Mazie Shore

As you all know, Mazie succumbed to AML on November 24, 2012.  She was 23 years young.  This past week Mus, Zeke (via phone) and I meet with Ilene and Dr Stone, to go over the autopsy results, and to find some closure.  I thought you might like to know what we learned.

The cause of death was Sepsis (infection), due to extremely low blood counts after chemo, and AML.  Fungal infection was present in several major organs and blood.  This caused her heart to fail.  Also, there was Leukemia present, which means the chemo had NOT gotten her to remission.  All very hard to hear.

Here are some other things we learned, in no particular order...

1.  The first drug she was on, Panobinostat (LBH) was a new drug trial.  It is showing some promise.  They are still using it at a slightly different dose.

2.  It is not clear the Panobinostat caused her heart failur.

3.  What are the odds?  AML occurs more commonly in older adults and more commonly in men.  The risk factor for the general population for AML is 3.6 per 100,000.  For women it is 3 per 100,000.  Of these cases, 10% get the M7 factor complication Mazie had.  6.6% are affected between the age of 20-34.  So the odds were roughly1 in 5 million.

4.  In addition to having a rare, highly aggressive form of Leukemia (AML), Mazie also had Monosomi 7 (M7), which I'm still having trouble understanding, but I'll explain the best I can.  Monosomi 7 means there was something wrong with her 7th chromosome.  It's not clear whether this was a congenital situation, or caused by the Leukemia.  In any case, the combination of AML and Monosomi 7 made her cancer extremely difficult to treat.

5.  Where did this come from?  I came away from the meeting understanding the cause was most likely environmental.  Mus came away from the meeting understanding, there is no way to know, it could have been hereditary.  We will never know.

6.  Mazie went into the hospital 11/5 for the strong combination chemotherapy.  She tolerated it REALLY well.  She was tired but did not feel sick.  We took long walks in the hospital most days.  We watched movies.  She was in good spirits.  When she did not feel like walking I would push her in a chair.  She felt good.  She was very positive.  She was doing so well, they said she could come home for Thanksgiving day.  However her fever started the evening of 11/21 and she died on the 24th.  All things considered, it happened very fast.


Mazie was a fighter.  She endured countless rounds of chemo therapy, 7 hospitalizations, 2 liver failures, GVH (graft vs host disease), heart failure, hair loss twice, stem cell transplant, C-Diff, and relapse.  Mazie was very strong and very tenacious.  Unfortunately the tools necessary to save her were not available.   Please consider a donation to cancer research.....

I will be ridding in the PMC again this year, in memory of Mazie.  Every dollar earned from the PMC goes to caner research.  As much as 40% of Dana-Farber's research budget comes from the PMC.  Last year with your help, I raised $7,868.00.  Let us attempt to top that this year. Click on the link below to sponsor my PMC ride,

http://www2.pmc.org/profile/CS0272

We have also compiled pictures and comments from Mazie's Celebration December 1st.  We will make that available soon.  Thank you all for your continued love and support.  We would love to have Mazie's friends visit us when you are in the area.

--cyn

An update

Celebrating Mazie

Celebration / Memorial service

• When: Saturday December 1 at 3:00 PM
• Where: Our home - 52 Nowell Farme Rd. Carlisle, MA
• Parking:  The common driveway is long and thin and cannot accomodate cars. Please park along Nowell Farme Rd, on the right side and follow the path we will illuminate. Of course,  if you are unable to make the walk, please proceed down the drive directly to the house, first driveway on the left of the common way.

Visiting our home

• When: Week of Nov 26,  Monday, Wednesday & Friday 6:00 - 8:00 PM 
• Where: Our home - 52 Nowell Farme Rd. Carlisle, MA
• Parking:  The common driveway is long and thin and cannot accomodate cars. Please park along Nowell Farme Rd, on the right side and follow the path we will illuminate. Of course,  if you are unable to make the walk, please proceed down the drive directly to the house, first driveway on the left of the common way.

Other

• This is a celebration - Mazie style 
• We will be in a heated tent for some of the time, and it might be chilly so please consider dressing casually and warm. 
• In lieu of flowers, consider making a contribution to Dana Farber in memory of Mazie Shore, 52 Nowell Farme Rd. Carlisle, MA. It will automatically be directed to Leukemia research.

Hurricane Sandy, Xavier Rudd, and back to Brighams

Mazie made steady progress through October.  Feeling pretty good, blood counts showing slow but steady improvement.  Unfortunately, the blast count was also showing a slow but steady increase.  On October 23, Dr Stone recommended Mazie return to the hospital for more chemo.  He recommended a combination of Clofarabine (the one she took most recently) and Cytarabine (Ara-C).  This combination would require an extended hospital stay of 4-6 weeks.  Mazie needed some time to think about this and to weigh her options.  Meanwhile, there was a hurricane approaching.

We made all the usual preparations, food, batteries, water.  Cleanup outside.  Then just wait.  Monday morning 10/29, Mazie woke up with a swollen, red and very sore arm.  Something was up.  Although conditions were not too bad yet, we hesitated to drive into Boston, D-F.  So our team sent us to the local ER for ultra sound.  We got there around noon, and while the storm raged outside, they managed to diagnose and begin to treat what turned out to be a blood clot in her arm above her pic line.  Mus reported our power at home went out around 2:00 that afternoon.  Mazie and I finally left the ER around 8:00, driving home through what might have been the peak of the storm.  Trees and electric lines down, a couple detours, lots of debris.  We were really glad to finally get to our dark house!  We ended up having a nice evening chatting in the glow of head lamps and camping lanterns.  Around 4:00 am the power returned.  So we didn't loose the refrigerated food, and were able to shower.

Mazie and I headed off to DF the next morning.  They repeated most of the tests and determined the pick line could come out.  Mazie an I had a very helpful discussion with Ilene, and Mazie decided to go into Brigham to start the chemo Monday November 5.  With all the tests and procedures, it was another very long day.  We got home to no power again.  Thai take out food, and another enjoyable evening with headlamps.  Once again power came on just before dawn and has stayed on.

On Wednesday 10/31, Robert came!!!  Yeah!  A great, although short visit.  On Thursday, Mazie had tickets for Xavier Rudd at the Paradise.  Mus called in advance to explain Mazie's mobility issues (the Paradise is a standing only venue).  We had no idea what to expect.  We arrived late, not knowing how long Mazie would be able to hang in.  The Paradise was amazing!  They escorted us through the crowd to a roped off area just to the right of the stage with 3 seats.  We had a great unobstructed view.  The concert was really good, and it was really fun to be able to do something slightly outside the comfort zone.

So now we are hunkered down, getting ready for the long hospital stay.  Many of you have asked "What can we do"?  Well, now we could use some help.

1.  Mazie would like her friends to visit her in the hospital.  You should call, text or e mail me before you visit to make sure she is feeling up to it.
2.  We could use some meals.  Not every day, maybe 3-4 a week.
3.  We could use someone to coordinate meal donations.
4.  We need someone to bring Abby in and feed her around 5 or 6, on Monday, Tuesday, Thursday and Friday.
5.  We need someone to coordinate the Abby schedule.
6.  Mazie loves to listen to short audio stories when she is not feeling well.  She loves David Sedaris, but has heard all his material several times.  Please suggest other short audio selections you think she might like.

4-6 weeks sounds daunting.  But we are optimistic that the time will pass quickly, and Mazie will be home feeling much better before Christmas.  Thank you all for your continued love and support.

--cyn

Deja vu "All Over Again"

On September 6, Mazie received a DLI infusion of "T-cells" from Zeke.  T-cells are aggressive white blood cells.  The goal is for them to seek out cancer cells and attack.  You will recall, the last DLI  (May 1) resulted in a strong GVH reaction in Mazie, and liver failure, which was frightening to say the least.  But, it did kick some cancer butt.

After the infusion on September 6, we were very vigilant, looking for any signs of GVH.  The first week, she felt really good.  Even the leg pain was improved.  The second week, she was a little tired, and just kinda blah.  On the 21st we were happy to learn all her lab results were in the normal range.  Saturday the 22nd, she felt worse (it's always the weekend, right?) and she had a pretty rough night.  By Sunday morning, it was clear she needed to go into the hospital.  Her symptoms were subtle, no fever, slight nausea, etc.  Thankfully we knew what to look for and caught it early.

