Thursday, October 13, 2011

Memorial Endowments

After much thought and working out details we have two chosen two memorial endowments in Doug's name.  It was not an easy task as he was so talented in so many facets of his life and subsequently made very strong connections in so many places.  Not only did we want to ensure the memorials were linked to Doug's life and love of it, but we also wanted to ensure they would help carry on a legacy for the boys.  Doug had already devised so many plans for his future with Brogan and Ethan and each of these memorials contributes to keeping him present in their lives as well as the lives of so many others.

Green Mountain Club, Long Trail Shelter Maintenance Endowment:

As many know between Doug's work as a Landscape Architect and his personal passion for hiking and the outdoors, the mountains always provided a certain peace and solace for Doug.  While a student at the University of Vermont from 1993 to 1997, Doug and his friends enjoyed many adventures on the Long Trail.  In October of 1997, not long after graduating, Doug solo hiked the 273 mile length of the Long Trail in 18 days.  Even though he did not live in Vermont for the following 10 years he made many trips back here and almost always made time to hike some part of the trail.  When Doug and I settled in Vermont in 2007, we choose a home in Hinesburg where we look out across a forested landscape crowned by Camel's Hump.  Brogan's room takes in a great view of the mountain and he had the fortune to be able to hike it a few times with Doug when he was small enough to fit into the kid carrier.

The Long Trail and its shelters are maintained by the Green Mountain Club, a 101 year old organization dedicated to "making the Vermont mountain play a larger part in the life of the people."  We are working towards endowing the life maintenance of a shelter near Camels Hump in Doug's name.  Shelters are either primitive 3 walled lean-tos or small cabins that can offer a roof to backpackers without tents.  The shelter will have a plaque to honor Doug's memory and will be installed on an interior wall.  The shelter will serve as a place for friends and family of Doug to hike into and gather to remember him.  The family has asked Keith Wagner and Jeff Hodgson, Doug's former employer who were also mentors and friends, to design the special memorial plaque.  Even though Doug is no longer with us, he will continue to push many towards adventure and physical pursuits.

Checks made out to the Green Mountain Club can be mailed to:
Green Mountain Club
4711 Waterbury-Stowe Road
Waterbury Center, VT  05677
Please be sure to indicate the donation is in memory of Doug Crowell.


Alternatively, click here to donate online with a credit card.  Please be sure to click the box signifying, "Yes, this is a memorial gift."  Checking the box will bring up several fields including one for the honoree's name: Douglas Crowell.

Doug Crowell Memorial Scholarship Fund, Xavier High School:


Doug attended Xavier High School, a Catholic Preparatory High School in Middletown, Connecticut from 1989 to 1993.  Doug embraced many opportunities presented to him at Xavier that would not have otherwise been available to him.  He believed that his education there laid a very solid foundation for his future.  Xavier is where Doug first started running competitively and developed that passion that stayed with him throughout his life.  He made many good friends while at Xavier that he continued lifelong friendships with.  Doug and I met while he was at Xavier and I was a student at the sister school, Mercy.  Xavier pushed him to be  a better student than he may have thought he was when he first started there.  He had many teachers along with his running coach that encouraged him recognize even more of his potential and talents.  Doug gained a solid foundation at Xavier that later helped him in obtaining his Bachelors at UVM and Master's at Rhode Island School of Design.

With the Endowed Scholarship Fund, Xavier's mark of Doug's life will live on by helping to support a Freshman through Senior with tuition.  The family has worked with the school to determine the criteria that will be used in selecting the recipient of the scholarship on an annual basis by drawing on some of Doug's best attributes that made him such  dynamic student himself.  Annually the family will be invited to the ceremony where the Scholarship will be presented in Doug's name to the student for that year.  The boys will get to be a part of this and see Doug's name and legacy live on while helping other students similar to Doug.

Checks made out to Xavier High School can be mailed to:
Xavier High School Advancement Office
181 Randolph Road
Middletown, CT  06457
Please be sure to indicate that the donation is in memory of Douglas Crowell


Alternatively, click here to donate online with a credit card.  Please be sure to write "In memory of Douglas Crowell," in the field for notes or comments.


We know that Doug touched many peoples lives and had a significant impact on many.  Nothing will ever be able to replace his indomitable spirit, but to help his name live on in meaningful memorials that help to capture some of who he was, gives us all something to remember.

Thank you all for your thoughtful remembrance of Doug's life.

