Dear Family and Friends,

We've experienced some difficulty keeping everyone current with Suzie's progress via the blog: some are unable to find the site, some are unable to log on, some have been unable to post comments and no one is aware that an event is taking place unless curiosity leads them to visit the site.

We've decided to close the blog and create a website on CaringBridge, a free, nonprofit web service that connects family and friends and facilitates their ability to share information, love and support during a serious health event. When an event takes place in our lives that is of significant joy or concern, we will update the journal on our Caring Bridge website. The beauty of CaringBridge is that they notify those who register whenever a journal update is posted. This notification will contain a link to our website, thus making it easier for us to keep you informed and for you to follow Suzie’s progress.

To register for these updates you need to visit Suzie’s website. There are two ways to accomplish this:

1. By clicking the following link

http://www.caringbridge.org/visit/nanisgreatadventure

2. By visiting CaringBridge at www.CaringBridge.org. and entering the name of our website: nanisgreatadventure

Feel free to contact CaringBridge if you have questions about using the site or if you need assistance.



We're hopeful that this process works as well for you as we envision that it will for us.



Love to all,



Mike

The more things change the more they stay the same. Suzie continues getting stronger--she's able to get around the house by holding onto walls and furniture, using the walker only on occasion. She cooked dinner this evening and has spent a lot of time the past few days working on her crafts again, always a good sign. Ironically, GVHD is coming on strong, started this afternoon, which means that doctors will, once again, increase her prednisone. Too much prednisone, in the past, has resulted in diabetic shock, weight loss, less muscle tone, loss of energy and overall weakness. Guess that beats to much GVHD, which could begin attacking vital organs. We'll keep you posted,

Mike

Suzie's IgG was still low, 240 when it should at least measure 700, so she spent yesterday receiving another infusion of gamma globulin. Still dependent on walkers and wheel chairs but she's much stronger and more alert than at any time in December. I don't know where she finds the strength but I'm glad she's doing it!

Mike

I've really been worried for the past month because Suzie's been unable to regain her strength and that alone was beginning to depress her. Had her blood drawn to test CBC and IgG levels on Thursday and learned that from a cancer perspective she is holding her own. Samples for IgG had to be sent out for analysis so, given the holidays, we've no idea where she stands here. Nonetheless, another miraculous recovery now appears to be underway. She was a little stronger yesterday and that trend continued into today. Last night, she got the first good night's sleep she's had in well over a month.

Many thanks to everyone because your prayers are helping!


Mike

We started experiencing a big turnaround this morning as Suzie started coming out of a stupor she has been in since getting home last Thursday. Long story short, the move to fight GVHD with prograf versus prednisone was the uderlying cause of her lethargyt. They started out by giving her too much prograf too soon which gave rise to many side effects, none of them good, and she exhibited most of them. Most worrisome was an increase in sugar with both the prednisone and the prograf acting as catalysts. I thought she was headed for another stay in the hospital but she's pulled out of it and will be home for Christmas. Less prograf going forward, for a while, and much hope for continued remission of the cancer.

Merry Christmas to all,

Mike

Suzie was discharged late Thursday because we can treat the GVHD at home as well as they can in the hospital. She's tired, although less so than the day she was admitted, but glad to be here where she's a bit more comfortable. Doctors are trying a new 'cocktail' to see if they can help control the GVHD using less Prednisone. They will check her blood levels on 12/21 and again on 12/23 when we visit with her oncologist.

Semper Fi,

Mike

What a week! With Suzie's blood pressure stabilized and her immune system fortified, Graft versus Host decided it was its turn to mess with her. The rash appears on her scalp, face, neck, hands, legs and feet and she is suffering lots of pain and discomfort in many of her joints. Will she never get a break?

As background to yesterday's post, Suzie's oncologist had ordered tests to determine the level of IgG antibodies in Suzie's body. FYI, we've since learned, via WebMD, that IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. In a normal person, you would expect to find 565–1765 mg per deciliter. The hospital determined that Suzie had only 41 mg per deciliter! Not good, so they decided to inject her with Gamma Globulin and give her immune system the temporary boost it needed.

