Merry Christmas - 12/25/2015

And the angel said unto them, Fear not: for, behold,

I bring you good tidings of great joy, which shall be to all people

Thanks for the amazing year of hope, peace and kindness.  From the meals to the visits to being the recipient of my predizone induced insanity (sorry Mom).  You've walked beside me and carried me through this last year.  May God bless you and your families and may we all be slightly more aware and understanding people for all we've been through.

Love - The Staudts

Quick Medical Update:  In the clinic yesterday and by every measure I am doing very well.  Leukemia continues to be non-existent in my system, my marrow is finally producing healthy cells (a key step in my being a self sustaining leukemia free person without the need for transfusions every few days).  No complications such as heart/kidney/liver issues and for the first time since this summer I am not neutropenic (i.e. my white blood cells are many and strong and can fight their own battles should an infection come my way).  

On Christmas Eve, spent the morning in the clinic with cousin Mark and his wife Karen which was so lovely and relaxing.  Then spent the day with Jim, Emma and Joseph.  We went to Christmas Eve mass and were among the last to leave as we finished conversations with friends.  Jim and Joseph headed to our wonderful neighbors Richard and Christine for their annual party then we all settled in for the night.  Today promises to be a relaxing Christmas pajama day with presents, food, family and never ending gratitude.

Merry Christmas

Love 

Maureen, Jim, Joseph and Emma (oh and Guinness

Tuesday December 22

Some solid holiday healing happening here in north Andover and Boston.

There are 3 sort of buckets to look at:

• Am I leukemia free?  Currently yes and that has been confirmed in my last bone marrow biopsy about  month ago.  We attribute this to clean living and a chemo pill I was taking pretty regularly that also has the important side benefit of boosting my healthy immune system.
• How do I stay leukemia free?  For this  I need a strong immune system and marrow that keeps producing  healthy cells. My donor cell infusion was  really helpful here as that resulted in a boost of my immune system.  In addition my marrow is now producing red, white blood cells and platelets requiring less frequent infusion.   My marrow has not been consistently productive since this past summer so this is huge.
• Minimizing or maximizing those crazy thing  that crop up. As I have complications like low blood pressure or fever I put myself in the capable hands of my medical team. I have  gotten red blood and  even gone back into the hospital always getting back to my baseline 

Current status. Still in the clinic every other day through next week at least. All numbers looking great. Blood counts are up (showing recovering marrow)  Liver numbers back to normal range. Most recent cardio echocardiogram shows me having   healthy normal heart infraction. Again first time since  this summer. Rash hanging  on but is indicative of strengthening immune system.

Emma has a Christmas pageant today that I will likely be able to make. Kids have been making Christmas cookies and helping with the last of the holiday prep. Jim is doing great and keeps it all together (especially with the unexpected week in the hospital ending last Friday)  All great here   

Thanks for checking in and Merriest of merries

Love Maureen

weekend update Friday December 18

Heading home tonight. Woo hoo. My good friend Judy will be here shortly to spirit me home. I am going home with a healthy blood pressure and feeling great overall. Keeping an eye on my rash which persists but is not causing any real trouble.

My liver enzyme numbers had been elevated but  those are coming down as well. Most likely graft v  host.

Finally my blood and platelets counts are looking good.

So great day today. What an awesome Friday. Oh and Joseph is home so we are all back together.

Thanks for checking in and a special thanks to Beth and Judy for your help this week.

Love Maureen

Tuesday December 15

Looks like I will be in the hospital a bit longer than we originally thought.  My liver numbers are elevated - could be drug related, could be tied to graft vs. host - either way they need to see the trajectory before I go home.  Since the liver numbers are drawn each morning I am here a few more mornings to see if the direction they go.  My treatment plan will be adjusted accordingly (possibly daily) and probably involve adjusting my steroid medications.

This is a hassle in that it has me in the hospital longer than otherwise but is entirely manageable to get stabilized.  Just need some time.

So what the heck?? - if you missed Monday's update...I am back in the hospital as of Saturday 12/11 admitted with low blood pressure, a fever and rash.  The blood pressure improved with fluids and steroids.  The rash brought under control with steroids and the passage of time.  The fever was treated with antibiotics.  Today (12/15) I am feeling really good - no fever, blood pressure normal and rash rapidly disappearing.

