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.

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.

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!"

Day +22 and GVHD

Still Missy here.   Today marks day +22 since the SCT.  Good news is those new cells are engrafting and setting up shop in Doug's body.   But, like everything else with this disease, it has not been an easy engraftment process.

Doug is still in the hospital.  He had a really rough day with vomiting on Saturday and then fevers on Sunday, so they put him on watch and wait mode here hoping they could send him home the early part of this past week.  Around that same time he also developed what seemed like a nasty cold.  He was feeling so sick with nausea and violent vomiting that he was eating nothing.  On Monday they did a CT scan of his head to see if the cold had settled in his sinuses and to ensure that with all of his forceful sickness, he had not  burst a blood vessel somewhere in his head.  The CT scan came out clear for that, but did show sinus inflammation.  They started him on IV antibiotics to treat the sinus infection.  By the end of the day Monday a lacy like rash popped up on his body.

While all of this was going on, his liver enzymes had also started to creep up. Each day they were basically doubling until by Thursday they were at 50x greater than the normal range.  On Wednesday, as the numbers were getting quite concerning, the doctors started him on Prednisone (a steroid) to help treat what they thought might be the beginning of graft vs. host disease (GVHD).  They also decided they wanted him to have a trans jugular liver biopsy on Thursday morning which could help them rule out certain things and confirm their course of treatment.  For the biopsy the doctors went in through his jugular vein and threaded their way down to his liver to help themselves to a small sample of it.

They were looking for one of four things in the biopsy, but of the four, the two most likely culprits would be Hepatitis or GVHD.  Doug came into the SCT negative for hepatitis, however we do know his donor did have it present at some point in his body.  Not currently, but at some point which made it possible that Doug could now have it.  I think in a previous post Doug talked about having to sign off on his European donor to acknowledge that Doug could get Mad Cow or Hepatitis from the transplant.  A small price to pay if it beat the leukemia.

At 5pm today we got confirmation that his liver is showing mild signs of GVHD.  The fact that it is mild is good.  However, they did find that he does have some acute liver cell damage that is more than they would typically see with a mild GVHD.  Currently they are not sure why he has this acute damage or what it is from.  It could be in response to a drug or combo of drugs he has had to take in treatment or it could be something viral.  The good news regardless, is that his liver function held stable today and did not climb more.  They are looking at that as a sign that the Prednisone is helping to treat the GVHD and we should expect to see the liver enzymes continue to go down.

All in all the doctors feel confident the rash from earlier in the week, the nausea and vomiting as well as the confirmation of the liver showing GVHD is just that - Graft vs. Host Disease.   To help with a base understanding of what it is, "GVHD is a common complication of allogenic SCT in which functional immune cells in the transplanted marrow recognize the recipient as "foreign" and mount an immunologic attack."  I have to credit Wikipedia with the explanation there.  Basically as engraftment has been occurring, the German is fighting Doug's body since those cells know it is not their normal environment.  It makes me wonder if they are attacking the liver hard as they recognize it is not an Octoberfest and bratwurst laden liver.  Although for those of you who know Doug well, you know he likes good beer, and he used to have a serious penchant for "cheddarwurst" - perhaps one of the most disgusting meat products available.  I think even the Germans would concur.

Right now Doug is sleeping.  He has been sleeping about 20 hours a day although not necessarily restfully.  He has still had nothing to eat since Saturday morning of last week and no IV nutrition due to how taxing it would be to his liver in its current state.  He is extremely weak right now from all he has been through this past week and his weight is down to 163 lbs.  As we all know, he is strong and will fight through all of this.  He has a goal once this is all over to get back into doing triathlons.  He is convinced his leaner frame will at least make the swim easier than his old huge muscular sinking thighs ever did!

Day +14

It is Missy again with a quick update for everyone.  A week has gone by since the last post, and Doug is still not felling great, but things seem to be moving in the right direction.  The symptoms that plagued him last week seemed to get worse over the course of this past week.  He had a rough beginning to this week with every side effect of the chemo and radiation rearing their ugly head.  He had everything from rashes to swelling of the face and quite a few unmentionables occurring as well.  For the most part he has lost what hair he had left, but he does have some super blonde peach fuzz left running down the middle of the top of his head.  The good news is he always wanted a mohawk.

