Hi.  This is Jim.  Maureen enjoyed Thanksgiving away from the hospital with some close friends.  On Friday, she was readmitted to the hospital because she was getting weaker.  She  has grown weaker over these past few days.  It appears that her condition has grown worse, and she may have an infection as well as the leukemia getting worse.

As you know, we were hoping for Maureen to start a trial drug this week.  This is on hold.

Maureen has beaten the odds over and over again thanks to your love and support.  At this point the medical team thinks that Maureen could pass away in the next day or so.  We have grown so accustomed to her bouncing back from these things that it seems inconceivable that she will not rally once more.  However, this time is definitely different.

I know that many of you love Maureen very much and want updates on her condition.  I would be grateful if you could rely on the blog for information. It will be very difficult and time consuming for me to respond to texts and calls from everyone who cares so much for Maureen.  I will do my  best to use this as a way to keep everyone informed.

I also know that some of you may want to come.  Maureen is currently in the hospital in Boston.  But, the closest hotel to our home is the Holiday Inn Express in Lawrence, MA.  There are also hotels in Andover, MA.

Update 11/19 - 11-20

Family Fun:
Kate was with us this was week.  We had a lovely time and she was tremendously helpful  (this was a high care week for me; one of those weeks where I was too weak to do much for myself and she, along with my nurses kept me going.  I  think she and Emma/Jim had fun as well.

Medical Updates:
I was entered into the Phase 1 clinical trial which begins early next week.  Wonderful news!!! The combination of drugs (Revlimid and Velcade) in the trial is specifically designed for patients like me with Acute Myeloid leukemia that relapsed within a year of stem cell transplant. 

In terms of the drugs themselves

• Revlimid is a drug that alters the immune system and it may also interfere with the development of tiny blood vessels that help support tumor growth.  Therefore it may reduce or prevent the growth of cancer cells. 
• Velcade is a drug that helps offset the possible negative side effects of Revlimid.  Horrible oversimplification but the best I can do as I continue to wrap my arms around the power of this potentially curative trial.

Now as to timing with an eye to Thanksgiving around the corner...we are very hopeful the trial begins early enough to get me home for Thanksgiving.  In the early days they want me in the hospital for observation as I take the Revlimid pill on day 1 and the Velcade shot on day 2.  Good chance I will be home for Thanksgiving but I won't know until Monday or Tuesday

Going forward the plan is for me to do the trial as an outpatient driving in and out on the required days.  However the first few days have me in the hospital as an inpatient. 

Thanks for checking in and I'll sprinkle in more details as the trial moves forward.

Love, Maureen

Update 11/12 - 11/13

Family Fun:  Several visitors this week helped the time pass quickly in the hospital.  I may head home next week before starting new treatments. 

Medical Update;  the down and dirty:  I am moving to the  next phase of treatment which involves an immune boosting drug and a drug to offset the potentially dangerous side effects of the immune boosting drug.  The cycles last 21 days of actively taking the drugs followed by a rest period.  I will be evaluated constantly to make sure I am not having negative reactions.

Medical Update; the details:  For the last several weeks I've been talking about a clinical trial as the next course of treatment.  I've been waiting to be approved with the approval contingent upon

• improved heart function,
• a certain number of days post chemo,
• my blood counts in a certain place (Platelets not too low; white counts not too high....)
• and some other criteria. 

My improved heart function is referring to my ejection fraction or the measurement of the percentage of blood leaving my heart each time it contracts.  It was 20% in a recent ultrasound due to the assault from all the chemos  over the last 2 years.  A couple dahys ago it was just above 40% - still low but acceptable for the trial. 

The increasing white counts were the scariest number for me.  Generally after chemo the white counts bottom out taking the blast count or leukemia count in my blood down with them.  That did not happen with these last two rounds of chemo.  Instead I've been battling an increasing white blood count along with increased leukemia activity since the last two chemo rounds.  Fortunately we found a medication called Hydrea that temporarily suppresses both my white blood count and leukemia count. 

So with an improved heart function and less leukemia in my blood stream I got the go ahead for the trial. All good stuff.

Thanks for checking in.

Love Maureen

Weekend - 11/6 -11/5

Family Fun:  Kate arrived on Sunday 10/30.  We had a lovely dinner and chance to kick off a week of catching up.  Emma went trick or treating using the devil ears and tail her Aunt Mary Anne sent (to me!)  She had a great time with her long time Halloween posse.  Joe started Winter track and we hope to see him both at Bowdoin and some local meets here in Boston.  He continues to wait for word on his Tae Kwon Do/MMA club.  Enthusiasm is high; just waiting on insurance sign  off.  Finally we enjoyed a wonderful visit from Rich and Ann (Jim's brother and sister in law).  After such a tough, uncertain week it was so amazing to have Kate here every day providing love and support topped off by the wonderful conversation and love from Rich and Ann.  My cousin Margein joined us earlier in the week and she and Kate went out to dinned while I had an MRI on my back, leg and liver.  Looking forward to seeing Glen and Kirsten on Sunday - along with Jim and Emma tomorrow!

Medical Update:  I am back in the hospital as of Halloween.  We are trying to position me for the next round of treatment.  One metric is having the disease under control (i.e. not growing)  Sadly my disease has not been very cooperative.  My white counts were rising after this last round of chemo (they are supposed to drop after the chemo then stay in a low range for a couple weeks).  Along with the white counts rising my leukemia blasts were rising unabated.  Not a good spot for me.  However through medications and divine inspiration (your thoughts and prayers) both the white cells and leukemia cells dropped today.  We hope this is the beginning of a pattern that gets me to the next round of treatment.  At the minimum it is a good day and I thank those I love for reminding me of this.