Turns out that infusing Gamma Globulin can be tricky. She flushed heavily at first, so they stopped the drip for an hour, gave her an additional round of preparatory drugs, and began anew. She did not flush this time, but it appears that this round of injections, plus the high levels of prednisone she is taking, precipitated the rapid and dramatic rise in blood pressure. Not fun!

Anyway, she remains in the hospital and will probably be released on Wednesday. Her BP is still fluctuating, but has not gone above 170, and needs to be weaned from her IV medications and back onto pills.

Love to all,

Mike

An event that seemed minor at first turned a little ugly Saturday afternoon when Suzie's blood pressure began rising. Went over 200 around 5:30 and climbed as high as 217. Several attempts with different medications to bring the systolic down failed and doctors were about to move her to intensive care when, at 2:30 Sunday morning, they decided to try one more medicine. Her systolic fell to 190 by 3, to 150 by 3:30 and to 142 by 4, thus ending the crises. We thank God because the last thing she needs is to suffer a stroke!

Suzie was admitted to the hospital yesterday afternoon because she was lethargic and running a very high fever. This is not surprising given that this is flu season and that her immune system is compromised. The good news is that this is not the cancer, all of her red blood counts look good, and it is not COPD, the concentration of oxygen in her system is 98%. Doctors think we caught her in the early stages of a bacterial infection and are treating her accordingly. It does not look like she is in danger, we'll post again once she is released from the hospital.

Mike

Happy to report that we had an enjoyable Thanksgiving, especially because Suzie's still in remission, still fighting rejection and still holding her own. We are already looking forward to the end of the month so we can see everyone again and celebrate Christmas.

We're delighted to report that our meeting with Suzie's donor went well. We met him, and his parents, at a restaurant in St. Louis where Bruce and Suzie had well over an hour to both eat and learn more about each other. He's as kind as we hoped and is even willing to spend time counseling a donor brought into the fold by the drive Lisa engineered earlier this year. This is all so amazing.

Last week, we traveled to Boston to spend time with Lisa, to participate in a 'Light the Night' fund raising walk for the Leukemia and Lymphoma Society and to help raise funds for the MPD Foundation. Although back to back Northeasters forced us to cancel on the walk, Suzie and Lisa raised more than $500.00 selling hand crafted items donated for this purpose by friends and family and/or items they'd made themselves. All who participated by crafting the items sold or in the sales effort are pretty kind themselves!

Talk about courage: all this has been achieved in spite of an acute bout of graft versus host disease. Left untreated, this caused a significant rash as well as painful swelling and itching in both of Suzie's feet. Doctors were able to offset these symptoms through the aggressive use of Prednisone but these treatments led to the loss of body weight and muscle tone as well as a significant increase in her sugar levels. We're tapering off now and are prayerful that we won't have another bout with steroid induced diabetes.

We'll keep you posted!

Mike

We've enjoyed good news and good times during the last couple of weeks. News that Suzie no longer needs to be on Bi-Pap therapy and approval from Blue Cross to replace a large, heavy, noisy oxygen concentrator with a lightweight portable that makes much less noise were followed by an enjoyable visit with Diana and Jeff, Suzie's sister and brother-in-law.

But the fun does not stop there! Suzie and I leave tomorrow for St Louis where Suzie will meet, and thank, the man kind enough and generous enough to donate the bone marrow products that have kept her alive since the transplant just over two years ago. Needless to say, this is EXCITING!

Love to all,

Mike

Today we received a mixture of disappointing and good news from M D Anderson:

There is no sign of the donor's cells in Suzie's bone marrow and the number of cancer cells continues to increase. %$@&^%@.....

Revlimid is helping us manage this disease.

Signs of rejection continue and our transplant doctor is of the opinion that some of the graft is still active. He hasn't given up hope that Suzie might experience a rebound.

Suzie's alive thanks to the transplant and we've enjoyed many moments together that would have never happened were it not for the donor's act of kindness.

Just wanted everyone to know that today, August 24th, marks the second anniversary of Suzie's transplant. MD Anderson considers this her second birthday, not too sure what to make of a 66 year old co-habitating with a 2 year old, but...