Unfortunately, we spent 12 hours in the ER waiting for a bed to open.  This was very tiring, but the nurse was amazing and he moved us to a private ER room and they started treating her immediately.  Her liver function was off the charts.  GVH again.  She was in intensive care until Monday afternoon.  Just like the last time, she responded to the treatment and made steady progress.  She came home yesterday (Thursday the 27th).  She feels, much better, but her liver function is not back to normal yet and she has some lingering symptoms.  But this should all improve with time.

We go to DF on Monday, when we will see Dr Soiffer, (transplant DR) and get a better picture of where things stand.  Meanwhile, we are happy to all be home together for a quiet, rainy weekend.

Sunday, September 30, is the last day to contribute to PMC.  Thank you all for your contributions, and for supporting DF.  If you would like to contribute, click on one of the links below.  Team Mazie!

• Trevor Ruggiero (close friend of Zeke's): http://www.pmc.org/profile/TR0105
• Christopher Voss (close friend of Mazie's): http://www.pmc.org/profile/CV0019
• Cindy Shore http://www.pmc.org/profile/CS0272
• Mary Ellen Heinen http://www.pmc.org/profile/MH0271
• Maxine Hunter http://www.pmc.org/profile/MH0275

Thank you all for accompanying us on this journey. We really appreciate your love and support.
--cyn

DLI #3

Andrea, Dr. Soiffer, Mazie, and 128 million T- Cells

On September 6 Mazie received another DLI.  This consists of T-Cells from Zeke.  This is the third DLI.  To review, the first contained 30 million T-Cells.  The second contained 100 million T-Cells.  I'm a little confused about the size of this last infusion.  Dr. Soiffer said,  1.5 x 10^8.  The bag said 12.18 x 10^7 ???  Soooooo in the ballpark of 128 million???  So that would be slightly larger than the last one.  And it is the end of the cells that were harvested from Zeke Way back on April 2.  He was really pumping out T-Cells that day!  Way to go Zeke!

Let's back track a bit...  Mazie had 5 days of a very strong chemo, August 14-18.  She tolerated the chemo very well, at first.  By August 21 she had a very painful sore throat, and her WBC (white blood count) was .2, almost nothing.  This condition unfortunately got worse, with sores in her mouth and throat, making it nearly impossible to eat, drink, or talk.  This continued for 2 very long, very painful weeks.  The good news is, no fever!  No hospital!

About a week ago (September 4), the pain started to subside.  I'm happy to report she feels much better now, and the WBC was up to .7 on the 6th.  You will recall, the Clofarabine kicked cancer butt.  The blast count has remained low since the chemo ended.  This is new.  This is good.  The hope now is that the DLI will assist in further reducing this count.

Mazie is feeling relatively good.  She went clothes shopping with me one day, and out to a movie with a friend another day, and out to breakfast with Mussie @ Nashoba bakery.  We are on the lookout for any signs of GVH (graft vs host).  But we are also greatly enjoying the fact that the low blast count = feeling better!!!  We will continue to go to D-F Tuesday and Friday for blood analysis, and infusions as needed.  I expect to see the WBC will be higher tomorrow.

Right now there is no next step.  I assume,  another transplant once her counts level out?  Will try to learn more tomorrow, but I'm pretty sure now we wait, and watch for several weeks.

Thank you again to every one who has supported D-F by contributing to my PMC ride.  My total is up to almost $7,600.00.  If you would like to contribute, its not too late.  Just click on one of the links below, " Team Mazie Members".

And thank you, thank you, thank, you.

• Trevor Ruggiero (close friend of Zeke's): http://www.pmc.org/profile/TR0105
• Christopher Voss (close friend of Mazie's): http://www.pmc.org/profile/CV0019
• Cindy Shore http://www.pmc.org/profile/CS0272
• Mary Ellen Heinen http://www.pmc.org/profile/MH0271
• Maxine Hunter http://www.pmc.org/profile/MH0275

Thank you for following the blog. Thank you for keeping Mazie in your thoughts, and thank you for supporting Dana-Farber

--cyn & mus

Another Post!

The news was so good today, I couldn't resist.  Mazie's Blast count went from 85 to 4 in one week!  This is really, really, really good.  This means the Clofarabine kicked some serious cancer butt!  The red blood count did not change.  The white blood count dropped to .2.  This was expected.  It's really low.  She is very tired and has a sore throat ( a condition due to low white blood count) that is very painful.

Dr Stone does not think the rash on her hands and feet is due to the dermatitis common to this chemo.  He thinks it is more likely an allergic reaction to "something"?  So she will continue steroids for a few more days.  She did not require any infusions today.  We will "stay the course" till our next visit on Friday.

Although she feels like crap, we are all very positive.  The DLI is most likely 2 weeks from today.  It is very important that Mazie not be exposed to any infections unnecessarily.  If you have cold or flu symptoms, or know you have been exposed, please do not visit now.

As we continue to "watch" and "wait", I want to thank you all again for your continued support.  Thank you all for supporting the PMC and Dana-Farber.  And thank you for accompanying us on this journey.

--cyn

Sorry For the Long Delay

A lot has been happening, and I did not want to post with out more information.  So let me bring you up to speed.

Starting around July 25, Mazie's Blast count started to rise.  You will recall, after the last DLI, the Blast count went very low.  In fact lower than it's ever been.  The hope was the count would stay at this low level while they "weened" her off the steroids.  Unfortunately this did not happen.

Although a bone biopsy was not required, Mazie decided she wanted to know.  So on July 31 Mazie had another bone marrow biopsy.  August 6, we met with Dr Soiffer (transplant Dr) to discuss the plan going forward and to get the results of the biopsy.  Once again the biopsy showed a lower number than the Blast count (confusing).  The team felt another transplant at this time would not be safe.  It would be necessary to get the blast count greatly reduced again.  It was decided another round of stronger chemo was required.  This Chemo, Clofarabine,  could be administered out patient, but there was a 50% chance of ending up in patient due to infection, high temp, etc.  

Mazie started Clofarabine last Tuesday, August 14.  Ending on the 18th.  One of the unique side effects of this chemo is a dermatitis- itching and peeling- of the hands and feet.  To lessen this, she is back on a low dose of steroids.

On Friday, after 3 days of chemo, Mazie's blast count had dropped 25 points.  This sounds good, but we did not see any Dr's.  Yesterday, Mazie's hands became splotchy and itchy.  She is very tired and uncomfortable.  We go back tomorrow for a follow up, blood analysis etc.  We will be going twice a week, Tuesday and Friday going forward.  The goal is to get the count as low as possible followed by another DLI from Zeke.  I think this would happen early September ideally.  

Meanwhile we watch and wait, and hope Mazie is able to stay infection free and home.

The PMC was a great success.  It was EXTREMELY hot and humid, but we did it.  We averaged about 15 mph over the 2 days.  To date I have raised just under $7000.00.  If you have not yet contributed, it's not too late.  Click on one of the links below.  "Team Mazie"!

• Trevor Ruggiero (close friend of Zeke's): http://www.pmc.org/profile/TR0105
• Christopher Voss (close friend of Mazie's): http://www.pmc.org/profile/CV0019
• Cindy Shore   http://www.pmc.org/profile/CS0272
• Mary Ellen Heinen   http://www.pmc.org/profile/MH0271
• Maxine Hunter   http://www.pmc.org/profile/MH0275

(Trevor went much faster, and Chris was not able to ride due to a broken leg suffered while training.)

Thank you all for continuing to follow the blog, and for all your love and support.  Fingers crossed during this difficult stretch.

--cyn.

Happy 4th of July!

Happy 4th of July to all. Happy to have a few days off to reflect and catch up. As it turns out, when Mazie was admitted to the hospital on June 12, her condition was critical. I am happy to report there has been a great deal of progress. Her liver function is almost back to normal. She is being treated with Diuretics and Steroids. They are slowly reducing both.
The amazing thing is, while in the hospital, and since she has been home, her counts continue to improve. Her blast count is lower than it has ever been! Her blood counts are not yet normal but greatly improved. And her pain is significantly reduced!!! They have backed down her pain medications. This all points to G v H (graft vs host) and this is good.

