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
Sunday, June 26, 2016
Friday, June 24, 2016
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
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
Sunday, June 12, 2016
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
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
Sunday, June 5, 2016
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
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
Subscribe to:
Posts (Atom)