:-)

Mike

Sorry it has been a while since you've heard from us but everything has been
slow moving, we don't want to raise false alarms or false hopes and it's hard to
know just when it is the right time to share. That said, here's where we stand
on both fronts:

Cancer

Twelve months after the bone marrow transplant, which took place in August 2007,
Suzie underwent routine testing to determine the success of this procedure. The
biopsy results indicated that no measurable signs of the donor’s DNA were
observed in Suzie’s bone marrow, devastating news because it meant that the
transplant was not leading to a cure of her cancer.

Suzie began taking a new medication, Revlimid, in November 2008. The role of
this drug is to manage her cancer and the results thus far are remarkable: each
of the all important red blood, hematocrit and hemoglobin counts improved
dramatically and have remained within their normal ranges for the past few
months. In addition, the persistent rash on her skin indicates that rejection
is still an issue and that the fight may not be over.

We just returned from Houston for the testing she undergoes every six months to
measure how much of the donor’s DNA is in Suzie’s bone marrow. When we asked why
there were still signs of rejection while there was no sign of the donor, we
were told that there have been instances, for other types of cancer, when the
donor ‘recovered’ and the transplant took root. Our transplant physician
reminded us that Myelofibrosis is a rare disease and that there is not a large
body of knowledge to draw on. He noted her attitude, courage and ability to
overcome the multitude of obstacles she’s encountered during the past three
years, then stated that there is a slight chance that she might experience such
a turnaround. Obviously, we are looking forward to the results of this month’s
biopsy and should have them in the next two to four weeks. We will post the
results on the blog,

http://nanisgreatadventure.blogspot.com/

as soon as we have them!

Finally, per our doctors, none of this would have been possible, were it not for
the transplant, because Suzie wouldn’t have survived this long had she done
nothing.

COPD

We discovered that Suzie suffered from this condition, attributed to smoking as
well as exposure to second hand smoke, six months after we discovered that she
had cancer. We did not focus major amounts of energy here because the fight
with cancer was all consuming. We’ve learned, the hard way, that we can not
ignore this disease: with little more than 40% lung capacity, she has a
difficult time exhaling enough carbon dioxide to keep her blood chemistry in
balance; doctors feel that she would not be able to handle the rigors of a
second transplant, and; she has no immune system and is a sitting duck for
infectious diseases, especially those impacting the respiratory system.

Overall, she’s a proven fighter that has overcome the odds four or five times
since this saga began. Your prayers and support have sustained her and we would
not be where we are without your help.




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Had a little scare Thursday when Suzie's temperature suddenly spiked to 102.4, a fact we did not discover until we were checking into the pulmonary's office. Good news is that her oxygen and carbon dioxide levels checked out OK and her blood levels, from a cancer persepective, still look good. Treated her with levaquin and increased her prednisone to guard against respiratory failure and we were able to have a great visit with Kathi and Don Massey, good friends from GA, from Thursday PM until Saturday AM.

Mike

Our reunion last week was physically demanding but I'm delighted to report that everything went well and Susie is not suffering any ill effects. In fact, she has moved on and is now busy creating a quilt for a younger friend pregnant with her first child. There are times that I wish I had her energy!

Well, Suzie's been home for almost a month and her recovery is well underway. She now walks without the use of a walker and her energy level is high. She's managed to sew a pair of curtains for Lisa, continues working on her quilting projects and has been quite busy preparing for a visit from our son, daughter and grandchildren as well as all 16 members of her sister Diana's family. She's amazing!

Will post again after the 'reunion' and let you know how she held up.

God Bless,

Mike

Today, Lisa, her good friends and The United Church of Christ in Ridgefield, CT sponsored/hosted an event to raise awareness of the need for more people to volunteer to donate blood products needed for transplant purposes. The good news: this event, which was held in Suzie's honor, resulted in 20 new volunteers!

You too can help by logging on to 'Be the Match™' and giving an amazing gift. Go to:

www.bethematch.org

Click on “join the registry”, then on “join now”!
To avoid the standard $52 fee you MUST use Suzie’s promo code: CM579