Oh and I have a slipped disk - my doctor says everyone over 50 has a slipped disk (Ha Ha) but, um ouch.  Hopefully pain which kind of lives in my back and runs up and down my left leg will go away soon .  Also have water in my lungs (not pneumonia) but medication is helping that drain away so should be non-issue soon.

So that's it - thanks so much for checking in

Love Moe

Weekend Update 10/29 - 10/30

Family Fun:  I can't quite remember what I've put in previous blogs so briefly here is what's been going on.  Jim went to Family Weekend at Bowdoin and he and Joseph had a great time.  They had a nice Thai dinner on Friday.  Saturday they attended a lecture on Sir Thomas Moore and went to a couple Bowdon museums.  They both enjoyed their time together and I am so glad it worked out.  Gina (Jims sister) came back for a second visit and her first job was to bring me home from the hospital (Monday 10/24).  We had a great week and Emma was happily spoiled.  Emma had her last Volleyball game on Friday and the team played so well.  Until Friday I hadn't seen her team play and play they did.  Another sin for the girls Junior Varsity!!  Jim's friend Bob and wife Joan are here this weekend.  We had a lovely dinner last night and today Jim took them on a tour of the North Shore of Mass.  Kate arrived this morning and has been busy pulling the hose together while also being wonderful company. 

Medical Update:  I came home Monday after a 10 day course of chemo.  Being home this week has been wonderful.  I'm hoping it can extend a bit butt anticipate going in within the next 1 - 2 weeks for more treatments.  My liver function numbers are high but fortunately coming down - this could be a reaction to a new drug.  Some of my other lab values are off and if they continue to trend in a bad direction I could go back into the hospital sooner rather that later.  For now I am home, getting my treatments as an outpatient and live is pretty good. 

Thanks for checking in

Love,  Maureen

Weekend Update 10/22 - 10/23

Family Fun:  Good Sunday morning.  This week I am told we've gone from 80 to 50 degrees in the course of a couple days.  Brrr - who knows what the day holds today.  Jim and Emma are coming in today (Sunday).  We've  been going to a Catholic Mass in a small chapel on the West campus which is about a 15 minute wheelchair ride.   Today may be tough with the wind and chill but we'll see.  Jim saw Joseph this weekend for 'family weekend' at Bowdoin.  They attended some lectures, went to a couple of museums, and, of course, enjoyed the famous Bowdoin food..  It sounds like they had a great time.  Emma spent the night with her great friend Caitlin after winning a volleyball game on Friday.  Last night was the homecoming dance and I await a report on that - I am thinking it will go something like this "it was fine".  While I've mostly been resting this week, I have enjoyed several visitors including some good friends from the north shore earlier this week and some close friends from North Andover yesterday (who brought a chocolate cake!  what a glorious idea).  And my Aunt Debbie and cousin in law Jane brought lunch earlier this week.  All good stuff

Medical Update:  I was readmitted last Friday after a brief stay at home.  I've had several rounds of chemo over the last 3 months most lasting 5 days with 21 days or so of recovery before the next regimen.  The plan has been to do the recovery at home but I always seem to run into complications - a drug reaction, infection, mouth sores, just general pain in the ass chemo stuff though some complications gotten pretty bad.  Anyway, this last stay has been completely uneventful.   I came in Friday Oct 14 and started a 7 day course of chemo on Saturday (2 different types of chemo).   The chemo ends Monday and, barring any complications, I will be heading home tomorrow.  We continue to look to a immune therapy clinical trial as the next step. I hope to get more details on this next week.

Thanks for checking in - thanks for all your love, meals and prayers.  We are blessed to have support on so many levels.  Looking forward to another visit from Jim's sister Gina followed by my sister Kate. 

Love, Moe

Update 10/16

I know it has been awhile since the  last update.  Thanks for your patience. 

Family Fun
We had two amazing overnight visitors this past month mto keep things together while I was in the hospital and Jim was traveling on business for a couple of days.  Thank you John (my brother) and Gina (Jim'sister).   Your company was great and I cannot believe all you did;  John helping with outside projects like getting deck furniture put away.  Gina - there is not a dirty towel, shirt, or sheet in the house.   Plus all the food you made was amazing. 

Both kids are good - Joe was here for Columbus Day weekend which was also his birthday weekend.  Emma is keeping busy with school, friends and volleyball

Medical Update
I've been in and out of the hospital these last several weeks.  I am back in the hospital now. Currently getting chemo on a regular basis with the last two regimens as an inpatient.  The most recent round of chemo began Saturday 10/15.  We are adding a second round of chemo as the leukemia is pretty active.  Ultimately we are still working toward getting me into a clinical trial and we are hopeful that will happen after this round of chemo (there would be a waiting period before the trial).

Physically my appetite is good and I am getting around just fine.   I am tired to my bones and the Doctors say this happens when the leukemia gets active.  However I am doing exercises in the hospital, keeping my head in a good fighting place and thanking God every day I have the strength to keep up this fight.  Will be nice when I am not so exhausted but I need to be patient.  Please continue to call, write and text and accept my apologies if it takes me awhile to get back to you. 

Thanks for checking in - love and miss you all

Maureen