary digs - which are located across the street - by the end of this week. I feel like such a gonad...nomad being bounced around Stanford U.
My new address is: E-UNIT / Room/bed #38a / Phone #650.498.3213. I requested the window bed and was granted my wish! Hopefully I wont be there for long.
Well kiddos, I bes' be gettn' to my new view. To all best wishes and above all....stay healthy!

-me

This should be interesting today because I'm typing minus my left ring finger because it's taped up with an electronic device to monitor my O2/heart beats per minute. Other than that all is basically the same 'ol x2.
The latest addition to my medicinal repertoire is a rinse - consisting of a very small amount of cocaine, aiding in the constriction of blood vessels which helps reduce the painful effects of my oral issues - lesions on both sides of tongue as well as underneath, lesions on both cheeks and the continual shedding of cells from my esophagus and mouth. Admittedly I appear to be doing much better but as I have said over and over, looks can be deceiving.
True the outside appearance is much improved but unfortunately it's what's on the inside that still burns like a son of a gun! Oh well, it's all part of the fun - YEEHAW!
My numbers continue to climb which is what we're aiming for. I'll have numbers by 'morro for those who are keeping track.
Well kids, I'm not much for writing this pm and on top of that I'm just plain tarred. Until next time I torture you with my lack of witticisms and writing skills, I bid you adieu. Stay healthy.

-me

Hi kids! It's been waaay too long since I've had the time let alone the energy to write to y'all. Trust me when I write there is plenty to write about but I was restricted to my room whilst suffering - scuse me, surviving this whole ordeal.
First and foremost I would like to take this opportunity to thank "Roomate Robyn" for keeping those inquiring minds fed with all the news that's fit to print. This hasn't been easy in any way shape or form for either one of us. Shanks.
As for the butterfly description...very sweet but I would have to say the moth is more appropriate due to the fact that I was, as of a few days ago, seeking the solice of the "white light" as opposed to breaking out into a beautiful colorful being - but I appreciate the sentiment and it's not lost.
Well kids, I'm getting tired and it's time to get back to my room. Until next time...

The mother cell has been located

Curt's blood count almost doubled in one day - he was up to 1.4 by last night. The mother cell has been located! As you can imagine this is very good news for Curt to hear. He getting more comfortable everyday although still cranky, which the nurses say, is a good sign. It means he's ready to get out of here and will do whatever it takes to get out of here. Today is day+17 so he is right on schedule and by day+20 he will probably be a functioning person again.

Curt's sister Cara is coming up today so I can get back to SLO and have 1 day to deal with a very neglected house and, yard and get organized before school starts. This summer has been a blur and soon I will be able to say the same thing about the BMT. It will be but a memory.

So - from now on you will hear straight from Curt. He will have to catch up on the 2+ weeks of comments, but rest assured that he will be writing his witty narratives very soon.

Robyn

The AMAZING butterfly!

WOW - what a difference a day makes. Curt's Dr's told us that his blood levels are up to .8 (woohoo!) this AM and that he is doing fabulous. They told us that within the next 12 hours his mouth will get better very quickly and that he will probably be able to start eating as soon as Mon. His face is no longer swollen or scabby and his rashes are all gone. He was able to shower by himself this AM and he rode the life cycle for 20 minutes. We were told that by tomorrow he will be able to walk around outside the room (with his mask on) and that he will probably be released to the on site housing Wed or Thurs.

I am blown away by the transformation - it is truly amazing. When I arrived yesterday Curt was cranky and just wanted to get the F--- (as Curt put it) out of here. He will be getting his wish soon and we want to invite any and all of you that want to come up to visit to do so. It was a hard journey and although not long by society's standards, brutally long for some one to go through.

Thank God we are on the final stretch and now we can appreciate our second chance in life~

Robyn

It's me again

I'm back and Curt is doing much better. According to his Dr's this will be the last weekend he will spend in the hospital and then he will be moved to an on-site apartment. I personally find that hard to beleive but I have to admitt that everything they have told me in the past 2+ weeks has been accurate.