Saturday, October 8, 2011

The Adventure is Over

From the time Doug got diagnosed he called his Leukemia an "adventure."  As you know from the blog he did not approach it with anger or hate.  That is what likely kept him mostly smiling through seven months of suffering. 

I have always looked at the word adventure as a positive thing.  An adventure always evokes feelings of excitement about the unknown that you will be conquering.  Together we felt we would be able to conquer this.  Together everything we faced was more manageable.  After September 10th, everything got much more difficult as our adventure turned into a solo trek.  One, where I must be careful to navigate each day and each step.  I feel worn and defeated from our adventure.  I feel I have all but lost the strength I had during the previous seven months. 

Strength is easy to find when you are with someone who you love so deeply.  I heard more times from February to September, that people could not believe how I strong I was in the face of all that we had been dealt.  Doug made it easy to be strong.  Truly easy....I never really had to work at finding my strength, with him by my side.  Today, I find myself digging deep to find a different strength and I keep coming up short.  Sure, we have two amazing boys who keep me busy and smiling and right now do a lot of guiding me through my days.  But, there is a definite ache I can not cover over and can't imagine getting relief from.

I feel pain in my heart and in my gut. Emotions that were once controllable, seem to be uncontrollable.  I feel anger at all the suffering Doug endured over the last seven months to have this be the final outcome.  He was not cut one break along the way with his leukemia and fought harder than the doctors or nurses had seen any patient fight.  He wanted so badly to live which is what makes his death all that much harder and seemingly unfair.  All the prayers, all the support and his unfaltering will to beat this did not prevail.  I don't understand why, so it is damn hard to try and explain it to your 4.5 year old who wants to know, "why God took our daddy when we still need him."

Our adventure is over and the kids and I have started to embark on our trek.  A trek that will hopefully lead us to healing and happiness again over time and not have our lives be defined as the kids who lost their father to cancer and the woman who lost her husband to the same.

Writing was always an outlet for Doug.  When he got diagnosed with AML I too started writing.  It is hard not to - you need a place to put all your feelings down and get them out.  In the wake of overwhelming feelings, I figure why not let them out there.  It can't make things hurt anymore and maybe in some way can help me to feel release.  After all, we as a family will be < aml. 

Sunday, August 14, 2011

Rock and Roll

I am not emerging from the woods to greet you just yet.  Rather, like mail from a distant post office I am just touching base.  Today is day +66, meaning I am 66 days out from the day I received my stem cells.  I am making progress.  I was able to get out of bed and walk two laps around my room today, sit in a chair for 1/2 an hour, raise my arms over my head 5 times....you get the idea.  Progress is slow, but the doctors feel that I have started to make a recovery.  It is going to be more slow going, but they say I should return all of my normal functions.  I've been dreaming of swimming and lemonade non-stop.  It looks like I will have to wait until next year for those as my stomach and immune system build themselves up.  It seems like a long time, but really I just want to be home with my family and that will come much sooner.

On the upside, I saw my boys this weekend when they came in to visit me on Friday.  It was a great visit.  Watching the boys run around the room and fidget with their mask and gloves is a riot.  For a special treat Brogan brought me the gift of music.  He brought his guitar and his little red pick and spent most of the visit hemming and hawing over when, who and how he would begin the song.  When he finally got the courage the music took over and he ripped off his mask and got one verse out.  The lyrics were, "one, two, three..."  He threw his fist in the air and ran out of the room.  It was straight up rock and roll.  Ethan jumped up and followed Brogan straight out the door so he could get a cookie.

Thank you to everyone who have been so supportive and loving.  It touches me everyday and I can not wait to get out of here and see you all.  That is all I can do for now.

Thursday, July 28, 2011

Guest Blog Spot....

Quick update - Doug is going to be starting a new drug tomorrow in the hopes that it will control the GVHD and help to start to repair all of the damage he has had in his gut and small intestine.  Although his liver responded well to the steroids, his gut did not and appears to be steroid refractory.  

If the new drug works it will take 5-10 days before we see any improvement.  If the drug does not work, they will have to move on to another agent.  He has had a rough week with the GVHD.  All that was good over the weekend went south on Monday when he started having blood presenting alongside his GI issues.  The smarty pants intern tried to tell him it was from the sips of liquid he was having over the weekend.  His wise old doctor, said not a chance and told Doug he can continue to have some very small sips of liquid as long as he keeps it in check.


We have a guest blogger this week.  Doug's college room mate, Jimmy, made a long trek to Boston from Syracuse, NY to pay Doug a visit.  Jim definitely helped to life his spirits and it was great for Doug to have a fresh mug to look at.  He has been very reserved about having visitors due to his GI issues, but most of it is nothing Jimmy hasn't seen before.