There is no clear plan for how to proceed. My best guess is they will slowly ween her off the steroids and diuretics, and wait to see if her condition remains stable, improves etc. Then I'm guessing we look for a new donor for a stem cell transplant, but that is speculation. Right now she feels a good deal better. Unfortunately the steroids have their own side effects. She is very "full" or slightly "puffy". They make her constantly hungry, and anxious or jittery feeling. So she can't really take advantage of feeling better. They have reduced our visits to 1 per week, usually Tuesday. We see the Cardiologist this Tuesday also. So once again, we will wait. And see!!!

Meanwhile, thank you all for making my PMC fundraising such a success!!! I was going for $5000. right now I have raised $6368. That is so awesome!!! Thank you all so much. If you have not given and would like to, please consider sponsoring another "Team Mazie" rider who has not yet reached their goal. Below are links to their accounts

• Trevor Ruggiero (close friend of Zeke's): http://www.pmc.org/profile/TR0105
• Christopher Voss (close friend of Mazie's): http://www.pmc.org/profile/CV0019

The training is going OK, although I'm behind because of my knee surgery. 40 miles today, 50 yesterday. 65 on Monday. My butt hurts :-) Temperatures in the 90's is not helping. But together, we are raising a lot of money for Cancer research. Thank you. And thank you all for continuing to check in and support us on this journey. It means so much to all of us.

--cyn

Home!

Mazie arrived home today! Yeah!!!  She looks good and feels good.  Her liver function is back to normal.  There are still more questions than answers.  So far all tests are normal.  She will continue to take steroids and diuretics for now.  We will see Oncology and Cardiology on Tuesday.  Her counts continue to be good.  Better than they have been in a long time.  No blood or platelets required while in the hospital.  That's really good!  We are for now, in a holding pattern.  Hoping the counts will continue to improve.  She also reports slightly reduced leg and back pain.  It is so easy to get our hopes up.  For now, we wait to see.

--cyn

Lot's to Report

On May 14 I had my knee surgery.  We were very lucky to have Robert stay with us while I was in the hospital, and at home recovering.  He continued to take Mazie to D-F.  He also shopped and cooked for the family and kept us all happy.  Every family needs a "Robert"!  We are so grateful!

On May 15, it was determined Mazie needed more chemo.  She started an 8 day cycle of Decidebine  on the 18th, ending on the 25th.  She handled it very well, just tired and leg/back pain.  On the 25th we were all very happy to have uncle Rus, aunt Mary Jane, and cousins Kesi and Tucker arrive for the memorial Day weekend.  The weather was great, and we had a great time with lawn games, food, and a large helium filled clown fish "swimming" by remote control all over the house.  Thanks so much for coming!  It was a great weekend.

Robert continued to drive, cook and shop till I was back on my feet.  On the 8th of May there was some discussion of Mazie going into hospital for a round of stronger Chemo.  I was feeling good, able to drive etc. so we sent Robert home knowing he was ready and very willing to return if and when needed.

Mazie did not feel well at D-F on May 8.  Lots of nausea, and an unexpected weight gain of almost 10 lbs.  She was put on an oral diuretic.  She continued to be very nauseous, and blotted all weekend.  Not keeping much of anything down.  On Monday morning we headed into D-F (date had been changed for this week).  It was clear something was wrong.  She was confused and "clumsy".  Test results showed her liver function was off, requiring hospital admission.  So that is where we are now.

In hospital she is receiving IV diuretics and steroids, and her symptoms have diminished considerably.  She has had a liver scan, a brain scan and a heart scan.  Liver is swollen.  Brain is fine.  Heart shows no further damage.  They have run lots of tests.  We have no answers at this point and it's all confusing but I will try to explain the possibilities...

1.  It could be G v H (graft v host disease).  This would mean the last DLI was working.  Her white blood count is up, and blast count is down, and she has poly's.  This is good.
2.  A liver biopsy is not out of the question.  They won't do it as long as she continues to improve.
3.  "Hepatitis" means swollen liver.  Not a specific disease.
4.  Could be related to reduced heart function. Her Cardiologist Dr Norhia, does not think this is the cause.
5.  Could be Leukemia attacking the liver.  Ilene does not think this is the cause.
6.  It could be some other infection.  They have tested for numerous infections including CMV, EBB, Hep 2 etc.  Results take 24-48 hours.

So here we are, the familiar "wait and see".  Mazie is feeling much, much better.  Her only complaint now is that she wants to go home.  Dr Soiffer said 2-3 days if all continues to improve.  Hopefully test results will continue to rule out some of the "unknowns", and Mazie will continue to improve.  Send "Positive DLI" thoughts her way.

Contributions to my PMC ride still greatly appreciated, and needed.  Google PMC for information or click on this link to contribute.  Thank you.

http://www.pmc.org/profile/CS0272

Thank you all for continuing to follow Mazie's progress.  --cyn

Second DLI

On Tuesday, May 1 (May Day), Mazie got another DLI (Donor Lymphocyte Infusion).  These cells were harvested from Zeke April 2nd.  Mazie received some on April 3rd.  The rest were frozen for future use.  When they are frozen, a preservative is added.  There was some discussion about the "fragrance" of this preservative.  We heard it smelled like "garlic" from some, and "fish" from others.  And we were warned this "fragrance" might linger on Mazie for a few hours.  She did not like the sound of this.

It turned out to be a very long day.  We arrived at 10:00.  The thawed product was not available till after 5:00.  I'm happy to say, they "scrubbed" the product to remove all scent.  The infusion only lasts about 10 minutes.  The first DLI, in April, had 30 million T cells.  This second infusion had 100 million T cells.  The T cells are supposed to kick some cancer butt.  We had to stay an hour after the infusion ended to ensure there would not be an allergic reaction.  We got home around 7:30.  And Mazie smells normal.

Mazie looks good and feels good, with the exception of the persistent leg pain.  Her counts are slowly raising and we are trying new pain meds as of today.  We found a yoga teacher who can come to the house, and Mazie had her first session on Thursday.  She feels like it will be very helpful.

That's all that is new.  We will continue to go to D-F on Tuesday and Friday.  In 4-6 weeks the team will determine what the next step should be.  Spring has fully sprung here.  This past week of rain and drizzle has made everything very green.  Thank you to everyone who has contributed to my PMC ride to support Dana-Farber.  I have raised almost $3000.00.  If you would like to donate, use the link below

http://www.pmc.org/profile/CS0272

Still no kittens.  How is this possible?  If you here of kittens please let us know.  And thank you all for your continued love and support.  Happy Cinco de Mayo!

--cyn

A Royal Pain in the Ass, and "It's Always Good to Get a Fifth Opinion"

April 2nd Zeke and I arrived bright and early at D-F for his part of the DLI. It is the same machine that was used to extract his stem cells for the stem cell transplant last July. Surprisingly, they use a color chart to make sure they are getting the right product.

It looked like it was between Pantone 1777 and 1787. Zeke was hooked up for about 5 hours, and managed to pump out lots and lots of T cells. Tuesday was a really long day. Mazie needed blood and platelets and lots of pre meds. She finally got the DLI at 3:30. Here is Rachel, one of Mazie's nurses, just before the infusion.

We had to wait a little over an hour to make sure there would be no reaction. We got home around 6:00. Unfortunately, later that night and the next day, Mazie became very, VERY uncomfortable. Not because of the DLI, but because a "cyst"? had developed on her bottom. By Thursday it was clear she needed to be in the hospital. A surgical procedure was performed to deal with the abscess and she was put on IV antibiotics. A royal pain in the butt!!!

She came home Saturday the 7th, the Easter Bunny found her here, and Robert arrived on Sunday. Her surgery wound is slowly healing. While she was in the hospital, Dr Soiffer, her transplant Dr visited. She learned the DLI contained about 30 million T cells. In 4-6 weeks they will infuse another round, this time 100 million cells. You will recall the extra "material" that Zeke produced can be frozen and saved for future use. We don't have an exact date for that yet. Meanwhile we will continue our Tuesday and Friday visits to D-F.

Meanwhile back at the ranch, I'm still not walking. I finally got in to see the surgeon who did my original partial knee replacement in 2007. He compared x rays taken last November to x rays taken last week. The difference was astonishing. The knee has deteriorated dramatically, and it's time for total knee replacement. Not what I wanted to hear. But I've booked a surgery date, May 14, and am on the cancellation list for an earlier date. Surprisingly, ridding the bike does not hurt. I've been doing 60 minute intervals inside for 2 weeks, and started ridding outside again on Saturday. I have a month to ride before my surgery. After 6 weeks of recovery, I will have another month to train for PMC. Not ideal but I'm determined to do this. I think Robert will be able to come and help out with cooking, shopping and driving while I recover.