If this indeed happens, we will be ready to accept volunteers to come up and spend the weekend with Curt so his Mom can have a break. For those of you that are not familiar with the schedule; kids are not allowed to stay in the apartment once Curt is moved. In fact only one other person is allowed to sleep in the apartment besides Curt. Children can come visit, but have to abide by the same rules as adults (mask up). With that being said, I will not be able to come up the weekends that I have Corey. So on those weekends we are asking for volunteers to come hang with Curt.


It would require:

1. We are asking for volunteers to come up any time on Thurs. so Curt's Mom can get a full 3 day break. She is almost 81, in good health and very capable, but we feel like a full week would be too much for her. So the dates are all Thurs-Sun.

2. As I said, no kids are allowed to spend the night, and only one person can actually sleep in the apartment with Curt. Sorry Brent - that leaves your threesome out :-0.

3. He will require to be taken back and forth to the clinic every day for a couple of hours (yep - even on the weekends). He may also need to be taken to the ER in the middle of the night if his temp gets too high.

4. He's not allowed to go anywhere in public other than the clinic; so bring up you're favorite movies, a good book and your sparkling conversation cause you're gonna be stuck inside most of the time.

I apologize if I seem too rigid, but we are dealing with life or death now and we can't be too careful. I'm not trying to discourage people from coming but I want to make sure you know exactly what to expect and your limitations.

I'm not sure about the ammenities of the apartment yet, more details to follow once we get in.

Of course family will get first choice of the weekends but here are the dates so far.

Sept 11-14 (taken)
Sept 25-28
Oct 9-12
Oct 23-26
Nov 6-9

We are hoping he will be home by the 3rd week in Nov.

Robyn

Curt had a rough night so he is very tired today. The sloughing process has worked it's way down into his esophagus and he gives him intense heartburn, even though he hasn't eaten anything in a week). His body produces this thick flem that clogs up in his throat and has to be sucked out. Again this is all very normal and it will continue to work it's way through his system and out. Again, his last dose of methatrixate is over and he should be on his way to recovering from these side effects soon. We are at day+12 today and by next weekend he should look and feel considerably better.

God's timing is perfect and as a result of that I will be back up here next week on business. So I will go home tonight and get Corey handed off to his Dad tomorrow and come back up on Wed. Depending on Curt's families availability will determine if I will stay through the weekend or not.

So once again, it's time out for now until Wed.

Roommate Robyn

Thing are looking up!

The Dr's were very impressed with Curt's progress today. Although he has what only can be described as a white strawberry on the bottom of his tongue (it looks like his tongue is separating from the bottom of his mouth). Other than that, his mouth is getting better everyday which is HUGE right now. He's talking almost completely normal now, although it does exhaust him. His blood levels are also getting better. Last night his platelets were high enough on their own so he didn't need to get blood - yea!

Curt's becoming more of his old self and interacting with the nurses and becoming one of their favorites (some things never change - LOL). We are again blessed with a great nursing staff who are all entertained by his sense of humor.

Life is simple but good for now. We are enjoying watching the Olympics together and he just wants to catch up on what's going on in the outside world. Remember he can't even leave his room because of germs EVERYWHERE. All of your comments have been so helpful and inspirational to him and me. So please keep 'em coming. He should be up for visitors next week so be prepared to suit and mask up.

Blessing to all~

Roommate Robyn

I'm baaaack!

Curt called me Tues night and asked me to come back up. So after lots of day care juggling, I'm back. Thanks to my family that came to my rescue with Corey when Curt needed me! I also want to thank Trust Automation (my employer) for their constant compassion and support during the last 9 months. They have allowed me the flexibility to be where I need to be, whenever I'm needed. Going through something this stressful is difficult in so many ways; but they have relieved at least a portion of that stress and I am forever grateful to have such an amazing group of people in my life.

