Weekend Update April 23

What a week!  This was school vacation week for Emma and she had a great time with friends.  This past Monday she watched the Boston Marathon.  What a quintessential way to see Boston at its finest - the weather cooperated as well.  Joseph continues to have a good semester at Bowdoin.  He is having a strong outdoor track season setting personal bests in both high jump and hurdles over the last couple weeks.  However he is REALLY missed in North Andover and it will be great when he gets home in late May.

Medical Update:    This week has set a new record for roller coaster events.  I was discharged from the hospital on Tuesday (yeah!!) only to be readmitted Friday (crap).  In a clinic visit on Thursday they took blood cultures and found I had bacteria in my blood.  We were hopeful it was a contaminated sample but  it turned out to be accurate.  So I am back in the hospital beginning another course of antibiotics.  The plan is for me to get the initial course of antibiotics here for several days (?? on the number) and then transition home where I will continue giving myself IV antibiotics.  I believe I will be on the medications for a total of 6 weeks.  Needless to say this was a pretty big blow.  After being in the hospital for a month (plus the 3 weeks or so just before that month) and then home for only 2 1/2 days only to go back into the hospital was incredibly discouraging.  Yet I've been in worse places during this journey.  And I have the support and council of Jim, my Mom, Kate, John, all of you - reminding me we've gotten through worse and reminding me of what I can do to get stronger.  Tomorrow Jim, Emma and I will go to mass which has become our habit for the last several Sundays.  I get all bundled up in a wheelchair and we parade to the part of Beth Israel Deaconess where there is a lovely chapel where Father Chris offers Mass each Sunday at noon.

Will try and be more diligent with my updates.

Thank for checking in - Love, Maureen

Weekend Update April 15

Had a wonderful week with calls and visits from friends - most recently Marie and Amy from North Andover made the trip south to spend some Quality time with me at Beth Israel.   Between the conversations and the huge bag of M & Ms I was in heaven!!  Also a special thanks to my cousins Mark and Karen who hosted my Mom for the week she was here to see me - they live 3 blocks from the hospital and it was wonderful to have her so close for the week.

Medical Updates - here are some highlights - all good news WOW

• I have not needed blood or platelet infusions for about 10 days.  This tells us my marrow is producing sufficient quantity of these blood products such that I do not need supplemental infusions - great news.
• I am officially not neutropenic meaning I am as ready/healthy as anyone else to take on infections that may come my way.   This is another key milestone in the recovery of my marrow which went from producing leukemia cells (before the last chemo), to producing no cells at all (after the last chemo) to enough healthy white blood cells (think disease fighting cells) to allow the doctors to begin talking about discharge from the hospital.
• I have been on three antibiotics for the past month plus.   If all continues on track I will be off all three by Monday of next week.
• Once I am off the antibiotics and there is no lingering sign of one of the blood infections that brought me in here, I can get a new port or central line (a way of getting blood drawn and products delivered such as platelets).  This can be done as an in patient or out patient.  A new port will give me more stability for blood draws and infusions
• I had a bone marrow biopsy with very encouraging initial results - no leukemia in my blood stream and no leukemia apparent in my marrow.  There is a genetic mutation called FLT3 and we have to wait another week or so to know if that is present.
• Next steps for treatment - it all depends on the final marrow analysis and the status of the FLT3.  I may get another boost of donor cells, possibly another round of Vorinistat (a chemo/immune accelerate pill) or no active treatment but continued monitoring and infusion as needed.  No matter what it looks very likely I will be released next week which would be tremendous.  Poor Guinness won't know what to do with himself!

Thanks for checking in and what a beautiful place I am in - feeling strong and rested.  Many thanks for your love and prayers.  I hope to be able to give back in the same measure you've all given to me.

Love, Maureen

Tuesday 4/12/16 - pardon the redundancy but this helps me keep my thoughts somewhat straight

The Fun Stuff
Joseph was home for Spring break this past March for 2 whole weeks.  He arrived home on Friday March 11 and went back on Easter Sunday March 27.   Emma and her friends are off to a great start in their volleyball season - for both kids summer is just around the corner and Emma is particular is looking forward to her many graduation activities.  Grandma has been here a couple of times and there has been no shortage of meals, prayers, cards and friends to remind us of how fortunate we are.

The bottom line
I am currently in the second of 2 hospitalizations since late February (about a month and a half with a brief break between the two hospitalizations).  We will probably talk about my going home the week of 4/18. During the first hospitalization I had toxic chemo which dropped my blood counts by design emptying my marrow so we could start all over again with rebuilding a healthy immune system.  My counts are finally recovering and so far my new immune system is coming in strong.  I expect the results of a recent bone marrow biopsy to come in by Friday and that will dictate our next course of treatment.

