Horrible, horrible news today. Graham won't be able to have the bone marrow transplant as planned, because test results from yesterday's PET scan show that the cancer has spread all over. It's in his skull, neck, chest, lungs, belly, spleen, under arms, thigh...
The doctors want to see if chemo will beat it back down again well enough for him to be able to get a transplant. But he's already been treated with the most powerful chemo combos without success, so the odds aren't good. The doctor told Graham to put his affairs in order because if the chemo doesn't work, he will likely have less than two months to live.
It's so unfair. Graham is such an incredibly good person, an absolute mensch, and way too young.
It's still possible that things will work out. We'll continue to hope for a good outcome, but will plan for all possibilities.
We're looking forward to having our East Coast relatives visit.
Hugs to everyone.
Wednesday, August 27, 2008
Tuesday, August 26, 2008
Visit from a friend gets Graham out of a funk
Graham, Gary and Lynn
Our friend and neighbor from Chesterfield, Lynn, came to visit Graham for several days, and it really lifted Graham's spirits. Graham has had very little energy since he started radiation, and his throat has been inflamed and so sore that it's been hard for him to swallow or eat. He's mostly surviving on Ensure drinks, pudding and ice cream. He's lost about 10 pounds, and has been feeling pretty grumpy and blue.
Lynn is a wonderful storyteller. So he regaled Graham with all kinds of interesting stories, distracting Graham from his painful throat, and motivating him to get out of the house for short jaunts.
We went to Half Moon Bay, and in our quest to find food that would be slippery (for Graham's sore throat), we ended up discovering THE BEST sushi place, called Sushi Main Street. Our area, despite a large Asian population, has shockingly bad sushi, so this was a real find. Graham was able to enjoy Noodle soup and some ice cream.
Another night we had a Slippery Feast, tasting all kinds of slippery treats from Whole Foods (aka Whole Paycheck): sesame noodles, beet salad, peas, sweet potatoes, chocolate pudding, rice pudding, curry chicken salad, split pea soup, jello, ice cream...
Graham's mood has definitely improved since Lynn's arrival. Hopefully his good spirits will continue even once Lynn has gone back home.
Bone Marrow Transplant Preparation
We met with Dr. Advani and Dr. Hancock yesterday, and they agree that Graham would benefit from a bone marrow transplant (BMT). Dr. Laporte, the transplant doctor, had been hoping to do a double transplant, but an auto transplant can't be done when the cancer is so active, so they will just do what's called an ablative allogeneic BMT. They'll give Graham high-dose chemo to blast the rest of the cancer, and then replace his destroyed stem cells with a donor's. He'll be in the hospital for about a month.
There's a decent chance that this treatment will actually cure Graham. Unfortunately, though, about a third of BMT patients don't live past a year. Each stage is fraught with various dangers.
Apparently there's a short window of time for Graham to get a transplant because his cancer is so aggressive, so thankfully his brother Gary is a match, and the transplant can take place as soon as September 11th. Gary will truly be a life-saver, because it usually takes 3-4 months to find an unrelated donor, and Graham's "window" would be closed by then.
Gary is very excited about being able to help his brother, and we are so grateful for his generosity. Gary will need to get several neupogen shots to rev up his stem cell production, and this will give him some bone pain for about a week. The actual extraction of the stem cells is painless. It's very similar to giving blood.
Prior to September 11th, Graham has all kinds of tests to get through: a PET scan, bone marrow biopsy, echo cardiogram, pulmonary something or other...the list is endless. Thank goodness Stanford is only 10 minutes away!
There's a decent chance that this treatment will actually cure Graham. Unfortunately, though, about a third of BMT patients don't live past a year. Each stage is fraught with various dangers.
Apparently there's a short window of time for Graham to get a transplant because his cancer is so aggressive, so thankfully his brother Gary is a match, and the transplant can take place as soon as September 11th. Gary will truly be a life-saver, because it usually takes 3-4 months to find an unrelated donor, and Graham's "window" would be closed by then.
Gary is very excited about being able to help his brother, and we are so grateful for his generosity. Gary will need to get several neupogen shots to rev up his stem cell production, and this will give him some bone pain for about a week. The actual extraction of the stem cells is painless. It's very similar to giving blood.
Prior to September 11th, Graham has all kinds of tests to get through: a PET scan, bone marrow biopsy, echo cardiogram, pulmonary something or other...the list is endless. Thank goodness Stanford is only 10 minutes away!
GarySunday, August 17, 2008
Radiation Rocks!
Mesh mask holds Graham's face down, to keep him from moving during radiation:
After a rocky start, the radiation therapy finally seems to be working. Graham's neck tumors are getting smaller. Phew!
Dr. Hancock amazingly got Graham started on a twice a day radiation schedule the very next day after Graham first met with him. Since Stanford is such a popular cancer center, all the machines tend to be booked, but somehow, Dr. Hancock managed to get Graham in.
After the first two treatments, Graham started to feel very bad. By Saturday night, he was running a fever, had no appetite, and no energy. We went to the Emergency Room because we thought he had an infection. They were very nice, ran lots of tests, but said there was no infection, he was fine, that the fever was likely just a result of the radiation doing its job. So we went home. But he continued to feel BAD.
