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

Weekend Update June 24

Fun Stuff:  EiYiYi - I cannot believe it has been two weeks since an update!  thanks for hanging in there and remember you can register your email to get a reminder when the blog is updated (See the top of any page).  John and my Mom arrived Friday June 17 (just after Jim's B-day!!) in time for a family celebration with four families we have been close with since the kids were in preschool.  In fact the kids had their St Michael first communion party together and we thought it only fitting we have their St Michael graduation party together.  John, Jim and some of our friends went out on the boat Saturday leaving Mom, Emma and I to do the last minute touches on the house for the party.  Thank goodness John and my Mom were both there - great company and great help.  The brunch on Sunday was fun and lively with way too much food (never a bad thing).  All the families were exceptionally generous with bringing food and drink helping with every aspect of the party,  They probably would have folded my laundry if I asked.  How am I so blessed with the family and friends God put in my life.

John took me to the clinic Monday and we again talked through my treatment options with Avigan.  My dear friend Karen was with me earlier last week and both John and Karen kept me grounded as I was trying to wrap my head around what lies ahead. 

We all continue to enjoy the summer and I think Jim would love to have all the back to back beautiful days as boat days!!  We've been lucky to get out a few times this year.

Medical Update:  In the never a dull moment department...I am back in the hospital with a gram-negative-rod bacteria (impressive huh?-there is another name but damned if I can think of it).  It may have started from the inside in my gut or from the outside in a puncture in my lower leg (no clue how I got that).  The puncture looks like an insect bite and when dermatology did the skin biopsy at the site they removed a small black something which was suspicious of a bug.  Pathology is biopsing that to see if  it is a tick (hard to tell as a deer tick would be so small and engourged).  They also biopsied actual skin to determine I have that Gram Rod bacteria. 

I am being treated for both the bacteria and the lime disease and am feeling remarkably better since arriving back at Beth Israel Tuesday.  I came in via the emergency room on Tuesday night with high fevers and some GI troubles (we'll leave it at that).  Poor Jim and the kids were trying to keep themselves awake until midnight when we were finally moved to a room.  I was so out of it, Emma told me it took me 20 minutes to think of the word 'purse' - then I could not remember why I needed it.  Both kids were highly amused so even in the emergency room we find some fun.

Hopefully will get definitive results today re: whether I had a tick bite and have lime disease.  Tested negative initially for lime but one can get false negatives in the first two weeks of having lime disease so we'll watch closely.

Mine is a revolving door between the primary team, Infectious Diseases and dermatology.  Plus there is this weird guy who wants me to breath into a mouth piece that leads into a tuperware container of salt water which will apparently motivate my lungs to produce "ka ka" I cough up and the medical team can analyze.  Has not worked so far and when he asked me to repeat the test at midnight I said "um....no".  Moe is temporarily down but she is NOT out.

Truly Amazing that I feel and look pretty good.  I am getting lots of fluids and taking 3 (previously 4) antibiotics to get myself back to fighting shape.  My appetite is not great but I  am now able to keep food and drink down which is great after feeling so disastrously crummy on Tuesday and Wednesday.

Still looking at treatment options for the leukemia.  Dr Avigan submitted my name and some blood tests to those that decide who gets in an immune therepy clinical trial.  I should find out next week.  In the not to distant future is also a transplant from my Saint On Earth Donor.  Will go into more detail in next update. 

Please join me in prayers for the Demeter Family and their dear Mom Muncie who passed away this week and the age of 91.  The Demeters and Redmonds lived at each other's homes swimming in the summer and sledding in the winter and raising happy hell year round.  The best childhood imaginable.  What a legacy Muncie left in her 5 amazing kids (I mean they have it all- charm, intelligence, humor, beauty) and the whole  package of spectacularness made it to the next generation of grandkids.  God bless all of you.

Okay that is it.  I promise to not let so much time pass before the next update.