Thank you to everyone who has already contributed to my ride. My goal is $5000.00. I'm just under $2000.00. If you would like to contribute, click on this link

http://www.pmc.org/profile/CS0272

I can't decide whether it would be more productive for me to train during these small windows, or whether I should fashion a small cart for the rest of team Mazie to pull me in (Max, Mary Ellen, Trevor and Chris)???

Other news.... Mazie wants a kitten. We have been unable to find one in a local shelter. If you here of kittens, call us. And thank you all for your continued love and support.

--cyn

Donor Lymphocyte Infusion

Mazie will be getting a Donor Lymphocyte Infusion (DLI) on Tuesday April 3. Zeke will be the donor once again. He was in town last weekend for a pre procedure physical. It also just happened to be the weekend before both Mussie and Zeke's birthdays, so we had a little birthday dinner celebration. We were surprised, and very happy, when Len and Mel arrived from Seattle and Robert came from Vermont to help us celebrate. A good time was had by all!

Mazie's Dr's also re-arranged her schedule for this week, giving us a large enough window to get away for a few days. So on Tuesday Mus, Mazie, Abby and I hopped into the car and went to Great Barrington. Although it was kinda cold and rainy it was really nice to be away. Mazie's friend Mel met us there, and we all had dinner at Local 111 (the restaurant Mazie interned at 2 summers ago).

Zeke will return again this weekend for the DLI. Early Monday morning he will go to the Kraft Family Blood Donor Center at D-F. The process for "collecting" his T cells is called apheresis. His blood will leave one of his arms, pass through a centrifuge machine which will separate out and collect the T cells. The remaining blood will be reheated to his body temperature and returned to his other arm. This will continue until they have collected enough T cells for 1 or 2 infusions. I believe the process will take 2-3 hours. Extra T cells can be frozen and saved for future infusions as needed.

On Tuesday Mazie will receive the infusion. I believe it takes about 15 minutes. Mazie will continue to go to D-F every Tuesday and Friday, when they will analyze her blood and give infusions of blood and platelets as needed. Potentially she will have some Host vs Graft symptoms. This will be good, as it will mean that the T cells are doing what they are supposed to do, but will have to be closely monitored and controlled with medications.

If you would like to help, please consider donating blood or platelets. Mazie and thousands of others in her situation require frequent infusions of blood and platelets. Call your local Red Cross Blood Donor center. In Boston, call the Kraft Family Blood Donor center, 617-632-3206. I will be donating platelets on Monday while Zeke is having his procedure. I believe it takes about 2 hours and parking is free. I will be able to tell you all about it.

Meanwhile, Mussie has helped me get my fund raising for the Pan Mass Challenge (PMC) started. The PMC is a 2 day bike ride fundraiser for Dana-Farber. EVERY penny raised goes to D-F. I will travel 163 miles over 2 days and am hoping to raise $5,000.00. Click on following  link to support my ride:

http://www.pmc.org/profile/CS0272

The care and attention Mazie has received at D-F has been exceptional. This is a small way I can give back. Thank you all for your continued love and support, and for accompanying us on this journey.

--cyn

As always, the news is "confusing"

Today was 3 weeks after the beginning of the last Chemo cycle, and Mazie's #'s are coming up. Although not normal, she is making both red and white blood cells and platelets. In fact she did not need any infusions today. Unfortunately, blast cells are also up. Her team has met and came up with some options for going forward.

Option 1. Another round of Decidabine out-patient (starting Tuesday 3/20 and running for 5 days) followed by DLI in 2 weeks. The thinking here is to strike with the DLI when her blast cell count historically has been it's lowest. You will recall, ideally, the DLI ( and the previous Stem Cell Transplant) would best be done when she is in remission. No blast cells. Thus far, Mazie has not been able to achieve remission.

Option 2. A stronger round of in-patient Chemo, resulting in a 4-6 week hospital stay.

Dr Stone suggested option 1 has about a 5% chance of success. The chances are slightly higher for option 2. "Success" in this case would be total remission. Success however, can be defined in more ways than one. The Decidabine is clearly doing something, just not enough. And proceeding with option 1 does not preclude option 2 at a future date. And, most importantly, it buys time. Another potential therapy would be another transplant from another donor. This is only an option one year after the previous transplant. July 20, 2011.

So Mazie has decided to proceed with option 1. She is very optimistic. She feels good, and looks good, and is looking forward to a "Three Philosophers" beer to celebrate St. Patricks Day.

Here's how you can help....

Donate platelets. Mazie and thousands of patients like her require frequent infusions of blood and platelets. Call your local Red Cross blood donation center to find out where. In Boston, call the Kraft Family Blood Center at Dana-Farber. 617-632-3206 or visit www.dana-farber.org/blooddonation. If you donate 3 times at the Kraft center you are invited to join the world wide bone Marrow Donor Program. Although you may not help Mazie directly, you will be helping others in her position. (and I think they give you ice cream)

Meanwhile, I have hit a wall. Although my broken left leg appears to have healed, I'm still unable to walk. I continue to have a good deal of pain in the right leg. I see another Dr on Thursday to determine if there was another, undiagnosed problem there, or just stress from being on crutches, or what??? As you can imagine, I am past the limit of my patients.

As we scramble to "strike the winter set", we are enjoying early Spring weather. Snow Drops and Crocus are blooming, and the spring "Peepers" are peeping at night. Abby is wallowing in all the glorious mud!!! We are all looking forward.

Next Step

Mazie's infection is pretty much cleared up. She did however, start to experience "bone pain" again on Monday (February 13), and it has escalated quickly. In the past, this has meant more cancer present. So I was prepared for bad news yesterday when we got the results of the biopsy. However, the news was good! The biopsy from early January showed 30% cancer. Yesterdays results showed approximately 15%. (These are not "hard" numbers. Her marrow tends to be fibrotic, and the % is based on cellularity which I believe means # of cells present, which was very different in the 2 tests.)

At any rate, Ilene was pleased with the result, and feels the 10 day chemo cycle was successful. However, Mazie is not yet at a point where she can proceed with the DLI. Her team has determined another 5 day cycle of Decidebine is the next step. So Tuesday (February 20) - Saturday we will go for chemo. Then we go back to the holding pattern, visiting D-F Tuesday and Friday for blood analysis, and infusions as needed. After about 3 or 4 weeks (maybe mid March??) the team will again look at the #'s and determine if it is time for DLI. Not sure if this will require another biopsy.

My broken bones appear to be healing. I have no pain at all. I see the Dr. Wednesday and expect to hear all is well. I'm chopping at the bit to get back on the bike. I have committed to doing the Pan Mass Challenge (2 days before my accident) so I'm anxious to get back to it. I will let you know how you can sponsor me as soon as I figure it out. :-) Thank you Robert, Adrienne, and everyone else who has helped with food, shopping, transportation, Abby walks and visits while I have been recovering. And thank you all for your continued love and support as we continue down this path. Happy Valentines Day!

--cyn

Here We Go Again

We have been in a holding pattern, going twice a week to D-F for labs and infusions as needed, so let me bring you up to date. We are now five weeks post Chemo and the counts are slowly bouncing back. Unfortunately Mazie had a very painful infection in her mouth which prevented her from eating and talking for quite a while. She is however, bouncing back from this also. On Friday it is time once again for a Bone Marrow Biopsy. (Mazie's words "how can we have Valentines Day without a Biopsy"?) The goal is to determine % of cancer present in the bone marrow. This will determine whether we proceed with DLI, or more Chemo. And, as in the past, we will not get the results for a week, or around the 17th.

Meanwhile, to keep things interesting, I managed to fall January 22nd and break my left leg (both Tibia and Fibula) and right thumb. Good move right? None of the breaks are serious, but no weight bearing for 4 weeks (February 22). Robert has come twice to help out, and Adrieen has been driving, shopping and cooking for us. I am finding it difficult to channel my "Zen" self. Two more weeks!

Happy Ground Hog Day everyone. Six more weeks of winter, or maybe the beginning of winter? Thank you for your continued support, and we will keep you posted.

--cyn

Happy Birthday Mazie!

