This week, daughters, Jocelin and Crescent were here for Bill's birthday-eve celebrations along with his brother Jay. Heather has been supporting us from day one and was here for the celebration as well.
Friday, July 30, 2010
Thursday, July 29, 2010
Treatment Continues
Bill has completed his first week of chemo and radiation. He takes the chemo drugs 7 days a week and receives radiation treatments Monday through Friday. He'll be doing this until the end of August at which time they will reevaluate the tumor and decide what, if anything, to do next. We've decided that once this treatment is done, we'll probably talk to the folks at Duke who are on the leading edge of treatment for this type of tumor. For anyone who wants to google what we've got, the recommended site is http://www.abta.com/. The link is also in the side bar here. Bill's diagnosis is Stage 4 glioblastoma multiforme. As with anything on the internet, there's good info and bad info, but the American Brain Tumor Association is a highly respected site.
Week 2 promises to be challenging as Bill's brain is likely to swell from the ratiation and the tumor has not really had the opportunity to start shrinking. Most of his symptoms had significantly improved due to the steroids (he likes to show off his muscles :)), but now some of the initial symtoms have returned. The most frustrating is when he can't find the right word or becomes confused. He is also extremely fatigued. On the bright side, he still has his hair and his sense of humor.
We really appreciate all the notes, jokes, calls, cards, and text messages. Bill would like to respond to each of you personally, but just doesn't have the energy right now. We're hoping next week will be better. The doctors have cleared him for body surfing as soon as he feels up to it.
You can catch us at the beach.
Love hugs and kisses,
Darlene and Bill
P.S. Please pass this on to anyone who might be interested. Please also forward to me anyone's email who would like to be on the list.
Week 2 promises to be challenging as Bill's brain is likely to swell from the ratiation and the tumor has not really had the opportunity to start shrinking. Most of his symptoms had significantly improved due to the steroids (he likes to show off his muscles :)), but now some of the initial symtoms have returned. The most frustrating is when he can't find the right word or becomes confused. He is also extremely fatigued. On the bright side, he still has his hair and his sense of humor.
We really appreciate all the notes, jokes, calls, cards, and text messages. Bill would like to respond to each of you personally, but just doesn't have the energy right now. We're hoping next week will be better. The doctors have cleared him for body surfing as soon as he feels up to it.
You can catch us at the beach.
Love hugs and kisses,
Darlene and Bill
P.S. Please pass this on to anyone who might be interested. Please also forward to me anyone's email who would like to be on the list.
Sunday, July 25, 2010
The Dude Travels to Virginia
We made a quick trip to Virginia for Cassidy's baptism last weekend. It was a trying trip for Bill, but we are really glad we went. Spencer, Nicole, and Cassidy are moving to Portland, Oregon the beginning of September, so we feel very lucky to have had the opportunity to visit with them before they leave.
For the record, Cassidy was the "best" baby at the service.
Sunday, July 18, 2010
Nice Surprise
Brianna and her family came for a surprise visit. The kids enjoyed feeding the turtles with the Turtle Whisperer.
Sunday, July 11, 2010
The Journey Begins Here
Bill has been diagnosed with a glioblastoma -- a rapid growth inoperable brain tumor that is presently taking up most of the left side of his head. It is putting pressure on his speech center so his speech is slurred and he sometimes has trouble finding the right words. He is also prone to weakness on his right, dizziness and balance issues. He is at risk of seizures. However, his sense of humor is intact.
We have decided to go forward with treatment here in Jacksonville and have great confidence in his team of physicians. Justin was able (through a friend) to get us in touch with Ted Kennedy's doctor at the Dana Farber Institute in Boston. (Bill has the same type of tumor as Kennedy), but due to the urgency of getting started on radiation and chemotherapy as soon as possible, we'll be holding on to that option for some time in the future.
We will know much more in the next few weeks. Today Bill was fitted with a plastic mask which is used to hold his head in place and "build" a model of his brain and tumor for computer directed radiation treatments. We expect to start with radiation and chemotherapy on Monday or Tuesday next week. The treatments run for 5 days a week for 5-6 weeks and then a month off. The treatments can cause swelling and actually make his symptoms worse in the initial few weeks but should then significantly reduce the size of the tumor and improve his quality of life. The tumor cannot be cured so we are looking at getting the best out of the time we have. (Average 1 1/2 years...but we're looking for 7).
We apologize for not calling you individually. There is a lot going on and we don't have the wherewithal right now. We are keeping an optimistic outlook and are touched by your outpouring of love and positive energy. (keep it coming).
We love you all and our doors are always open. We expect to be spending a lot of time at the beach.
Bill and Darlene
We have decided to go forward with treatment here in Jacksonville and have great confidence in his team of physicians. Justin was able (through a friend) to get us in touch with Ted Kennedy's doctor at the Dana Farber Institute in Boston. (Bill has the same type of tumor as Kennedy), but due to the urgency of getting started on radiation and chemotherapy as soon as possible, we'll be holding on to that option for some time in the future.
We will know much more in the next few weeks. Today Bill was fitted with a plastic mask which is used to hold his head in place and "build" a model of his brain and tumor for computer directed radiation treatments. We expect to start with radiation and chemotherapy on Monday or Tuesday next week. The treatments run for 5 days a week for 5-6 weeks and then a month off. The treatments can cause swelling and actually make his symptoms worse in the initial few weeks but should then significantly reduce the size of the tumor and improve his quality of life. The tumor cannot be cured so we are looking at getting the best out of the time we have. (Average 1 1/2 years...but we're looking for 7).
We apologize for not calling you individually. There is a lot going on and we don't have the wherewithal right now. We are keeping an optimistic outlook and are touched by your outpouring of love and positive energy. (keep it coming).
We love you all and our doors are always open. We expect to be spending a lot of time at the beach.
Bill and Darlene
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