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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