So here has been our crazy month +
This has been a difficult couple of months with 2 hospitalizations, one round of toxic chemo that really knocked me out, a stay in the ICU, multiple x rays, echochadiograms and a CAT scan, losing my port and IV necessitating multiple 'sticks' to both draw blood  and infusions for a period of time plus a nasty rash (again) necessitating a skin biopsy to see what is going on.  Yet here I am with my counts recovering, currently responding very well to the chemo and again back to a place of strength and hope.  We had a field trip to attend Sunday Mass and I am blessed with multiple visits from family/friends

At a glance
Feb
2/25 Moe admitted to hospital for next round of chemo

March
3/9 Mom arrives for a visit
3/11 Moe Discharged from hospital and Mom picks up Joe from Bowdoin for the beginning of his 2 week Sp Break
3/15 Mom Returns Home to Cleveland
3/18 Joe, his best pal Megan, Emma and some of her friends go to 2015 Mr North Andover pageant (Joe/Megan won in 2015 and passed the crown to this year's 2016 winners)
3/20 Sunday (Palm Sunday) Maureen re-admitted to hospital with fever and low blood pressure

April
4/3 Maureen goes to ICU with dangerously low blood pressure - back to regular floor the following day
4/6 Mom comes for a second visit
4/12 Mom returns home
4/11 Maureen's blood count numbers begin to rise and we are encouraged by how she is responding to chemo.  Plus Happy Birthday Kate!!

Upcoming Events
Maureen had a bone marrow biopsy on 4/12 - the results will determine next steps in treatment including when/if she will have another cell infusion from her original donor and/or another round of chemo in pill form. She remains on antibiotics for infections and pnemonia both of which are in the process of healing.  She is in the hospital for the forseeable future though we may start discussing discharge plans as soon as the week of 4/18.

Thanks for checking in and slogging through this update!

Love Maureen

Monday 4/11/2016

The Fun Stuff...My Mom made a trip from Ohio and is here through April 12 staying with my cousin Mark and his wife Karen as I continue to recover in the hospital (yep,back in the hospital).  Jim, Emma, my Mom and I were joined by my nurse Julie on Sunday April 10 for a lovely mass here on the campus of Beth Israel Deaconess.  My family was joined by Aunt Debbie (Mom's sister) in the afternoon for a pizza party.  Throughout the last several weeks I've been in the hospital more than home and very grateful for your visits, cards, prayers and meals for Jim/Emma.  Not sure when I'll be discharged home this time around.  Waiting for a good showing of healthy cell growth in the marrow which has just started.

Medical Summary:  An interesting couple of weeks and apologies for the delay in the blog update.  On balance good news but it took 2 hospital admissions, one trip to the ICU, a late night visit for a CAT scan and another 5 day course of chemo to get here.  Bottom line...I had another round of chemo starting March 4th and am just now starting to recover with a growing immune system showing signs of good health.  Some other things thrown in for good measure some of which was a bit scary - read on if you are so inclined

Details:  .

2/25/16 - 3/11/2016 Admitted to Hospital with fevers and dehydration; received antibiotics and fluids.  Began a new but previously scheduled chemo regimen during this hospital stay.  The chemo was 3 types given over a 5 day cycle commonly referred to as MEC (the acronym for the chemo drug names). In hospital for a little over 2 weeks.

3/11/2016 - 3/20/2016 Discharged and home approx 9 days

3/20/16 - Present readmitted to hospital on Sunday 3/20.  Still in the hospital approx 3 weeks later and not sure when I'll be discharged.  Since being readmitted my Mom arrived and has been here for a week (4/6 - 4/12).  While it has been a wonderful visit with my Mom, it has not been without it's challenges.  Prior to my Mom arriving I made a trip to the ICU which was a bit scary - very low blood pressure they did not feel they could control on my normal hospital floor.  Also made a trip for a late night CAT scan as I started talking crazy talk (how they could differentiate Moe speak from crazy talk l will probably  never know :)

Now for the good news - I am showing signs of recovery from the chemo - basically the chemo wipes out my marrow in the hopes that the marrow regenerates and starts producing a whole new healthy immune system/healthy blood cells.  This is exactly what has happened with my neutrophils (disease fighting white blood cells) going up!   While I remain neutropenic (still  not able to fully fight infections on my own as my white blood cells grow) I am getting stronger every day.