I had the good fortune to spend Saturday night and Sunday morning visiting with Doug and his family in Boston. Like many of you, I have anxiously awaited and so much appreciated the updates via this blog. I hope here to contribute another perspective and to share some of my experience for those who cannot be with Doug right now.

Doug and I were college roommates, so it felt oddly nostalgic to be with him in a small institutionalized room with sparse furniture and tiled floor. And, to be frank, there was one time or two back then that I witnessed him in severe gastrointestinal distress, but it never lasted for a month like this horrendous bout. Physically, Doug is in pretty rough condition, but I was there amidst a few positive developments. As Missy mentioned in her Monday blog post, he has had a couple consecutive good days in terms of nausea and vomiting. Also, he is now allowed to sip some liquids, as opposed to just wetting his mouth and spitting or suctioning it out. He will have to wait for the fruit concoction described in his interview, but this was a milestone nonetheless, especially since his first sips did not have negative repercussions.

Mentally, Doug is Doug, which was awesome and heartening to witness. His speech was a little slowed, and he occasionally drifted asleep and carried our conversation into his dreams, some of which excruciatingly involved the franchise Edible Arrangements. But he was otherwise lucid, intense, and full of conviction as we talked about plans for the future - everything from a canoe camping trip to trying to take as good of care of his family as they are taking of him. And as if there was any doubt from the blog posts, his sense of humor remains indomitable. When he was telling me about the letter from his donor, he took advantage of my gullibility by claiming that the donor was named Matt, and was from Chester, CT. As I mentally connected the dots suggesting that, no way!, could it be one of our old high school friends?!, he admitted he was pulling my leg.

As I drove out of Boston I felt sadness for the suffering that my friend and his family are enduring. But that was eclipsed by the reassurance that Doug is as strong and tough and determined as we all know he is. The veteran of Operation Iraqi Freedom, the man who backpacked the length of Vermont in 18 days, the student who bravely signed on as my roommate - twice! – is confronting the next life challenge with his usual humor, good nature, and grace.

Monday, July 25, 2011

We have Contact...

So the big doctor meeting on Friday did not net a whole lot of anything except for more waiting and watching.  The drug the doctors came up with as a possible second line defense they are not particularly fond of due to Doug's immunocompromised state.  He continues to have no immune system and won't for some time.  This makes one of the biggest risks for him an infection.  In fact, the boys were here this weekend but Brogan coughed a few times over the course of the weekend, so they were unable to go in.  No risking anything.

So for the next few days we'll all sit tight and wait to see if his body and his current course of treatment work together to slowly turn his GVHD of the gut around.

On another note - Doug's donor sent him a letter.  It is not something that happens very often.  In fact the nurses were saying that in many, many years of doing BMT's this is pretty much a rarity.  Below is a copy of the letter word for German-English word:

Dear Genetic Twin,

It's two weeks ago that you got my stem cells and I hope they do their job and help you to recover.  How do you feel?  I was told it will take up to three months before you might get better, get well again.

I'm a 44 years old xxxx, married, we have two kids.  The boy is 8, the girl 6.  Do you have family?

I would be glad to hear from you if you feel well enough to answer, just a short message, how you are doing.

My thoughts are with you and I hope you'll get better soon - and finally well some time.

All the best,
Your genetic twin

Pretty fantastic!

Doug is getting ready for PT right now.  His favorite kind of medical professional!  He has asked several times if he can have a PT as his Primary Doctor since he credits the PT in VT for recognizing there was more going on than a sciatic nerve problem.

He has had a few good days over the weekend and we hope and pray that they continue.  Thanks to everyone for the words of encouragement and posts back on the blog.  He has actually felt good enough to periodically check them over the last few days and he really enjoys the messages. The support is and has been tremendous and we thank you all for staying on this journey with us.

Thursday, July 21, 2011

Interview with Doug

All is holding steady here.  Currently no better and currently no worse.  Everyone needs to see some movement towards better, so tomorrow the team of Dana Farber researchers and big shot Bone Marrow Transplant Docs are getting together to talk all about Doug and figure out next steps to work towards getting him out of here.

