Weekend Update Friday January 29

Hard to believe it is almost February!  Jim, Emma and I head up to Bowdoin today to visit Joseph and watch tomorrow's track meet.  Joe has kicked off his season in impressive fashion.  Emma and I are also quite excited to be staying in Freeport the outlet capital of New England!  Despite Guinness silent pleas he is staying home and will be in the care of our dear friends Scott and Karen.  Emma joins her school at St Michaels on Sunday to kick off Catholic School week.  She is looking forward to doing a reading at Mass.  My Mom went home on Thursday after a wonderful and extremely helpful visit.  It was a busy clinic week for me and great to have her support.  Kate comes in Tuesday and is here until Saturday.

Medical Update:  Dr. Avigan outlined my treatment options again yesterday (Thursday 1/28).  One interesting option (again a clinical trial)  is a gene therapy that targets the gene that produces leukemia.  The treatment, given via IV, runs for a 21 day course.  I'll be in the clinic 15 'work' days getting treatments for 3 mon thru fri cycles with the weekends off in between.  After 21 days we will see how the treatment is working and decide if another course makes sense.  During this time I will still be getting platelets and blood as needed.

Jim and I meet with Dr Avigan and team on Monday to get some of our final questions answered but most likely will start this treatment Monday.  The side effects are minimal and the lab results are promising.  Will let you know what happens next week .

Thanks for checking in and keeping us in your prayers

Love Maureen

Weekend Update January 22, 2016

A chilly weekend here.  Emma and I went to an open house for one of the high schools to which she is applying.  Jim took my Mom up to Bowdoin to watch Joseph in a track meet.  From the texts Jim is sending it sounds like Joe is having a very good day.  During the meet, the announcer gave a shout out to "Joe Staudt's Grandmother who is visiting from Cleveland"  Pretty cute

Medical Update:  Ambiguity reins with my condition.  The continuing good news is the leukemia has not shown explosive growth.  Instead it remains in my blood stream at a relatively low level having shown signs of responding to both the chemo which finished Friday January 16 and my immune system.  What we are looking for at this point, however, s the leukemia going completely quite with no presence in my blood stream.  It is frustrating we are not seeing that and has us looking at more aggressive therapy in the near future.

I will likely start a clinical trial in about 3 weeks with medications for immune amplification.  I have taken these types of medications before but not the two drugs in the trial.  This would possibly be followed by another donor cell infusion.  Another option is a more aggressive, toxic chemo (the one that makes me lose my beautiful new and quite soft hair).  We would go this route if the leukemia persists and/or grows in my blood stream.

So not great news this past week.  However we continue to fight the good fight and pray my leukemia stays controlled enough for me to start the clinical trial in a few weeks.  (In order to enter the trial participants need to be 3 weeks out from their last treatment.)

Thanks for checking in and will probably update again next week unless something comes up before then.

Love
Maureen

Weekend Update - Saturday January 15

Seeing a little light fluffy snowfall with those big flakes that are pretty and don't cause too much trouble for driving.  Emma is off to a girl scout event today where she and her friends will do some (indoor!) rock climbing and spend the night.  Joseph has his first track meet at Bowdoin.  He is doing the Heptathlon and did half the events yesterday.  Jim drove up this morning to see Joe participate in the other half.  The Heptathlon includes the high hurdles, 60 m dash, pole vault, high jump, 1000 m run (Joe's least favorite) - this morning he starts with the hurdles.  He's doing well so far.  This just in - he won the heptathlon )

Thanks to my dear friends Karen and Anne Marie (and my handsome husband Jim) for going with me to the clinic this week.  They were great company especially as I needed the extra TLC as I faced this latest round of chemo.  My Mom comes in on Wednesday which will be terrific.

Medical Update:  Pretty straightforward week getting chemo every day and infusions of platelets/blood a couple of times.  On Wednesday I had an elevated temperature and was almost hospitalized but the temp came down of its own accord.  Not sure what was going on...maybe my body was fighting off an infection.  Soooo glad I stayed out of the hospital.  I have the weekend off from the clinic and head back Monday for labs/infusions.  The leukemia is responding to the chemo which is wonderful.  I will be facing more treatments - one set of treatments would start a month out from the last day of chemo.  I may need other treatments depending on how I do the coming weeks.  For now it is trips n and out of the clinic for labs and infusions of platelets/blood as needed.