On January 6 we celebrated Mazie's 23rd birthday. Her friends arrived to a back yard bonfire. It was a relatively mild January evening. A wonderful group drifted in and out till dinner was served around 6:00. Mus and I left them to it, but we hear a good time was had by all. The highlight of the evening was the launching of the lanterns!

This is something Mazie had been telling me about( I think she did it while in Seattle??). She was trying to get me on board, and even trying to find instructions for me to make these. I was very hesitant, not only because it sounded like a big project, but I pictured setting all of Carlisle on fire! Sensing my hesitation, Mazie took matters into her own hands.... From her infusion chair at D-F, she found them on line, and ordered them. Amazon Prime. They arrived in 48 hours and cost less than 2$ each. You gotta love Amazon Prime. Having seen the pictures, we will definitely do this again.

The 10 days of Decidabine went pretty well. She has not had too much nausea. She is back on strong pain medication so she can't drive for awhile. The disappointing development was she has had to get another pick line (yesterday). Her veins just are not up to the frequent pokes and when she gets to the DLI, it requires a large diameter needle. She is a bit bummed by this, but agrees it is the best course.

As for the road forward.... we have a period of watch and see. Watch for the blood counts to improve, and the blast cells to decline (they are declining). If the #'s are in favor we proceed to DLI. If not more Chemo may be necessary.

Thank you to everyone who joined Mazie for her birthday, some traveling considerable distance. She had a great time! And thank you all for continuing to accompany us on this journey.

Happy New Year to you all

A very mild new year here. 50 degrees on January 1. We had a great Christmas. Zeke was here for a few days, and Mazie had a steady stream of visitors since a lot of her friends were in town for the holidays. On the 30th, Mussie and Mazie met with Dr Stone to determine the path going forward.

You will recall, Mazie had a biopsy on December 23. She asked me to video the biopsy. Zeke has posted this for anyone who might like to see this procedure, but be warned... this is a pretty intense procedure and some (perhaps most) people will find it difficult to watch. That said,

http://youtu.be/kMblV1X9iGE

The biopsy showed a considerable amount of cancer present, so more chemo will be necessary. Mazie will start a 10 day cycle of Decidabine tomorrow, January 3. The goal is to get the % of cancer present low enough to proceed with the DLI (Donor Lymphocyte Infusion). You may recall, the 10 cycle of Decidabine is what was most successful in the past. If this works the DLI would follow in about 2 weeks. Although another round of chemo is daunting, Mazie is happy to be home, receiving the Chemo as an out patient. Mazie feels pretty good most of the time. She is low energy and tends to spike a fever most evenings between 5 and 9 p.m. This usually only lasts a few hours. Her hair has finally returned and I think it is a few shades darker this time.

So we are back to waiting and watching to determine what the next step will be. As always, we will let you know when we know.

Meanwhile the registration date for anyone considering the Pan Mass Challenge (PMC) is approaching. Registration for first time riders is January 17. So far we have 4 riders ( Mary Ellen, Max, Trevor, and I ) who say they are going to do this. I'm sure Mary Ellen, Max and I will only catch a fleeting glimpse of Trevor as he leaves us in the dust. I think the quota for riders is full within a day or two of the registration date, so if you are still on the fence you should decide by the 17th. I'm happy to try to answer any questions you might have or feel free to check the PMC website. It's quite good. You have to commit to a day/ route when you register. I plan to do the 2 day ride starting in Wellesley.

In other news... in early December Mazie gave up waiting for a Subaru, which she had been waiting a loooong time for, and bought a Mini Cooper instead. She is very happy, and can at times, be seen motoring in "Emmet" around town.



A very Happy 2012 to you all,
--cyn

An On Going Process

We just got home, so I will try to get this down while it is still fresh. Mazie's blood counts have gone down since Monday and the % of Blast cells present has gone up. Not dramatically but up. So the course of action is still unclear. I mentioned all immune suppressant medications were stopped on Monday, and there is a slim chance that alone will be enough. It takes about a week for those drugs to leave her system, so we will not know till next week.

They took a bone biopsy today to get an accurate reading of how much cancer is present. Mazie had me film it for those of you who are interested. We will get results in about a week. We go back next week Wednesday and Friday. On Friday they will do an Echocardiograph. All these test will help to determine the next step. If it turns out to be DLI (Donor Lymphocyte Infusion) - which I think is the most likely scenario - this would happen in about 3 more weeks (she has to have been off the immune suppressants for about a month before they can do this). There is also a chance she will need some Chemo before the DLI which would push it back more.

The DLI is similar to the stem cell transplant procedure. Zeke's blood will leave one arm, pass through the centrifuge, but this time they will extract T Cells, which are kick ass white blood cells. Then the blood is returned to his other arm. Mazie will receive the T cells, which will attack the cancer. This will all be out patient. They collect more than they need so some can be frozen in case they need to repeat.

So, we will not be going to Virginia. Zeke will come here. Mus went out and got a small table top Christmas tree today, and because we were prepared to be in the car all day tomorrow, we are pretty much ready for Santa. Meanwhile we keep watching (and hoping) for mild Host vs Graft disease symptoms. These include rash, fever, diarrhea. Although unpleasant this would mean the stem cells are attacking the cancer.

We wish you all a Merry Christmas, Happy Hanukkah, Happy Solstice etc. This is an on going process, and we will keep you posted. We will post a link to the video when we get it. And, always, thank you all so much for your love and support.

--cyn

A Swift Kick to the Gut

There is no easy way to say this, so I'll just say it. Today (December 19th) we learned 9% of Mazie's blood are Blast cells. You will recall, blast cells are malformed blood cells and are an indication that Leukemia is present in the bone. We will go back on Friday, the 23rd to meet with the team and determine what the next step is. Meanwhile all immune suppressant medications have been stopped. Here are some possible scenarios...

1. Stopping the immune suppressant medication will allow the new stem cells to attack the Leukemia more efficiently.
2. Most likely there will be a DLI (Donor Lymphocyte Infusion). This is an infusion, most likely from the original donor (Zeke) designed especially to attack the cancer. It is not as involved as the original transplant and would occur in about 1 month. If the % of blast cells present in the blood escalates, more chemo may be necessary before the DLI.
3. It is possible another transplant may be necessary.

If everything is stable on Friday, we could continue with our plan to go to Virginia. We will not know anymore till after our meeting with the team on Friday. Obviously, this was all very hard to learn. We will attempt to not look too far ahead, and take this one step at a time.

at the request of my aunt Les, i've decided to start posting some of the poetry i've written throughout my journey.
I don't think I'll post them in any particular order... so they wont necessarily be chronological.


My apocalyptic
dreams are always sort
of peaceful-
amongst the chaos.
The flames roar
in silence.

A hand held
mine but I couldn't
feel it.
Tubes wrapped
around my veins
I saw you in
the mirror-
and reached out
to touch you.
Our hands moved
together.

At night
I lay in fever
and have dreams
of the apocalypse-
but they're always sort
of peaceful.
Amongst the chaos.

be the match

Greetings!

I know a lot of people were wondering about how to be tested as a possible stem cell donor back in January. As good fortune would have it, my brother was a perfect match- but thousands of people are not so lucky. During this season of giving; I encourage you to become a part of the bone marrow registry, donate platelets, or become involved in your own way.

http://marrow.org/Home.aspx

I am so thankful for the support my family and I have received throughout this process. I am entirely convinced that the enormous web of love and positive energy that reached across the country, and all the way to australia, is what kept me going. In the words of Paul Simon "this is the powerful pulsing of love in the vein".

"Happy Thanksgiving" To Everyone!

As I sit amidst the mess that will become Thanksgiving dinner, my thoughts keep wondering to all I have to be thankful for (sorry, it's going to be one of those posts).

First, Mazie is doing so well. As hard as we try to understand how this transplant process works, I'm still left with the step... "and then a miracle happens". And it really feels like a miracle has happened here.

Second, we are so so lucky to live close to Dana-Farber. They really are at the top of the field there. They make miracles like Mazie's happen every day.

I am so thankful that we are all together today. Zeke and Katie drove up from Boston yesterday. And Robert is driving from Vermont this morning, and yes there was another snow storm. It seems to be a prerequisite for Robert to make the drive. Friends will arrive this afternoon to share the day with us.

Finally, I'm so very thankful for all of you, our extended family and friends. You have stood by us this past year. Fed us, walked Abby, hugged us, followed our progress, and supported us in more ways than I can recount. Thank you all so much.