Curt although he looks worse, he sounds better and feels some what better. His face looks like a burn victim; it's very swollen and peeling and his lips are cracked and bloody. His mouth is still full of soars, but he's able to speak more clearly and it doesn't sound as painful when he does speak. When I got here today he was in the middle of his first session of physical therapy. His physical therapist was very impressed with his dexterity. Tomorrow we are going to try the life cycle again and see how he does. He also got a shower today - yahoo! Trust me, it's the little things that mean so much to him right now.

Tomorrow is day+11 and it will be the last day that he gets methatrixate. After this last dose he will feel and look noticeably better. We are over the middle hump and it will only get better from here.

I want to thank Rich and Laura O'Neil for coming up here this week to visit and decorate Curt's room with pictures. I noticed them the minute I got in his room and I was so touched by your thoughtfulness. You're support has been appreciated more than you will ever know.

That's all for now - more tomorrow.

Roommate Robyn

Should I stay or should I go

Today is going to be the hardest day to date for me because I have to leave. Unfortunately the bills keep coming and I still have a child that also needs my attention. I've been told it's OK, Curt will have the best care and as he gets worse (which he will) the most experienced nurses will be assigned to him. I've been told his mouth will get worse and although I can't imagine that being possible, everything I've been told before has been spot on accurate. Eventually all Curt will be able to do is nod yes or no. So please don't be offended if he doesn't accept or pick up phone calls. I thought texting would be the better option but evidently, not so. He will experience what is called B16 which means his hands and feet will swell and he will not have any dexterity. This will go on for up to day+20 (he's at day +5 today). So as hard and frustrating as it will be, we won't be able to communicate directly with Curt for a few weeks. Again this is all perfectly normal and part of the sloughing off process. Are you thinking beautiful butterfly????

Curt is still keeping his sense of humor and trying not seem like he is in pain (I know better). He's been so brave through this entire process and I'm so proud of him. I asked about visitors and was told visitors are OK, however he won't be able to communicate so it's probably not the best timing. He also won't be able to access the blog for obvious reasons so for now it's time out; but only temporarily.

Roommate Robyn

Today Curt seems more comfortable. He's been using his PAC regularly to help with the pain and has begun the IV food. We were able to watch part of the opening ceremonies of the Olympics last night. However, they were so long we ended up turning it off @ 10:00PM, but we are enjoying watching the various events today. Stanford is very quiet on the weekends. During the week this place is buzzing like LAX (looks like it too), doctors, nurses and staff all over the place. But on the weekends you can hear a pin drop. For those of you that plan on visiting on the weekends here's a tip; park in the employee parking lot. It's empty, they don't monitor it and it will save you $6-$12 a day in parking fees. Not much to report today (that's a good thing). Curt's resting comfortably and it's a gorgeous day by the bay.

Roommate Robyn

Today has not been a good day. Before this whole thing started we were told that this would be worse than anything Curt has already gone through and I honestly didn't think that was possible. Well it is! The best way it's been described to me is a butterfly. A butterfly lives in a cocoon and sheds his cocoon to become a butterfly. Curt is in the shedding stage; he's shedding all of the old Curt cells and replacing them with new ones to become a beautiful new butterfly. His mouth is so soar and swollen he can barely talk or be understood. We are not encouraging him to talk unless he needs something. This is the hardest thing I've had to watch with him so far. It's heartbreaking seeing him in so much pain; knowing there is nothing I can do about it but hold his hand. He does have a PAC (patient automated control) for his pain and he can hit it 3-4 times an hour. At first the doses weren't high enough for him but they have upped the dosage and he seems a little more comfortable. Evidently this will last several days and I'm praying that he will be on the upward swing before I have to leave on Sunday.