That's it for now

Thanks for checking in

Love, Maureen

Wednesday January 13

We had a beautiful snowfall last night.  Just enough to cover the gunk but not enough to disrupt travel.  That is my kind of snowfall.  Compare this to the 8 - 10 inches my Mom reports in Lake County OH.  No wonder she is wintering in the mild climate of North Andover, MA beginning next week - I look forward to seeing her on Wednesday the 20th!

Medical Update:  On Monday I started a five day course of  Dacogen.  This is a low intensity chemotherapy I've had before and tolerated well.  Main side effects were occasional exhaustion, some nausea and loss of appetite.  This treatment causes death to rapidly dividing cancer cells and also restores the normal function to tumor suppressor genes restoring control over cell growth.   In the short term all my blood counts will likely drop bringing me into the clinic for frequent infusions.  Eventually (hard to tell how long) the blood counts will rebound while the leukemia cell production will (hopefully) continue to be suppressed.  I will likely have other treatments beginning next week.  Focusing on the here and now and will keep you updated as decisions are made and new treatments started.

Thanks for checking in

Love

Maureen

Weekend Update 1/9/2016

Hoping everyone's New year is off to a great start. Emma was back in school this week and we have Joseph for one more weekend before he returns to Bowdoin for track training. First meet is 1/16!  We finally finished de-Christmasing this weekend (well - almost finished).  I find the decor starts looking a bit um stale around the 10th so one more day...Last year I celebrated both Christmas and New Year at Beth Israel and was really in a bad spot with the leukemia showing little sign of responding to therapy. What a blessing to go through Christmas and New Year feeling so strong and positive.

Medical update:   Some disappointing news over the last week with recent labs showing the leukemia reemerging.  It was detected as 'blasts' in my blood work.  Interestingly the blasts have gone up and then down without any chemotherapy.  This tells us my immune system is effectively battling back the leukemia which is good news.  I will still need treatment and this will possibly start Monday - we are looking at chemotherapy, another immune accelerant therapy, or some combination.  We'll see what my blood work shows Monday and then move forward with treatment.

For those of you who have been following my journey this past year, you know how persistent my leukemia has been.  I am so glad to be going into this next round of treatment feeling very strong and always well loved and supported.  The ultimate goal continues to be a curative, sustained remission. Looks like it will be a little longer in coming.

Also all treatment options are outpatient for which I am very grateful.

That's it for now - I'll update the blog as I get into treatment.  Thank you for checking in and now to get back to those last ornaments we hung wayyyy back in the branches of the tree.

Love, Maureen

Happy New Year - Weekend Update 1/1/2016

Hope everyone had a fun and safe New Years.  Jim and I enjoyed the evening with great friends and managed to stay up to watch the ball drop.  This break from school has been terrific for the kids but sadly flying by.  They've both kept busy while managing to make time for Mom and Dad.  Emma is back to St Mikes on Monday the 4th and Joe goes back to Bowdoin on the 11th for track practice/training.  School for  him starts the  end of January.

Quick Medical Update:   Since being discharged from the hospital on 12/18, I am in the clinic every 2 - 3 days getting labs drawn and being  monitored to see if infusions are needed.  My blood counts remain pretty stable and infusions are occasional instead of frequent. In the clinic today, Saturday, getting platelets and red blood for the first time in two weeks (the longest I've gone since the summer).

I continue to have a strong white blood cell/neutrophil count allowing me to roam around mask free and eat without restrictions (tenderloin properly cooked never tasted so good).

My immune system is strong and active which is critical to my long term health. I have mild Graftt vs Host, a common side effect of transplants where the new immune system gets a bit over-active (note: mild GVH is a good thing) causing side effects like a skin rash.  That has been a bit uncomfortable but manageable - I am on a low dose of prednizone to help manage the discomfort without suppressing my immune system.  GVH can become more serious and is another thing they are monitoring via the labs.  So far so good!

That's it for now - my next clinic visit is Monday but I may not update again until next weekend if there is nothing new going on.

Thanks for checking in

Love Maureen