Update August 28

Family Fun:  Big weekends here.

8/12 Jim's sister Gina and brother-in-law George came up this weekend for a visit.  They arrived yesterday and we had a cookout. It was a blast to catch up. Emma did an evening 5k run with glow in the dark stuff thrown at her.  The kids went on the boat with Jim, their aunt and uncle.  Gina and George left and my mom and Kate arrived.

8/19 Emma again went on a boat trip with Jim and some pals.  We also had a goodbye party for Joseph.   He went off to school on 8/25.  Emma and Joe have spent a lot of time together shopping and going to the beach.  Emma, Grandma and Kate even took me out for a day at shopping at target.

Medical Update: Sunday (Aug 28) Over the last several weeks Maureen had continuing weakness.  On Monday, Maureen was admitted to the hospital unable to walk or dance under her own power.  She had not been able to keep down any food or drink before this for days.  They discovered a toxic reaction to one of her antibiotics,  Once she stopped taking it things started recovering rapidly.  The first 3 days in the hospital were a nightmare but I am now feeling much better and beginning to take steps on my own with the help of two nurses.  A ways to go to but no more lightheaded or dizziness.  Mostly severe lack of strength and fatigue.  No worries we'll get back.  Started next round of chemo on Thursday.  No ETA yet for discharge.

In other news...on Sunday 8/21 at 330 am Maureen fell over her walker and her head grazed the corner of a chest.  We went to the emergency room and they found no internal damage so home we went. The same day at 330 pm my Mom was bringing me to a clinic visit.  She tripped and fell while getting me a wheelchair and banged up her face pretty good.  She too went to the emergency room and got two stitches for her trouble but also no internal injuries.  She was able to go home that night and is doing great.

So Joe is at school, Emma starts just after labor day (oh and also made the JV Volleyball team!!). Kate went home after a week stay, and grandma spend 5 hours in the emergency room but has been home in north andover beyond that.   WOW

Thanks for checking in

Love Maureen

Update August 8th

Family Fun:  Emma is home!!  Her return was preceded by a letter with a list of activities she wants to knock out before school starts.  Good stuff like beach days, dinner at a favorite restaurant, bonfire - don;t think cleaning out the trunk from camp made it to the list but this is only day 1.  Joseph is counting the days until he returns to Bowdoin.  Master Shin (who runs the Tae Kwon Do studio where Joseph works) is planning a nice goodbye party for my big guy.  Jim and the kids enjoyed  beautiful day on the boat this past Sunday.  Hope to be joining them on an upcoming trip soon.  Jim's sister Gina and husband George will be here this weekend.  My Mom and Kate get her late Sunday afternoon for an extended visit.

Medical Update:  Good week on the medical front.  Heading into the clinic regularly still as this is the point post-chemo where my counts drop.  (you may know from previous posts - low platelets, low red blood that I need replenished).  Not sure how long this will last -  will update all on next treatment possibilities as they present themselves.

Thanks for checking in!!

Love Moe

Update August 1st

Family Fun:  We've received a few letters from Emma and she is having a great time at camp.  I don't know how she will be able to fit in all the activities.  Of course we miss her terribly and cannot wait to see her this coming Saturday.  Joseph continues to squeeze every bit of fun out of the summer while being really helpful to me.  He goes back on the 25th and we will really miss him.  Jim, Joseph and I spent the weekend with my best friend Lisa and her husband Charlie.  It was wonderful!  For the first time in months I was able to get out (thanks to SVDP and my friend Michelle for the temporary loaning of a transport wheelchair) on a real outing.  Lisa and I drove up to Gloucester, MA for lunch meeting Jim and Charlie there who arrived by boat.  We poked around a beautiful art studio then Lisa and I took a tour of the coast.  A great day!  Thank you Lisa and Charlie for a beautiful visit

Medical Update:  First of all thank you to everyone who brought me to and from the clinic.  Truly without your help I would be in the hospital getting the treatment.  Not only is the physical healing happening faster at home it is great for the soul to see the kids everyday and sleep in my bed every night.  Finished the first week of chemo on Friday.  Everything went well.  I am having some side effects which are common to the chemo I am receiving (fatigue, some stomach trouble).  My blood counts are dropping which will mean more clinic visits (probably every 2 days) for infusions.  The plan is to see how my leukemia responds to the chemo and then chart out future plans for treatment.

Thanks for checking in.

Love, Maureen

July 26th Chemo Update

Chemo Day one is behind us.  Yesterday was a marathon day in the clinic - arrived around 10:30 and left at 6.  Yikes!  Fortunately my friend Karen from North Andover was with me along with a surprise guest my long lost friend from work days Lisa.  They were hilarious and wonderful company.

The day stretched out for a number of reasons...wrong labs pulled, the Dr Avigan factor (he takes his time before I do anything big), the need for an EKG, some numbers they did not like causing them to redraw blood work 3 times.  In the end all good and we started the chemo which will go through Friday.