Thanks for checking in - Love Maureen

Weekend Update Sunday June 12

Family Update:  This was all graduation celebration all  the time week at the Staudt house.  Emma graduated 8th grade along with 51 students from St Michael school in North Andover, MA this past Thursday June 9th.  In addition to the social outings, this past week included an awards day, spirit show and graduation dinner.  At the graduation dinner each student read a letter to their parents.  The letters were beautiful, touching  and quite funny.  Emma's letter was very clever and heart warming.  I only cried once (or twice).  the kids left with a sweatshirt designed by one of the Moms, a Memory Book that was beautifully put together and a DVD with hundreds (thousands?) of photos of the kids and their families.  Every event and gift was lovingly put together and reminds me how lucky we were for Emma's 11 years with St Mikes and the lasting friendships that came from those years.  Jim's sister Mary Anne (husband Pat), brother Tom (wife Susan) and niece Siobhan (husband Nick) joined us over the weekend for a family celebration.  We had a GREAT time and thank them all so  much for making the trip.  What a great way to top off the two weeks of celebration.  Emma was also busy with friends throughout the weekend.  Oh and many of the older siblings of Emma's classmates were in Joseph's class so he had a lot of fun catching up with old St Mike's pals.  We are all appropriately exhausted today.  Except, of course, Joseph who has headed to a friends home at Rye Beach.  Poor kid had his wisdom teeth out admist all this but luckily there were no complications and he recovered pretty quickly.

Medical Updates:  Well one benefit of being zonked out from low blood and platelets these last several weeks is that I get to spend time with my friends and family who have been driving me to/from Beth Israel.  Thanks to all of you - especially those on deck during these busy weeks (Annie, Anne Marie, Bob, Lorainne, Joseph, Jim, Robert...)  If I haven't shamelessly tapped you for a ride and you are local look out for a call.

I continue to get stronger physically and build my stamina.  I stopped taking an antibiotic a couple weeks ago which is the likely culprit for my low blood counts and subsequent fatigue.  Sooo hopefully I won't be as tired in the upcoming weeks and will be able to dial back on the clinic visits.

Jim and I will see Dr. Avigan this week and hopefully get a sense of next steps in my treatment (as well as the timing).  My disease is under control but not eradicated so some type of treatment is in my near future.  Luckily I am going into it with better energy and a little meat on my bones.  Will keep you posted on next steps in my journey.

Thanks for checking in!  Love - Maureen

Weekend Update Sunday June 5

Fun Update:  Somehow Memorial Day flew past with no update from me!  Well we had a lovely weekend going out on the boat (I basically sat in one place) one of the days and enjoying a barbeque with friends another.  Last week Emma had several eight grade end of year activities including a cruise in Boston and a trip to Canobie Lake Amusement Park.  This coming week is graduation week with a dinner on Tuesday and the ceremony on Thursday night.  Emma is wrapping up her Spring rowing.  She had a regatta this past Saturday and it was simply a beautiful day.  Joe starts work later this month and Jim has been keeping him busy with projects around the house/yard.  This past weekend however was all fun as Jim, Joe and several of Joe's friends went out on the boat.  Today (Sunday 6/5) is a gloomy, rainy day and I have high hopes of getting the house straighted up.

Medical Update:  It has been a little over a month since my return from the last hospitalization.  Over the last year and a half I've had a pattern of the disease being very active => aggressive chemo treatment => recovery => disease recurring at a low level that is manageable => some type of immune acceleration therapy or outpatient maintenance chemo => disease initially responds but begins to grow again => aggressive/toxic chemo.  Right now I am in the recovery phase which has taken a bit longer since I added 2 1/2 months to my hospital stay with a blood infection. 

The treatments have not completely eradicated the disease.  However I continue to show signs of recovery both physically and with the disease being at  relatively low level.  I feel so much better physically and will find out what the next round of treatments will entail probably this week.

Thanks for checking in

Love Maureen