So where did this  all come from...When things like this happen, the usual suspects always seem to be an infection. graft vs host or drug reaction.  So far all my cultures have come back clean (no growth of an infection).  This may be a drug reaction to an antiviral medicine.  I've been on that for awhile but my body may be reacting differently post DLI.  Finally (and this is the leading likely diagnosis) this is all likely tied to graft vs. host an expected side effect of the Donor Lymphocyte
infusion (DLI) I had Tuesday 12/8.  The infusion is the one we've been waiting for to give my immune system a boost helping keep the leukemia at bay.  The immune system in overdrive can cause GVH which is my immune system going after any organ it sees as foreign (skin, liver) or compromised cell (leukemia).  So it is a good thing that has to be managed which is happening now in the hospital.

When will I go  home?  That is unclear until my liver numbers stabilize...not before Friday.  Will keep you posted.

Thanks for checking in!!

Love Moe

Monday December 14, 2015

Wow - sorry for the blog writing dry spell but with good reason.

Still walking on clouds with the news of the biopsy showing no leukemia.  Thanks for all your beautiful prayers and support - and a heartfelt thanks to God who has walked beside me and continues to carry me through this remarkable journey.  We still have a ways to go to keep me healthy and firmly in remission and so many, many things on our side to get me there.  Okay take a look at what a difference a couple weeks can make.

First the social side...we have had some lovely times with friends and family (by this point friends are family)...anyway, a lovely dinner with friends the weekend before last.  One of Emma's best buds Jane came to join us with Jim/my best buds Kirsten and Glen.  They brought their dog Cash who enjoyed Guinness's company for a good portion of the evening and was disappointed he could not find Guinness' off switch.  We left them outside for as much of the evening as possible.  My cousin Margein joined us earlier in the afternoon and we went to Michaels Crafts (what a trip of love) where Margein and Emma found lots of stuff to make homemade gift tags.  We brought home our haul and Emma and Jane made some really clever tags.  Very fun and festive evening with everyone enjoying the Staudt meatballs from their secret family recipe!!

Christmas decorations are 99% of the way up and will not get to 100% this year.

Now on the AML side...This past Tuesday I received the donor cells and my cousin (by marriage to my cousin Joe) Jane was with me during the infusion.  All went well with no immediate complications or side effects.  Awesome day and lovely of Jane to keep me company.

Thursday had me back at the clinic for platelets and a scheduled CAT scan for my lungs.  In late Oct/early Nov I was admitted to Beth Israel with a fever that always is alarming when ones white count is low to non-existant.  Anyway I had a CAT scan then which showed some inconclusive but suspicious shawdows on my lung that could have been pneumonia.  I was given antibiotics and sent home after several fever free days.  This recent CAT scan was to see if the pneumonia was still there and it was/is not hooray!!

BUT (why is there always a but) I was exhausted all day Friday (like struggling to get down the stairs tired) and began to notice my chest and torso were bright red.  By Saturday I had a full blown rash (again!!) mostly on my arms,  torso and neck which spread throughout the day.  I already had a Saturday morning appointment to which my friend Karen drove me and wheeled me to (I don't want to get used to the wheel chair but it is sooo nice when you need it).  Jim and Emma were at her High School placement exams.  Karen and I have known each other and been good friends for years and she is also  Mom to Joe's sponsor from last year's Mr North Andover (Megan Collins - Joe's ringer).  It was so great to spend time with her.  We also met up with  my Aunt Debbie and cousin Kathleen. I rarely get to see Kathleen as she lives in DC so it was so nice of her to spend part of her Mom visiting time with me in the clinic.  Also I ended up being admitted to the hospital and that is always scary news to get when you are alone.

While at the clinic appointment I had my vitals taken (as usual) which showed an extremely low blood pressure and an extremely high heart rate.  My poor little heart was racing like the dickens to compensate for the blood pressure.  Anyway my BP was so low they needed to admit me and get it under control fast.  With the help of fluids and steroids my blood pressure/heart rate improved and I was able to go to my home away from home 7 Feldberg at Beth Israel instead of the ICU.  I remain at Feldberg today (Monday) and the earliest I would be discharged is the 16th (some irony here as this is the day I was admitted in 2014).

They are not sure the underlying causes for the fever (oh I had a fever too) the rash and the low BP.  A strong guess right now is this is tied to the new lymphocytes from the donor and the contrast liquid I took for the CAT scan.  But we may never know  - I am just thrilled and grateful they are both under control.

So will keep you posted on when I get out of the hospital.  Again looks like it will be a pretty quick stay with the problem(s) I presented getting addressed with very quick, compassionate and effective treatment.

Thanks for checking in on this zigging and zagging journey which always happens to keep going in the right direction!!

Love Maureen

Weekend update 12/4

Bone marrow biopsy results are in. I am leukemia free!!  Next ste donor cell infusion scheduled for Tuesday. More later but wanted to share this blessed news.