The bird just went into the oven, and I am off to iron tablecloths and set the table. Happy Thanksgiving to you all!

--cyn

Lots of excitment here...

First of all, day 100 has come and gone! Saturday, 10/29. Mazie observed the day by having take out pizza for lunch, and Chinese take-out for dinner. That alone would have been exciting, but the icing on the cake was a big October snow storm! We were slipping and sliding home with the Chinese food. We enjoyed our Mo shi pork while we listened to the trees snapping outside, and waited for Robert to arrive. Yes, once again, Robert drove down from Vermont in the middle of a huge snow storm. Power was on and off for the next 24 hrs. as 5 inches of heavy wet snow piled up outside.

Sunday, 10/30 Mazie, Robert, Abby and I headed off to VA at the crack of noon. We realized it has almost been 3 years since Mazie has been here. The weather has been cool but beautiful. It is peak fall foliage, and really quite beautiful. Mus flew down Monday and joined us. It's so nice to be away, and especially nice to be here. We plan to do a whole lot of nothing in particular, and will return late Saturday.

Lots of excitment here

Rooftop Wilderness

I saw this picture
of New York City
where nature was
fighting back.
Claiming a rooftop
right in Manhattan
amidst all that metal
and stone.
there were vines, and plants,
and a big healthy tree
twisting their roots
between the bricks
and climbing toward the ground.
I imagine a city
covered in brambles
with a floor made
of dirt.
where you look
out of your apartment
window and see a
deer running through
the brush.

No news continues to be good news

Sorry for the long delay since the last post. The truth is, Mazie is doing so well, we have just gotten busy with other things. So let me bring you all up to date. We are now visiting Dana-Farber once every 2 weeks (we are here now, in the waiting room). All results of Mazie's blood tests continue to show improvement. The "100 Days" is over at the end of October. In anticipation of relaxed guidelines, I went to Virginia in September and gave the house a thorough cleaning. Meanwhile, some restrictions have already been relaxed. Maize is allowed to go to a movie, if it is not crowded. She is also allowed to have moderate social contact such as some shopping. This has greatly relived the cabin fever.

Robert came to visit and they bottled their Ginger IPA. They plan to brew Oatmeal Stout next. Zeke and Katie came for the Columbus Day weekend, and Mus and I took that opportunity to go to Nantucket for a couple days. It was a break greatly appreciated by all.

We are just back from seeing Amy. There are no "L's" or "H's" in the third column (meaning none of the counts are considered "high" or "low"). In other words, they are telling us Mazie is "normal" (but we all know better :-). And they don't want us back for 4 weeks!!! Diet restrictions will relax as of November and the really good news is we have clearance to go to Virginia!!! We are planning to go the first week of November.

So you can see, all is well and we are all busy. The fall color is beginning to show and it is finally a more seasonal temperature. Maize has been busy settling into her rooms here and making them feel more homey. She is also looking at some online courses for the winter. We are working our way through the large stack of books and videos everyone lent. We would like to mail them back, but unfortunately not all are labeled. Please let us know if you lent something so we can be sure to return. I'm afraid we were not keeping records at the time.

The Dr.'s also request, if you plan to spend time with Mazie this fall and winter, please get a flu shot, and please remember not to visit if you have any signs of cold or flu or know you have been exposed.

There are currently 3 riders committed to doing the PMC, and about 6 who are on the fence. If you have any questions you can e mail me or visit the Pan Mass Challenge web site. I will alert you all as soon as I learn the registration dates. As always, thank you to everyone for your continued love and support.

As Irene rages outside...

All is cozy inside our glass house as Irene rages outside. So I will take this opportunity to update you all. First, you may have noticed, the e mail "prompts" that indicate there is a new blog post have stopped working. We don't know why, and we are not sure we will be able to get it working again. In the mean time, you can go to the blog anytime to check for updates. I have my IT guy (Mus) working on it.

Mazie continues to do well. We are down to one visit per week, usually Wednesday. This week her Platelet count went from 22-50. While this is still considered low, it more than doubled in one week. She looks good, feels good, and is eating REALLY well (we attribute this to Zeke's cells :) The Dr's are very pleased with her progress. She continues to be low energy, and has some cabin fever. Quarantine continues for another 2 months approximately.

Next week they will begin "Chimerism" testing. This will show how many of Zeke's blood cells are present vs how many of her blood cells. I was surprised to learn they expect 90% donor (Zeke) by next week. I thought it would take much longer than that. If it is not 90%, they will tweak her "Host vs Graft" medications.

We are very pleased, and relieved with Mazie's progress. We are so grateful for the care she has received at Dana-Farber. It truly is the leader in Cancer research. We are so fortunate to live close to this amazing resource.

After Mazie's diagnosis in December, I gave up my gym membership. There just was no time. And, as you can imagine, I gained weight. This spring I started taking little bike rides when a window of time appeared. It was quick, relatively easy. No time wasted in preparation or travel etc. Well I've stuck with it, ridding 3-4 times a week, and somewhere along the way a crazy notion occurred to me. "The Pan Mass Challenge"!

In brief, this is a 1-2 day supported bike ride fundraiser for, Dana-Farber! (Google it. There is lots of information) I really would like to do something to "give back", for all they have done for us. Here's the kicker, this is not a casual bike ride. The 2 day event is 163-192 miles depending on where you start. And each rider commits to raise $4200.00. It takes place in early August 2012. Registration opens in January.

I'm deciding if this is something I can actually do-- Wellesley to Provincetown is all downhill right??? And I'm wondering if anyone else might like to do this with me--"Team Mazie"? I welcome your feedback on this. The photo gallery at the Pan Mass Challenge web site shows several people wearing T shirts that say "Just Commit, Figure it out Later". I'm about to commit!!!!

Meanwhile, Back at the Ranch...

While Mazie was in the hospital, a huge effort was underway to get the house ready for her return. A thorough house cleaning was required. All the carpets and upholstery had to be cleaned. All of Abby's dog beds had to be cleaned. All house plants had to be removed. All "clutter", that could harbor dust or mold had to be cleaned up. A big effort, but also satisfying. Hopefully the house cleaning bug will stay with us for a few more weeks :) Now if we could just get Abby and Millie to wipe their feet...

We can not have plants in the house for about a year. Right now, they are all outside and doing well. By mid September I will be looking for "foster homes". Anyone interested in fostering a plant till around next May, please let me know.

So Mazie has been home, "Post Transplant", for 3 1/2 weeks now. At first we though she was going to get by without loosing her hair. But last week, it pretty much all fell out. Normally hair begins to return around 3 months after the end of Chemo, so 2 more months from now. Also, post transplant she was receiving a daily injection of Neupogen to stimulate stem cell growth-- this is the same shot Zeke was receiving prior to transplant. Well the Neupogen did it's thing, and Mazie's counts went steadily up. In some cases doubling in 3 days. Amy says this is not just the shot. The shot only intensifies or speeds up what is already happening. In other words, her numbers would not have gone up so steadily if she was not already making some stem cells. This is all really good. It was decided to stop giving the injections. As a result, the numbers are slightly down again but this was expected. They are still higher than before this all started.

Mazie continues to feel pretty good. No Nausea, no major pain, mouth sores almost gone. Her appetite is really good. She is low energy, and feeling a bit "blah", but no serious complaint. She is working her way through some pretty bad television, including "Keeping Up With The Kardashians". I'm afraid this could cause irreparable damage!!! At first we were going to Dana-Farber 3/week or more. We are now going about every 5 days. M, F one week, W the next week etc. So there is actually a little time to do other things. Mazie is brewing some beer--Ginger IPA. I am sorting through all my many abandoned projects, possibly I'll knit a sweater.

At about one month post transplant, next week, they will begin to monitor # of Zeke's cells present vs # of Mazie's cells present. So we will have a new set of #'s to learn about and watch. Mazie continues to be under a semi quarantine. She can not be out in public at all. Visitors here are welcome, especially on nice days when it is possible to be outside. Visitors inside are required to wear a mask. I anticipate some serious cabin fever. But right now, everyone seems pretty content.

Thank you all for your continued support and encouragement. We really do appreciate it. Please do not bring food at this time. Mazie has many dietary restrictions, so for now I will be doing all the cooking.

Continuing to feel very positive!

