This is Jim again.  Maureen continues to sleep peacefully.  Joe and Emma are with me at the hospital this evening.

Today Father Chris, the priest at BIDMC, gave Maureen the sacrament of Last Rites.  Those in attendance included me, Joe, Emma, Kay, my sister Lorie, Kay's sister Debbie, Maureen's cousin Joe, his wife Jane and their daughter Caroline, our neighbors Karen and Megan Collins, and our good friend Zoltan Poleretzky.  Father Chris came to know our family very well over these past two years.  In addition to bringing the sacraments to the room, he said mass every Sunday at the Chapel, which Maureen attended when she was well enough and weather permitted (the Chapel is in the West Campus - which requires going outside to get to).  So, it was a great blessing to have him with us today.

Later this afternoon my brother Tom and Maureen's sister Kate arrived.  Kate and Kay are sleeping at Maureen's cousin Mark's apartment this evening.  Mark came by in the evening to visit with us and pick up Kate and Kay.

Joseph and Emma have held up very well.  I am so very proud of how they have handled this and I know that Maureen has left me a wonderful gift in the two of them. 

Thank you again for all of the love and prayers.

Jim

Maureen slept through the night.  Kay and I stayed in the room while Joe and Emma slept in the family room that is located near the unit.  The focus has been on keeping Maureen comfortable.  Today, Sam will be Maureen's nurse.  Sam was the nurse who cared for Maureen the night we checked her into BIDMC on December 16, 2014.

You may be wondering, "Who has been caring for Guinness?"  Yesterday both our neighbor Scott Collins and our dear friend Zoltan Poleretzky dropped in on Guinness - sometimes in sequence!  I'm sure that Guinness loved all of the attention.  Today, Zoltan will be dropping in on him.

My sister Lorie will be arriving from Virginia today, and later this afternoon, Maureen's sister Kate will arrive.

Thank you again for your prayers and support.

Jim

An update on  Maureen.

Maureen has been sleeping the entire day.  During the brief periods when she was awake, she was not fully aware.  The medical team has been working to keep her comfortable.  It is likely that things will develop quickly.  As a result, Joe, Emma and I will spend another night at hotel BIDMC.  Last night I slept in the bed adjacent to Maureen's and Joe and Emma slept in the family room near the elevators.

Today Maureen was surrounded by people who love her.  Joe, Emma and I were joined by Megan Collins (Joe's friend from when he wore diapers) and Megan's mom Karen.  Maureen's mother Kay flew in from Ohio and is here with us.  My friend Jim Monaghan and his wife Denise also joined us.  Our dear friends from Saint Michael's church Ann Marie Guggenberger, Marie Panos, and Amy Turk paid Maureen a visit as well.

We are grateful to all of our friends who are helping out at home - keeping an eye on Guinness as well as other things.

Thank you for your prayers and support.

Jim

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