The goal of this chemo is to keep the leukemia in my blood at its new found we-never-thought-we-would-be-here-again state of 0%.  Once I get through the recovery of this round of chemo (typically a month) we'll revisit our treatment options.  This chemo called Dacogen is one I tolerate pretty well so hopefully won't have too many issues with loss of appetite and upset stomach.

Also continuing to feel a bit better each day and my vitals reflect a much stronger blood pressure and better heart rate.

Coming Up

• Should be a pretty straight forward week of chemo every day until Friday.
• Will get the chemo every day and will also get fluids as needed to help with hydration and blood products such as platelets and red blood as needed.
• With my multiple blood transfusions I am at risk of too much iron in my system.  This iron overload can damage parts of my body including the liver and the heart.  There are therapies to combat and the team is also weighing the need for any transfusion with this risk.
• Occasionally my electrolyte numbers and/or levels of one of my medications in my system will be 'off' (either too high or too low).  These have all been corrected with adjustments to my medications.
• With the multiple IVs and blood draws I get every week my team continues to look at a more permanent option for access for blood draws and infusions.  Many options are not available to me right now (such as a port or central line) because they are too invasive and offer a nice place for my bacteria to colonize and turn into an infection (that's happened before with my weakened immune system).  One compromise option is a midline which allows access but is less invasive.  Probably more than you ever needed to know...

 Back to the clinic shortly

Thanks for checking in!

Love Maureen

Weekend Update July 22

Happy Birthday Johnnie Redmond!!

Family Fun  Emma wraps up rowing today (weather cooperating with no lighting) and leaves for a two week YMCA overnight camp tomorrow.  She went last year and had an absolute blast.  Some of her close buds are going and she is also looking forward to meeting people who come from all over the world.  Joe continues to work 6 days a week but is still able to sneak in some beach time and lots of friend time.  Along with Jim the kids and I have had a blast watching and tearing apart Americas Got Talent (not to mention the Republican National Convention :)

Health Update The last few months have been particularly challenging.  But as I constantly remind myself every day is a gift.  Here is a quick synopsis...

Disease Status  My leukemia recurred again a couple months ago. Since then I've been really struggling.  Two months ago the % of leukemia in my white blood cells was as high as 70%.  Yesterday's labs revealed there is currently no leukemia in my blood.  Now this lack of leukemia in my blood stream is a moment in time and could change at any time.  However for me to have 0% leukemia in my blood is nothing short of a miracle.  

Infections/Bacteria.  Over the last couple months I've had two pretty bad infections that required hospitalization. Fortunately the infections have been successfully treated with antibiotics and at this point are no longer active. If the infections come back I could be in big trouble.  Every couple of days cultures are taken of my blood to see if the bacteria grows into an infection in a petri dish - since starting the antibiotics the bacteria has not grown back into infections.   

Physical Strength  Currently my heart is not functioning at full tilt (due to the chemo), I am dehydrated and weak from deconditioning.  My heart races when I stand/walk resulting in my being able to walk short distances around the hospital or home (wherever I happen to be).  I am only going to the clinic in terms of outings and using a wheelchair to get around.  Fortunately I am literally getting better every day - for example today I am walking about double the distance as yesterday without needing to sit down. Also my  appetite is much improved

Prognosis and Next Steps:  I will most likely be getting chemo again next week to try and keep the leukemia out of my bloodstream.  Once we see how I am doing we will determine if I continue to get chemo every 6 weeks or so, enter a clinical trial, look at another transplant or something else.  All of these treatment options have pros/cons and, at Dr Avigan's suggestion, we are waiting until after the chemo treatment to see what our best course of treatment is and have a deeper discussion of the pros and cons of each option.  

One day at a time and today/yesterday is a very good day!

Thanks for checking in

Love Maureen

July 20

So sorry for the delay in posting.  Basically been in the hospital more than out these last 6 weeks.  Very weak right now and trying to get back to some degree of strength - even walking around the house wipes me out and I am currently using a wheelchair for clinic visits

God bless all of you who continue to take me to the clinic, bring me meals, send your prayers and love and continue to think of me.

We are hoping for continued improvement and for some more options in the treatment of this GD persistant leukemia

Love
Maureen

Weekend Update Sunday June 26th

Fun Stuff:  It was kind of a quiet week for the kids.  Joseph worked and was very helpful driving Emma to her last week of rowing.  Saturday was spectacularly beautiful here and the kids and Jim went on the boat. Some of Joseph's friends joined and had a great time tubing.  In the afternoon my family headed to some of our close friends for an HS graduation celebration.  What a perfect day to be outside.  Here at Beth Israel my good friend Colleen kept me company for awhile Saturday which was awesome.  Sunday  Emma Joseph and Jim came to see me at Beth Israel.  Julie our wonderful nurse took us to Mass. We then had a nice little lunch at a sidewalk cafe on the way back to the hospital.

Medical Update. No treatments until I am past this infection  They want me to be as strong as possible.  Plus an infection could compromise any likelihood of success with the treatment. Will post something as treatment decisions evolve.

Thanks for checking in

Love Maureen