Greetings everyone,

It's been a long time since I've updated everyone on Hugh's status fighting the desmoid tumors. After about 18 months of very minor growth, and remaining on the oral medication regimen, we were granted a reprieve from quarterly CT scans to 6-month increments. Hugh had his scans last week at the 6 month mark.

I wish I could say that the outcome was the same - no growth, but unfortunately that wasn't the case this time. Three of the five tumors have become "more pronounced" in the words of our oncologist. Yes, this does mean there is some new growth. Two of the three are located where a surgeon could easily remove them, but one is located near the site of the original tumor and that makes removing it surgically a difficult process. And as you may recall, surgery certainly does not guarantee the tumors won't re-grow, and possibly in multiples.

So while we have not yet made a decision as to the next course of action, there are really only four possible options right now: (1) do nothing, (2) continue on the same medication that obviously isn't working, (3) begin weekly chemo infusions with low-dose Methotrexate and Vinblastine (or something like it), or (4) surgery. Our oncologist is talking with a surgeon with the skill and expertise to handle this kind of surgery (it won't be done locally), to determine if it's truly an option. We hope to receive that opinion this week. In any event, we are definitely moving on to the next phase of treatment.

In our corner remains the Desmoid Tumor Research Foundation, [link], which has already provided three grants last year and four grants this year for research to treat and perhaps prevent these tumors. And progress is being made! In fact, we encourage you all to visit the website and see what progress has been made and if you are able, donate to the foundation. During the month of May, a matching grant of up to $50,000 has been offered, effectively doubling all donations. Remember that this research, in addition to helping treat desmoid tumors which are rare, also shows promise for treatment of ALL soft tissue sarcomas. The DTRF is holding its annual fundraising event and patient symposium at the end of May. Hugh and I will be attending in Newark, NJ. In fact, we have donated four of Hugh's 16x20 fine art photographs to the silent auction. If any of you are in the area or would like to be there with us, please RSVP at the website.

We remain positive and optimistic. Our grandboys have just celebrated their 3rd and 6th birthdays and we look forward to spending many, many more with them!

As always, we appreciate all of you, your prayers, good wishes and healing energy.


Audrey