In spite of all of the side effects, his white blood cell count has started to slowly recover and hopefully the donors cells are starting to engraft.  We have had a lot of people ask us how and when we will know if the transplant is working.  At some point shortly after Doug gets discharged, the docs at Dana Farber will run a test called a Chimerism.  This will show us how much of Doug's immune system is his and how much of his immune system is his donors.  The ideal would be to see all donor.

On the side of discharge, we are guessing that at some point toward the end of next week, he will be set free from his 10X12 white wall room.  Today a "care coodinator" stopped by and said she had him down for a Monday discharge.  That seems a bit aggressive given his current state (he is still on IV nutrition, his wbc count is still low although increasing, and he still can not swallow whole pills) however, we have been told as quickly as all of these side effects come on, they can go away.

In re-reading this post, I am hoping Doug is up for the next blog.  I'm good for the cut and dry update, but he is good for the flair.  Kind of like our marriage!!

P.S.  Maryland Mimi - can you e-mail Doug offline so he has your e-mail?  We left it in VT!

Update from the Other Side

Missy here with a quick update for everyone.  All will be thankful this is quick as I am not a fraction of the writer my husband is.  Since the transplant, all has been moving along as to be expected.  It has been an unpleasant week of new challenges, but Doug has amazing strength and will and still finds a way to find a reason to laugh or smile each day.  The few first days post transplant were filled with a lot of fatigue, nausea and vomiting.  The nausea was pretty much keeping him from doing much of anything except watching Sportscenter. His Dana Farber Schwinn has been sitting quietly in the corner of the room this week.

Yesterday morning, I woke up to a text at 4:00 am. saying that the nausea had finally subsided, at least momentarily, but he was now experiencing severe throat pain and sores in his mouth.  Again, par for the course, but horrible nonetheless.  Since yesterday the pain and sores have only worsened to the point where he can not talk, and has he has to regularly suction out his mouth and throat which are basically breaking down.  It is a result of the compound effect of the chemo, radiation and a new drug they give him every few days to help with GVHD.

Tonight they were starting him on IV nutrition and he was going to get a PCA, which is 'Patient Controlled Analgesia', or for those of us only learning all these medical terms, it is basically a pump whereby he can administer his own pain medication.  Not to worry though, it is controlled so he can only have so much every so often.  He has been pretty lopped on the pain meds they are currently giving him through his IV, but his mind is sharp and quick, and he has been communicating as needed through his dry erase board.

His body overall is pretty fragile right now.  The skin on his chest has been literally tearing off with the tape every time he takes a shower and has his ports covered over to keep them dry.  The radiation treatment essentially made his skin like tissue paper.  In spite of all of this he looks pretty good given all that he has been through.

Last weekend the kids were in Boston and were able to go to the hospital to see him.  They had to go through the same routine as anyone else with wearing the mask and gloves.  They had kids sized masks, but they had to wear the adult gloves.  Brogan went in first and as confident as the doctors, walked to the foot of Doug's bed, put his hands down on it and said, "So Dad, how are you doing?" in the most gentle and sincere way.  Ethan came in after Brogan had his visit, his little mask riding up into his eyes and the size small gloves enveloping his arms, and said, "Lighting McQueen says Kachow Daddy!"

Transplant Complete

Last night at 9:10 PM, I was given my third chance at life.  The transfusion took about 30 minutes and I held Missy's hand the whole time.  I felt too crappy and was too tired to cry, but I probably would have if I could.  Everyone said it would be an anti-climatic moment, but I didn't think so.  As a family we have been dealing with this disease and all that comes with it since January.  My family, friends, coworkers and people I don't even know have been praying for me and sending positive thoughts my way throughout.  The raw emotions, heavy thinking, and anxious waiting for results are certainly not over, but last night that stem cell transplant was the lunge of faith for a solid handhold in my climb back to normal life.  We won't know for a couple of weeks how solid that hold is.   So we will go right back to praying, hoping and fighting, but now we are getting somewhere.  If this works I'm cured.  If not, well I guess we start over, but at least we are actively moving forward now.

Today I am still really nauseated, and fatigued, but feeling positive.   The doctors seem to be very satisfied with how everything is going.  As I said we will be watching things very closely over the next couple of weeks to see how well the new stem cells are becoming engrafted in my system, and if there seems to be any resistance.  We will also be watching for any signs of infection.  For my part I'll be trying to force myself to eat and and exercise in some capacity.  But right now I'm going back to sleep.