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.

Monday November 30

Hope you all had a wonderful thanksgiving and weekend. We celebrated with a home full of great friends. A little football, a lot of food and plenty of relaxed conversation. Guinness joined in grabbing a Turkey leg off the buffet table. This after I was extolling his virtues as a dog that NEVER grabs food off the table. Luckily we had all eaten and gone back for seconds before Guinness joined the fun. Joseph was home which was great. Our thanksgiving crowd includes the kids close friends and I think they all had fun.

This past week was the point in my post chemo regimen (about 12 days out from the last day) when my blood counts drop fairly dramatically and I am back to visiting the clinic once a day for platelets and red blood as needed. Luckily I had thanksgiving off!!

Today (Monday) I am also getting a bone marrow biopsy in preparation for th  donor cell infusion. The biopsy will tell us how much of the marrow is me vs the donor. It will also let us know if there is any leukemia lurking.

The infusion will introduce more healthy disease fighting white blood cells in an effort to both eradicate any remaining leukemia and boost my immune system. When someone relapses like I did in August, this is standard protocol to get then back to remission. Complications from August until now prevented us from doing the infusion earlier.

If all goes as planned in coordinating with the donor, we are looking to do the infusion within the next two weeks. will keep you posted.

That's it for now. Will post again when I get the results of the biopsy. In the meantime, thanks for checking in.

Love. Maureen

weekend update November 20

What a few days!  This week I have been unusually winded and short of breath. It was to the point where my friend Amy had to wheel me into my appointments Thursday. Thank goodness she was there!  I never use the wheelchair but could not get more than a few feet without  stopping to rest.  Anyway that started a whole new series of tests (including an ekg, walking heart rate and echocardiogram) So here is where we are.

First the EBV...Per the pet scan the Epstein barr virus has not spread to my lymph nodes which is great news.  That would have complicated my next phase of treatment (the donor cell infusion).

The shortness of breath and accelerated heart rate could be explained by inflamed lungs from either an infection or a reaction to one of the drugs. It could also be low red blood (leaving me anemic)  I did get red blood during my 6.5 hour clinic visit on Thursday (again so grateful a friend was with me!) and feel much better today.  I was back in Friday for the echocardiogram and also got platelets

The weekend has been great.

Friday Emma and her great friends Samantha and Caitlyn were in a county wide geography competition called jowdy. For the second year in a row this team won each round and  ultimately won the competition.  Congratulations girls. A hard one victory and we are very proud.

 I was back in the clinic on Saturday and spent the time with one of my closest long time friends from Ohio, Tom. We had so much to catch up on and it was lovely to see him. Jim joined Tom for the Notre dame (Tom is an alum) BC game. What a game!  Yesterday afternoon Emma had several friends over who will be joining us with their families on thanksgiving. Their work was complemented by a visit from even more Thanksgiving angels today delivering tables/chairs/linens and providing amazing set up service for the holiday we are hosting here later this week.  They did a great job getting our house set up for Turkey Day.

 Sooo grateful for our friendships and for feeling stronger.  What a fortunate and blessed life I have.

Add to top it all all off Joseph comes  home Tuesday and we cannot wait!!

Thanks for checking in

Love Maureen

Quick Update Wednesday 11/18

Hi everyone

In a recent blood test I was found to once again have elevated levels of the Epstein Barr Virus.  This happened once before.  The virus is something that apparently lives in all (or most) of us at such a low level as to be undetectable.  A complication of the transplant is elevated levels of this virus.  Apparently the test shows my level is higher than the last time and I am having a PET scan to see if the virus has impacted any of my organs or other parts of my body.

My medical team fully expects to see the virus has not had any undo negative impact.  So I am going with that expectation.

The above was communicated over the phone so I undoubtedly missed some things.  In my mind the summation is - they saw something they did not like in a blood test but it does not appear to be too bad - I will get another test to be sure initial thought of 'this is not too bad' is confirmed.

We are moving toward the donor cell infusion (I am calling this a mini transplant - it is basically a boost of my donor's healthy white blood cells).  If all goes well that will happen within the next 2 to 3 weeks.

Will update again tomorrow.

Thanks for checking in

Love - Maureen

Monday November 16

Good afternoon!  Well I did break out of the hospital on Wednesday of last week (Nov 11).  I had some kind of virus that settled in my lungs but the antibiotics did the trick.  How wonderful  it is to be back home!  Joseph was in this weekend and it was wonderful to see him.  He and Emma spent the day together Saturday and we had a Staudt movie night on Sat evening.  It is kind of nice having him home when all his friends are still at school so we are the only game in town!

I continue to go into the clinic daily for infusion chemo (Decitabine) for a course lasting 10 days.  Since I started in the hospital my day 10 actually comes tomorrow!  I am also back on the pill chemo (Sorafenib).

Next up in my treatment is likely a donor cell infusion - this is the infusion of white blood cells from my original donor.  While the chemo has been very effective keeping my leukemia in check, my greatest chance for full remission is getting a 'boost' of cells from my donor.  This will amplify the immune effect so any future recurrence of leukemia will be battled back by my new enhanced immune system.

We held off with this infusion until my previous rash cleared up thinking that rash was graph vs. host.
It does get confusing but I am confident I am on the right course of treatment.  I am showing no leukemia in my blood stream which is great.  Right now I am a bit tired from the Decitabine.  This too shall pass.

Will keep you all posted on my progress and next steps.

Thanks for checking in.  Love Maureen

Monday November 9th

What a gorgeous fall weekend we had. Joseph has started track practice at Bowdoin and is very glad to be getting back on the turf or asphalt or grass or whatever. The first meet is not until January but that will come soon enough. Jim and Emma watched the patriots game on Sunday with some good friends and had a wonderful afternoon. They came to see me at the hospital Saturday  we had dinner  and watched  a few  college games.

Yes I am back in the hospital for a quick tune up. In my normal clinic visit on Friday, I had a fever of 100·9. I tried every argument I could think of to get them to agree to send me home. They were having none of it.  Periodically over the last 6 weeks or so when my white blood count was insanely low, I would marvel I had not caught a virus landing me back in the hospital.  Anyway that time came Friday and while I am sick to pieces of always finding the silver lining, I must say that if I was going to get a fever I am so glad it was on a clinic day so they could act quickly and get me treated quickly.

Today is Monday and I may go home as soon as tomorrow. I also started my next round of chemo which I can continue as an outpatient.

So never a dull moment.  I promise you this hospital stay is not a setback. It could have been if it was not treated so effectively.  So hopefully I'll be home in the next day or so.  Thanks to all of you for your support and prayers. And Thanks for checking in. Love Maureen