On Monday, as soon as Dr. Hancock laid eyes on Graham's neck, which was very red and a little bubbly, he ordered Graham to get admitted into the hospital for IV antibiotics because he felt he had an infection either in his neck or on the skin of the neck. So apparently the ER doctors don't know squat about lymphoma or radiation.
Anyhow, after 24 hours of IV antibiotics, Graham was feeling better, though not great, and was allowed to go home with a bottle of oral antibiotics.
The next day, Dr. Hancock told Graham that he was worried because his tumors were not responding well enough to the radiation. Usually they "melt away" and Graham's were only very slightly getting smaller. So he upped the radiation doses and also arranged for Graham to get zapped over the weekend.
The good news is that we can now see a noticeable change in the tumors and Dr. Eastham (Hancock's Fellow, a new doctor) says that Graham has "turned a corner." Let's hope Dr. Hancock agrees when he sees him next!
Before radiation:
Graham's neck is really huge on both sides,
and the tumors have also puffed out his cheeks and under his chin.
After a rocky start, the radiation therapy finally seems to be working. Graham's neck tumors are getting smaller. Phew!
Dr. Hancock amazingly got Graham started on a twice a day radiation schedule the very next day after Graham first met with him. Since Stanford is such a popular cancer center, all the machines tend to be booked, but somehow, Dr. Hancock managed to get Graham in.
After the first two treatments, Graham started to feel very bad. By Saturday night, he was running a fever, had no appetite, and no energy. We went to the Emergency Room because we thought he had an infection. They were very nice, ran lots of tests, but said there was no infection, he was fine, that the fever was likely just a result of the radiation doing its job. So we went home. But he continued to feel BAD.
On Monday, as soon as Dr. Hancock laid eyes on Graham's neck, which was very red and a little bubbly, he ordered Graham to get admitted into the hospital for IV antibiotics because he felt he had an infection either in his neck or on the skin of the neck. So apparently the ER doctors don't know squat about lymphoma or radiation.
Anyhow, after 24 hours of IV antibiotics, Graham was feeling better, though not great, and was allowed to go home with a bottle of oral antibiotics.
The next day, Dr. Hancock told Graham that he was worried because his tumors were not responding well enough to the radiation. Usually they "melt away" and Graham's were only very slightly getting smaller. So he upped the radiation doses and also arranged for Graham to get zapped over the weekend.
The good news is that we can now see a noticeable change in the tumors and Dr. Eastham (Hancock's Fellow, a new doctor) says that Graham has "turned a corner." Let's hope Dr. Hancock agrees when he sees him next!
Before radiation:
Graham's neck is really huge on both sides,
and the tumors have also puffed out his cheeks and under his chin.
The tumors on his right side are almost all the way down and the tumors on his left side are greatly reduced.
Wednesday, August 6, 2008
Cards are like Hugs
Thanks for all the wonderful cards! People are thoughtfully spreading the word, and Graham is getting calls and cards from friends and work associates from all the various places we've lived and worked. Graham is enjoying catching up with everyone.
Every day in the mail we get several cheerful get well cards and it's like getting a big hug.
Tuesday, August 5, 2008
Cousin Paul Visits; Graham and His Projects
Graham loves to do home repair projects. As soon as he has a speck of energy, he finds something that needs fixing. It makes him happy to be productive.
His latest project is fixing dozens of broken pickets in the fence around the front garden. They are custom pickets, so Graham had to make them himself. For each one, he took a pole, used power tools to cut it lengthwise, and then to cut it in half. Then he used yet another fun tool to make each picket pointy.
Cousin Paul from Boston visited at the end of the project and got to help Graham install them with an air nailer.
Paul is a great cook and made Graham an awesome dinner.
Gary got creative with the fruit.
Graham was feeling pretty sleepy, but when it was his turn at Scrabble, he would still manage to come up with mega-point words.
His latest project is fixing dozens of broken pickets in the fence around the front garden. They are custom pickets, so Graham had to make them himself. For each one, he took a pole, used power tools to cut it lengthwise, and then to cut it in half. Then he used yet another fun tool to make each picket pointy.
Cousin Paul from Boston visited at the end of the project and got to help Graham install them with an air nailer.
Paul is a great cook and made Graham an awesome dinner.
Gary got creative with the fruit.
Graham was feeling pretty sleepy, but when it was his turn at Scrabble, he would still manage to come up with mega-point words.
Monday, August 4, 2008
Three Strikes, But Not Out Yet!
R-CHOP didn't work completely. R-ESHAP didn't work. And now R-ICE doesn't appear to be working either. The tumor in his neck is very aggressive and stubborn.
Although the cancer in the rest of his body seemed to respond well to the chemo, the neck remains a problematic area. We'll be meeting with a radiation specialist soon to target the neck. Hopefully we can get an emergency appointment with Dr. Hancock in the next few days.
Although the cancer in the rest of his body seemed to respond well to the chemo, the neck remains a problematic area. We'll be meeting with a radiation specialist soon to target the neck. Hopefully we can get an emergency appointment with Dr. Hancock in the next few days.
Subscribe to:
Posts (Atom)