--cyn

Stem cells are in and Mazie is home

Sorry for the long pause. First, let me say all is well! The long pause was just the result of being so busy. So let me back track a bit and bring you all up to date...

Mazie entered the hospital on 7/14. She received Chemo for 4 days, 7/15-18. Meanwhile Zeke was receiving daily injections of Neupogen to stimulate his blood cell production. The transplant took place on 7/20. Zeke arrived at Dana-Farber at 7:00 a.m. He was hooked up to a pheresis machine. Basically it's a centrifuge. His blood left his body through an IV in his left arm, passed through the pheresis machine, and re-entered his right arm after being heated back to his body temperature. This system has been in use since the mid 90's. Prior to this, stem cell harvesting required bone biopsies--remember those? basically a core sample drilled into the hip bone and removed. But to get enough for transplant required around 200 biopsies! a 3 hour process!!! What a relief this new system is.



The amount of blood outside Zeke's body at one time was around 200 ml. All his blood passed through the machine 3 times over a 5 hour period. The stem cells were deposited into a bag at the top of the machine. Approximately 172 ml were collected. The goal was 5 million stem cells. He was done around 2:00 in the afternoon. Then the cells were taken to be counted. I have no idea how they do that. If the 5 million was not achieved, the process would be repeated the next day.



Meanwhile, Mazie was "chillin" in her room at Brigham and Women's Hospital. She was quarantined, not allowed to leave the "pod". Thankfully Rachel was there all day "chillin" with her. The actual "Transplant" is kind of a non event. It's an IV infusion that last about 30 minutes. Mus and Zeke headed home after a very long day for both of them. And Mazie, Rachel and I waited, and waited, and waited some more. I guess it takes a really long time to count to 5 million. The Stem Cells finally arrived around 9:30 p.m. Mazie was asked if she would like to have a Chaplin bless the cells. She said yes, and a very nice young women came and delivered a very wonderful blessing and prayer. The IV was started, we all chatted, and before we knew it, it was done. Mazie felt a little "flushed" near the end but this is normal. By 10:30 we were saying goodnight and heading home.



It was determined there were more than 5 million stem cells, so a repeat performance was not required the next day. "Way to go Zeke"! And amazingly Mazie was free to go home the next day, 7/21. The only condition was, she needed to have an injection exactly 24 hours after the end of the transplant- 10:00 p.m. So Mus picked her up and they got home around 11:00. And we had to be back at 8:00 the next morning. Oh well. It beats being in the hospital. We continue to go to Dana-Farber 3/week, and the visits pretty much take all day. But the really, REALLY, good news is that Mazie is feeling pretty good. Better than she has felt in months.

So a really brief outline of how things are supposed to progress.... Slowly, over time, Zeke's cells will establish themselves and take over. They will actually monitor the# of his cells present vs the# of her cells present. The goal is for his to "replace" hers, and in the process finish off any residual cancer cells. Meanwhile there is a very fine balance of drugs required to avoid host vs graft issues. When all is done, her blood type will change to his. She will need to get all her childhood vaccinations again. She will have a brand new immune system. Our visit today revealed her white blood count went from 900-1700 in 2 days!!! She is receiving (from me!!!) the same shots Zeke received to stimulate blood production. The side effect is some achiness in her bones.  

Going forward, Mazie's immune system is basically nonexistent right now. She can not go out in public at all really. When we go for Dana-Farber visits, she wears a mask and gloves. She loves visitors, but if you visit inside the house you will be asked to wear a mask. Outside, in our yard this is not necessary. Thankfully it's the right time of year for that. When you visit, a hug is not a good idea. Do not visit if you have any cold or flu symptoms, or have been exposed to anyone with those symptoms. Thank you to everyone who has brought us food over the last few weeks. For now, please do not bring food. Mazie's diet is highly restrictive. Too much to try to communicate. So for now, only I will be cooking. No flowers or plants either. Sorry

Once again, thank you all for your continued love and support. This really feels like a new chapter.

--cyn

In the hospital as planned

Mazie is in the hospital now starting the stem cell replacement process as planned. She is in a cozy room at Brigham & Woman's, throughout the process. Zeke comes to the Dana Farber  hospital daily to get a shot to loosen his stem cells, and then comes over to Brighams to visit.

Meanwhile, Mazie is receiving chemotherapy daily leading up to the 20th. On the 20th, Zeke will go for a 5 hour session at Dana Farber for stem cell extraction, which will then be run over to Brighham's for same-day implant into Mazie. The implant process is simply an IV transfusion. Not very dramatic unless we can line up the Boston Pops to play the theme to Star Wars while the IV drips. We're working on that. 

The precautions to ward off infection are up a notch or two already. Mask, Purell, gloves, all items entering room in zip lock bags having been previously disinfected. So, for now, visitors are not practical, except for immediate family.

After the transplant, nothing happens suddenly. There is no magic "it worked" moment. They give Mazie an inhibitor that slows the rate of graft (Zeke's cells) absorption to host (Mazie's) cells. As things unfold,  they reduce the amount of inhibitor, based on measurements.  And they continue to measue, the next 100 days being most critical.

Barring complications, her stay in the hospital could be quite  short after the transplant. As always - step at a time.

Above is a picture with Mazie wearing a mustache, her buddy Tahlia gave her. Mazie's master plan is to put the mustache on the morning after transplant, before her doctor and team do their rounds. When they come in she will point to the mustache and ask, "Is his to be expected"?

Two climbers are better than one

So we definitely have a confirmed stem cell transplant date :)

Mazie’s Leukemic cell count is confirmed to be low enough so they would like to proceed with a stem cell transplant process, with Zeke’s blood cells, beginning July 14th. Here’s what we know so far about the process.  

• Zeke, who was here this weekend with girl friend Katie and friends,  will be staying a couple of extra days to get a pre-game physical on July 6.  It was just dumb luck that he was in town. (See above photo of their meticulously laid out rock climbing equipment )
• On the 14th Mazie gets admitted, in-patient, to Brigham and Woman’s for a round of chemo  preceding the transplant on roughly the 20th.
• Zeke, also comes back to down on the 14th at which time they will,  out-patient, give him shots over a period of 3 days designed to boost his stem cell count. 
• Then they’ll hook him up to this whacky machine to extract the stem cells for delivery to Mazie on the 18th. He’ll likely be pretty tired after this ritual.
• On the 20th -  they will do the actual transplant.  Zeke’s blood will be the new sheriff in town. 
• Zeke stays around twon for a couple of more days in case they need more stem cells ( We need more cow bell!!)

The entire process for Mazie is likely to be 10-14 days in-patient. We know little about what the process looks like afterwards.

On the 11th we’ll head in to the hospital to meet the transplant team who may provide a bit more color. It’s an entirely different crew than the folks we have been working with. 

So that’s the scoop as we know it.  Thanks to all who have been tuning in,  and we’ll continue to keep posted the best we can, as our ascent continues…

Fondly,

Mussie

I'm tempted to say "Cowabunga Dude"!

The reason you have not heard from me is that we did not get results on Thursday. They just were not ready yet. We expected to here something over the weekend, but we didn't. So we arrived, very early this morning for the results.

Meanwhile, Mazie's Blast count, which was way down after the last round of Chemo, has been steadily climbing. Dr Stone had given us a "magic" number at our last meeting. If the bone marrow count is below 20%, they would recommend transplant. Her blast counts are now above 20%, so we were prepared for bad news. What we were not prepared for was a report that her marrow was less than 5%!!!

Here's the kicker. This result is not confirmed. It was sent in an e mail to Dr Stone. We waited all day for confirmation, which did not come. But, it kinda looks like Mazie is headed for transplant. "Cowabunga Dude"!

So they sent us off for Echocardiogram, to test her heart. This will help to determine which transplant procedure is best for Mazie. Last week we learned there are at least 3 options. So Mazie's team will access all this information, and we will return Thursday to here what the plan is.

If we sound a bit "guarded", it's because of this business of the results being unconfirmed. All hell will break out when it is confirmed. And we will of course let you all know.

Here in lies the answer...

A long and difficult day yesterday. We got home at 7:30. Biopsy went well. We will not have results till Thursday. Meanwhile, Mazie is very sore. 2 biopsies in 8 days is a lot. We will let you know, when we learn more. Thanks for the dinners that have come our way, and thank you all for your continued love and support.