That's it for now - thanks for checking in.
Love, Maureen

Weekend Update Sunday 3/27

Happy Easter!!  I hope you all enjoyed time with family and friends.  Jim, Joseph and Emma were here at the hospital and we had a great morning. They spent the afternoon with friends having Easter dinner then Jim took Joe back to Bowdoin.  Joe had a relaxing break and is ready to take his recharged self back to school.

Medical Update:  About 19 days ago I completed a 5 day course of  MEC infusion chemo.  The goal was to wipe out the marrow in the hopes it regenerates itself with healthy blood cell production (and no more leukemia).  According to a bone marrow biopsy last week, part one is accomplished in that my marrow is completely empty.  This week I will start on a new chemo/immune accelerate pill as a complementary strategy to keep the leukemia at bay.

In approx 2 - 3 weeks I will have another bone marrow biopsy to see if my marrow is producing healthy cells AND to see if those cells are from me, my donor, or some combination.

All of this will determine the next course of action; most likely a donor cell infusion (more healthy white cells) along with some additional treatments.

I don't foresee the above changing but one never knows!  Will keep you posted as the week goes on.

Thanks for checking in.

Love, Maureen

Wednesday March 23

We had some true Spring weather these past several days with Joe home for Spring break (though he was removing snow from the roof this past Monday!)  He's been busy with work (the Tae Kwon Do kids he teaches are thrilled to have him back for a couple weeks), spending time with friends both from North Andover and Boston as he visits his Bowdoin friends at their parents homes and getting some quality time with us - it is especially gratifying to see Emma and he getting so much fun time together.  Jim is again keeping it all together as I find myself back in the hospital as of Sunday March 20.

Medical Update: After being home for 9 wonderful days, I was readmitted to the hospital on Sunday March 20th with a slight fever.  I am 17 days out from my last round of chemo and this is when my blood counts are at their lowest.  The MEC Chemo is designed to wipe my marrow clean of all cells/cell production.  The thinking, the hope, is my marrow starts from scratch producing ONLY healthy cells.  Before this happens the marrow hits something called nadir where it is producing nothing at all.  I am at that period now so I essentially have no white cells to help fight an infection.   Thus a fever right now is very dangerous.

Also still experiencing those mouth sores and they were particularly painful when I was admitted.  They are doing a fantastic job with pain management and things are getting better - I can eat, swallow and sleep again which makes for a much better quality of life.  Fatigue is better as well though rash has returned with a vengence.  Luckily it is not too uncomfortable.

So I here I sit watching Jimmy Fallon waiting for my midnight vitals and lab draw.  Apparently this must happen at midnight  - logic is beyond me and I am happy when they occasionally sneak the time up to 11. Luckily I adore my nurse (which is always true) and it gives me a good chance to say hello to all of you.

Next steps...I hope to go home within the next week.  We are waiting for my blood counts to go back up and for me to get some disease fighting neutrofils (a type of white blood cell).  I had a bone marrow biopsy today and that will help determine next steps in treatment.  Also, despite all of the above we now have an opportunity with the latest round of chemo to get on a better track of treatment continually working toward remission.  Amazing with all that has happened I continue to be graced with potentially curative care - again I am keeping the faith until otherwise notified.

That's it - turning in for some zzzz's and will update soon.  Blame the latest delay on the appeal of my pillow.

Thanks for checking in.

Love Moe

Tuesday March 15

How great it was to have  my mom in town this last week. Jim just took her into the airport and I am already looking forward to her next trip out. Emma started volleyball this week with rowing right around the corner. Joseph has kept busy this first week home.  He'll be coming with me to the clinic tomorrow.

Medical Update. The chemo I received in the hospital did a great job reigning in my leukemia. As expected we are going to supplement that infusion chemo (MEC) with a pill that acts as both a chemo drug and an immune accelerant. I started that pill yesterday. Initially we were going to give me a little more time to recover from the MEC but the doctors find I am tolerating that chemo very well and are comfortable bringing in this pill which I will take  as  an outpatient. Next up will be a bone marrow biopsy to determine the status of my disease. From there likely some type of cell infusion from my original donor. My job now is to eat and drink and stay virus free. My white counts are super low so I am again under restrictions to keep me as strong as possible. One bummer is the persistence of my mouth sores. Currently very painful to eat, drink and even talk. Hopefully the further I get from the MEC chemo the more those will heal.

So very grateful to be  navigating all of this as an outpatient.  Any fever or reaction they don't feel I can manage at home will put me temporarily back in the big house. For now really lucky to be home and showing some good signs of healing.

Thanks for checking in. Love Maureen