Since Doug still can not really focus to write and there is not a tremendous amount of newness to report other than more vomiting and diarrhea, we figured I could interview him.  Please take this lightly...he has just had some Ativan and this is my first ever interview.

m:What has been the best part of your hospital stay?
d: Any day that all of my family is here and I don't feel sick.

m: What has been the worst part of your stay?
d: The past three weeks with all the puking, diarrhea and cramping.  I can't eat or drink and I've got an amazing drink on my mind that doesn't contain alcohol that is driving me crazy to think about and I can't have it.

m: What is in this magic drink?
d: Peaches, mangoes and kiwis mixed with water and ice - ice cold on the rocks.  Then there is a watermelon, blueberry, strawberry combo that I haven't quite focused on as much.

m: What is the funniest thing that has happened to you in the hospital - any stay?
d: Catching the Cleaning Woman in VT outside my room reading a flashcard with the word Vagina on it.  My favorite word since childhood.  She caught me catching her and explained she had to learn anatomy for a medical terminology exam.   Once when I was little my parents let me say penis and vagina over and over again at the dinner table thinking I would lose interest.  It went on for hours and I laughed the whole time.

m:  How old were you then?
d:  It was only 5 years ago.  No really maybe 3 or 4 years old.

m: Have you caught Brogan using that word yet?
d:  Yes, but with a lot more maturity than I do.

m: Any music you have spent a lot of time listening to in here?
d: No....I made a mixed tape so it has been a lot of different songs.  Homeward Bound has been particularly poignant through this.

m: Thoughts on the Red Sox this year?
d: This is the part of the season I do not pay attention to.  They'll either suck, be mediocre or really good and it doesn't matter until the playoffs.

m: What do you like best about the view from your room (his view stinks...)?
d: That the sky is 1/3 open.  The buildings block the rest, but at least I get some.

m: What have you been doing with your days?
d: Oh my god!  A lot of being in bed and pooping and puking, pretty much all mutually exclusive. My goal at night is to make it through on one pair of underwear which means half the time I don't sleep because I am too worried about it.
m: You have a lot of underwear here, so that should not impede your rest.

d: There have been a lot of times in the past week where I have just wanted to stop and end all of it and not fight anymore, but with that I  don't think the pain and suffering would end and would just get worse because I would be separated from my family and friends where they can help me and love me and I can love them back.  So, I look at my boys, and my family and that giant iced peached mango drink that I am going to make and hope that in a few days it will all go away and I'll be able to come home and be with my family and play with my boys while I sip that drink.
d: That's a good blog.

Thursday, July 14, 2011

Day +35

It has been a few weeks since a post.  We are still in Boston and Doug is still at BWH fighting the Germans.  When I last posted Doug just found out he had mild GVHD of the liver.  Quite a bit has and has not happened since then.

The GVHD of the liver is all but resolved.  Doug's liver markers are back to normal and responded nicely to the steroid treatments.  It was not a fast process, but as of today they are officially all in normal range.  Great!  He started IV nutrition again last week as the liver started to show signs of recovery.  He has been attached to his bag of white wonder 23 hours a day since.

While the GVHD of the liver seems controlled, he had a procedure done on the 5th of July to determine why he has been having vicious diarrhea and continued nausea and vomiting.  The results showed more GVHD, but this time of his Gut and this time severe.  The doctors immediately started him on a host of new immunosupressants to once again try and beat down those German cells.  So far, it seems the cells are fighting harder than the drugs.  The doctors said that it could take up to a week to work.  Tomorrow marks a week, so we are hopeful that he starts to get some reprieve.

Another wonderful trait he has had to deal with is cankles.  His weight as of today is 175 lbs. You might remember from the last post it was 163lbs.  While it would be wonderful to think it is due to the white wonder (iv nutrition), in reality his albumin level went AWOL over the last few weeks for a host of reasons I am not going to pretend I understand.  What I do understand is that the low levels are causing fluid retention which is particularly affecting him below the knee.  His legs are once again giving him a workout.

Right now we are in a bit of a wait and watch pattern.   They literally track everything that comes out of him and wait and watch for a pattern of a decrease.  He is getting pretty sick of being sick and all of his energy is being sapped by trying to keep up with his gut.  Over this past week things have not gotten worse, but at the same time he has showed no sign of improvement yet.  We will continue to wait and watch intently.

The kids were in again this weekend for their 3rd or 4th visit.  Doug moved rooms so this was their first time in his new room.  Ethan walked in and immediately went to the bulletin board and said, "where's my lightnin' mcqueen card for daddy?"  Brogan walked in and said , "why are your lips so dry daddy?"  He then turned to me and whispered, "mom, you should really bring daddy some chapstick."  Their concerns about Doug remain the same - "kachow!"