No News

Mazie had the biopsy on Monday 6/3. The goal of the procedure is to, (a) get blood directly from the marrow, (b) get a piece of the marrow. A hollow, treaded tube is first tapped, then screwed by hand into the hip bone. After the first attempt, there was no blood. A second and third attempt, each with slightly larger diameter tubes, also were not able to extract blood, but did retrieve a piece of "marrow". Needless to say this is all very painful.

Yesterday we were prepared for the results. However when we saw Dr Stone and Ilene at noon there were no results yet. We went to other appointments and came back at 3:00. Still no results. We did however have an opportunity to discuss the options with Dr Stone and Ilene.

Basically they gave us a number, a percent of cancer present in the bone. If her test comes back under this number, she will go to transplant. If it is higher she will have more chemo. And once again, there are a couple Chemo options. But no number came and we went home not knowing, with a plan to return Monday for the results.

Ilene just called (Saturday morning) to let me know the test was inconclusive. Basically they got bone and no marrow. This could be why there was no blood. So believe it or not, Monday morning Mazie has to repeat the biopsy. And once again, we will not get results till the end of next week.

June 10 Here's the Latest...

The last 2 weeks we have been going to Dana-Farber twice a week, Monday and Thursday. The 10 day cycle of Decitabine really wiped out the good along with the bad, so Mazie has needed platelets, blood, etc. The good news is her pain has receded considerable. In addition, the "numbers" look good. We have learned not to get too excited by this. The % of blast cells present is just an indicator, and in my opinion, a very fickle indicator. You may recall, the only real way to know is the bone marrow biopsy and Dr's think it is time to take another look.

So, Mazie will have a biopsy on Monday. You may also recall, this is somewhat painful, and we will not get results for a few days. Probably not until we go back on Thursday. The possible results are, (1) you are ready for transplant, (2) you made progress but we need another 5-10 days of Decitabine, (3) This is not working and we need to try something else.

Meanwhile Mazie has much less pain. She is very tired, and is having some nausea and loss of appetite. We are trying some new drugs to address this. She had acupuncture last week and will have a massage next week. Hypnotherapy did not seem to be a good fit for her. The best therapy seems to be visits from her friends. It was great to see Rachel back on this continent! And thank you to Mel for visiting for a few days, satiating us with good food and wine, and spending a marathon day of thunder storms with Abby (neurotic pup) while Mazie and I were at Dana-Farber. Looking forward to seeing Zeke and Katie tomorrow.

We will continue to go twice a week for now, and will keep you all posted as to Mazie's progress. Thanks for all your e mails etc. Sorry if we have not responded to each of you directly, but we do greatly appreciate your well wishes. Thank you all so much :-)

May 1-20 "Mazie enjoys ice-cream during infusion"

A lot of water has flowed under the bridge since the last post. I will try to re cap the highlights. On the 12th we arrived at Dana-Farber expecting a bone marrow biopsy. We were in the Infusion room, waiting to to see Ilene. When the results of the lab work were in, Dr Stone and Ilene came to talk to us. The news was not good. Basically, the lab work showed it was highly unlikely Mazie was ready for transplant. Therefore the biopsy was not necessary. Needles to say this was very disappointing.

They presented us with 4 options.

1. Start another 5 day round of Decidabine, although it did not appear to be working.

2. Proceed with biopsy and transplant, although the likelihood of success was greatly diminished due to amount of cancer that appears to still be present.

3. Be admitted to hospital for 4-6 weeks in order to receive a different Chemo therapy. (this is the plan that Dr Stone seemed to be recommending)

4. Search for a clinical trial. (this seams unlikely due to damage to heart value)

None of these options sounded that good. It was all pretty upsetting. Dr Stone left to confer with Dr Soifer, the transplant Dr.

About an hour later, they returned with a 5th option....

A particular study had shown very good results in 10 day cycles of Deciabine, even in patients who had not had great results in the shorter, 5 day cycles. And it can be administered out-patient. It seemed like a "no brainer" to us. So it was decided, Mazie would start a 10 day cycle on May 16. This will be followed in 2-3 weeks by a bone marrow biopsy, and/ or another 10 day cycle as needed. And we still have the other 4 options to fall back on.

On the 16, when we were ready to begin, we were surprised and confused to learn Mazie's lab results were considerable better than they had been 4 days earlier??? Blast cells down by 30%! This is before receiving any Chemo??? We have stopped thinking we understand this in any way at all!!!

On Wednesday, 5/18, we say the Cardiologist, Dr Nohria. She made some adjustments to Mazie's heart medications. She is optimistic that the heart will repair itself with time.

Today was day 5, we are half way. So far not too bad. Mazie is very tired, and has a good deal of pain. We don't fully understand this but, the pain is neurological, based on loss of bone marrow. Basically, her large bones "hurt"! Upper legs, hips and shoulders. We have not yet found an adequate pain management program. We are investigating hypnotherapy, and acupuncture, but it all takes time. Dr Stone also said it is not uncommon to spike a fever and end up in hospital for a few days on these longer Chemo cycles. So far we have avoided this.

Meanwhile Mazie's aunt Leslie came from Minnesota, and uncle Craig came from NC for the weekend. It was great seeing them both. And Amanda came Wednesday and left this morning. Thanks to all of you, Mazie loves visitors.

The last 2 weeks has been an emotional roller-coaster. But now that there is a plan and treatment has started, it all feels more manageable. 5 down, 5 to go. And the week after tends to be a bit rough, but we are all back to feeling very optimistic.

Here is the latest...

So a lot of time has passed since I last posted, sorry about that. Here is what has been happening...

April 14 we had our regular, thursday meeting at Dana-Farber. Ilene was on vacation so we saw Dr Stone. We were really disappointed to learn the percentage of blast cells present in the blood had gone up. There was some discussion of starting the next round of Decitabine right away. Mazie opted not to do this because Amanda was coming for the weekend and she did not want to be at Dana-Farber every day. So, we had a great weekend and the Chemo started on 4/20. For some reason that was not totally clear to me, but maybe having to do with Patriots Day/ Boston Marathon, our appointments were really early! So Wednesday-Sunday we were up at the crack of dawn to walk Abby and get into downtown Boston.

All went well. (By the way, % of blast cells was down again slightly by wednesday. Before Chemo started??? I've stopped thinking I kinda understand all this.)

We were home most days by noon. Mazie was tired but otherwise did very well. Then Monday night, 4/25 Mazie spiked a fever. We were instructed to go directly to Brigham and Women's Emergency. The idea of spending hours in Brigham's ER (done that) was daunting. We talked them down to a 7:00 a.m. arrival at Dana-Farber. So Mazie and I were off again at the crack of dawn.

It was determined she needed to be admitted for observation and tests. She was really bummed, and no longer feeling sick. They kept her 3 days, tested her for every infection imaginable, gave her antibiotics, anti fungals, and anti viral drugs. She had fever both nights she was in the hospital. In the end, all her test were negative. She came home Thursday evening 4/28.

No Fever since she has been home. Biggest complaint now back and leg pain. We are trying to stay on top of this so it does not get too bad. Zeke is here for the weekend. The weather is beautiful. Spring happened over night this past week. Trees are blooming. Small leaves are visible. We will go Dana-Farber again on Thursday, Cinco de Mayo. On the 12th Mazie gets to have another bone marrow biopsy, good times! This will let us know the plan going forward.

Weekend Update...

Mazie and I spent the day at Dana-Farber on Thursday April 7th. Here's what we learned... Mazie's counts are slowly but surely improving. Ilene put up a spread sheet where we could compare about 6 weeks worth of information. Blast cells are still present, but they are steadily declining. At the same time, all the "good stuff" is steadily improving.

So the decision was to "stay the course". Mazie will start another round of Chemo on either the 20th or 27th, we were a little confused about the date. Although the thought of yet another round of Chemo is daunting, it was easier to take this time because of all the good trends. Mazie continues to look and feel well.

A couple weeks after the next round (about a month from now) she will have another bone marrow biopsy. You may recall, this is the only true way to determine how much cancer is present in the bone. This will determine if she is ready for transplant.

So we find ourselves in a holding pattern, but spring has finally come to Carlisle. As of yesterday the snow is gone from the yard (still a large pile next to garage). And last night we heard the spring peepers for the first time. Abby is happily wallowing in the mud, and tracking it inside, and we have turned on the outdoor shower. Change is in the air.