Keep praying for us~

Roommate Robyn

I'm getting quite the education here this week. This is what I've learned so far:
The bone marrow Curt received were actually pure stem cells, it looked more like V8 juice than the blood they draw from you when you give blood. It's amazing how far technology has come to sift these out. When these stem cells are released into the body they have 1 mission, find the mother cell. I know it all sounds so Star Treky, but it's true. All of those cells know exactly what to do and while they are reaching their quest, Curt's body reacts to it. It basically affects the bodies plumbing. The mouth is full of soars which makes it difficult to swallow and eat food and let's just say the other end doesn't fair any better. He has 8 IV tubes going into his body to provide him with meds, hydration, food, etc. It's quite the ordeal for him to just get out of bed without tripping on or tugging at a tube. This is all completely normal but hard to watch someone go through. It's not until the stem cells reach the mother cell that Curt's blood levels can start reproducing normal plallets and white blood cells. This is the reason for having to stay in the hospital so long. It takes time for his blood to reproduce.

So there is your biology lesson for the day - LOL

Curt although uncomfortable is doing well, he was able to take shower and ride the life cycle for 15 minutes. He's been quite the animal today! :-)

Roomate Robyn

Day+1

Today Curt started his day+1 meds. These are the meds that fight against the graph versus host disease. Again for those of you that are not familair with BMT's; graph versus host is the biggest risk in BMT's. It means that the body rejects the BMT and starts attacking the organs one by one. He also had his chest exrayed to make sure that nothing is building up in the lungs. That will happen every Wed.

I've got some great pics of him with his gas mask and as soon as I can figure out how to add photos to the blog I will do so. Or I'll have Heather do it when I get back to SLO :-)

Roomate Robyn

The Deed is Done

Curt completed his transplant @12:45PM today. It took about 45 minutes and the attending nurse stayed in the room the entire time talking to us about kids, jobs, health, etc. So far Curt's had no apparent side affects and has more energy today than the past serveral days. He did have kind of a cool thing happen during the transplant regarding his dad letting us know that he was in the room with Curt. His dad has been dead for years but Curt noticed some writing on the bone marrow bag Cris donated. He said that writing is exactly like my dad used to write. I told him it's because his Dad is in the room with us watching over you and we both just froze. It was his dads' blessing to both of his boys. When we both think about it, chills go up our spins. Anyway, Curt is alert, hungry and clever as ever. He has been moved to a new room E132 for those of you interested, or you can call direct @ 650-498-3207. He's been given a live cycle and encouraged to ride it daily. His blood can only go up from here and that is what will determine how long he will remain in the hospital.

Thanks to all today for your calls, e-mails, texts and prayers. We are so blessed~

Roomate Robyn

Final Countdown

Curt seemed to have more energy today. He was still able to kick my butt in Boggle for 2 hours which frustrates the hell out of me, but I keep going back for more...He's also quite hairy which is new from when I saw him last week. His beard and hair is growing back with a vengance and he requested that I bring the clippers so he can clean himself up :-). The scar from the omaya insertion/removal is barely visible now, unless you knew it's was once there.

BMT is scheduled for 11:00AM tomorrow. It will be administered in his room (although they plan on moving him to a new room tomorrow with double doors), for some reason that's important. He's been told to do as much walking around as he can today because he will be too weak to get out of his bed for the next several days.

So for now Curt is 'livin' the dream' in a peaceful slumber.

Stay tuned - Roomate Robyn

The fun has begun

Hi all, this is Robyn keeping the info coming but not with near as much pizazz as slobody. Curt has now been admitted into Stanford Medical Center and they have begun to take his immunity system down. As you've read, he's been irradiated numerous times a day, numerous days in a row and now he is getting a few days of chemo. His transplant date is still set for Tues. Right now he is just incredibly tired from a combination of the drugs is on and his blood levels being so low. For those of you who are not familier with the BMT process; what they are doing is taking his immune system down to nothing so when he recieves the BMT, his body has nothing to reject it with. If you've been texting or calling that is the reason you are getting no responses. He's pretty much out of it and he will be like this for at least a week if not longer. But we all know what a fighter Curt's been through this entire ordeal and before we know it, he will be zinging his one liners at us when we least expect it; making us all laugh.

Thanks for you thoughts and comments. Curt loves reading them and it makes him feel like he's still a part of the real world instead of this surreal world we are currently dealing with.

Roomate Robyn