So, although I was 3,000 miles away from my brother, my boyfried Orv and I hosted a small Thanksgiving of our own. We had Orv's cousin, Devin, our close friend and one of Orv's business partners, Bill, and Orv's Aunt Sharon over. His aunt, coincidentally enough, brought these little stuffed animals which, well, weren't animals at all. In fact, they are actually microbes. (Visit their website at www.giantmicrobes.com.) Orv's been fighting a nasty MRSA ("multiple resistant Staphylococcus aureus", aka "Superbug") and has been on all sorts of antibiotics (I say it's sympathy illness for Sean). Anyway, Sharon brought over a Superbug for Orv, as well as some of its friends. Here's MRSA hanging out with his good pal, White Blood Cell.



And here's Superbug having a cold one:

And here's Mr. Healthy White Blood Cell coming to Sean's rescue!

 

Hope everyone had a good Thanksgiving!

Here's an update from Isolde but in Sean's own words:

"Yesterday was terrible. I have not been that tired in a long time. I told Mel that I felt I had been up for several days but hadn't. Every Thursday we meet with the doctor so they can evaluate treatment and he said that it's normal but may get worse. WORSE???? I better go buy one of these:



http://gizmodo.com/gadgets/gadgets/selkbag-sleeping-bag-153211.php

So that way if I go down in the mall, or in Costco, I will at least be comfortable through my nap!!!! Can you imagine looking into a passing cart and thinking "Oh look, a sleepy baby" and then see my ugly mug snoring back at you? I guess it wouldn't be that bad until the diaper change!" (Eww, thanks for the visual, Sean!)
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I think I'm somehow suffering the chemo and radiation effects by proxy because after yesterday's red-eye flight, I feel ruined! I can't even begin to empathize with what Sean's going through! :(

Sean's little cousin, Ally, made a very special delivery to Sean on her recent visit. Ally's entire class made Sean "get well" cards, which he opened and read one by one. This was really touching, and Sean wants to thank each and every one of you very, very much for thinking of him.

Ally presents Sean with an envelope containing the cards made by Mrs. Wilson's class, while her cousin, Jordyn, looks on.


Sean opening and reading all the cards.


Sean really enjoyed reading the cards, and appreciated how much time and effort went into making them!


Here's Sean and Ally once all the cards were opened. That's a LOT of cards! He loved every one of them.


Here's Ally with her cousins, Savannah and Jordyn, with Sean and all the cards made for him by Mrs. Wilson's class.

Update from Mike:

The early doctor’s appointments do allow for us to get a lot done. We met with the oncology pharmacist who gave Sean and Mel their instructions and literature on not only the Temador but also on the anti-nausea medications as well. She explained the possible side effects, loss of hair, fatigue, nausea, etc., and what to do should these things occur.

He will be taking 160mg of Temodar and this is determined by his height and weight etc. If he should experience a loss of weight, then this dosage may be adjusted. He will have a couple of different anti-nausea medications. He then went and had his blood drawn for the additional testing that Dr. Coty ordered.

Our next stop was the radiation oncology office where Sean was measured and fitted for his radiation headgear that he will wear during treatment. This mask is a plastic material that was heated in warm water, then placed over Sean and formed to his head and face. This is what is marked for the radiation locations etc and is affixed to the table when he goes into the machine for the treatment. It also keeps his head from moving during treatment. 

  

The entire treatment after his first one will only take about 10 minutes. As of right now, Sean is scheduled to begin his first treatment on Monday 11/10/08 at around 2pm. This means that he will also start his chemo on the same day. It looks like, barring any unforeseen delays, we will finally get going on Monday!

Here's an update from Mike of what transpired yesterday:

Dr. Baker covered Sean’s history, did a very thorough neuro-exam, checked his scar healing, a vision check, checked his arms and legs for reflexes, and looked deep into the corneas at the vessels, and said that everything looked really good.  

He said that he had seen a lot on his 24 years as a radiology-oncologist, and specifically in the neurology field.  He has treated GBM’s many times and  is very familiar with them.  He wants to start off by warning Sean that he has a very aggressive attitude with radiation therapy.  He plans to start radiation with an external beam radiation also called IMRT for 6 weeks at a strength of 60 grey.  He will radiate 1-2 cm around the surgical site, except where sensitive structures are that they would have to avoid, like the optic nerve, the pituitary gland and the brain stem. (This is consistent with the neuro oncology dr.’s that we have been consulting with.) This will coincide with the Temodar which has been ordered by Dr. Coty.  (Chemo training 11/5 @ 930am)  If there is any enhancement following the 1^st course of treatment (6 weeks) after the first scans, they will follow up with radial-surgery such as Stereotactic radial surgery or gamma knife.

He warned of side effects: inevitably there will be hair loss, which is likely to grow back, and some rare side effects like abscesses, additional vision problems, and pituitary gland damage which can affect his hormone levels.  (Sean asked if he would grow “man boobs”, which he thought was pretty funny!)

Dr. Baker said that he would investigate mainland clinical trials for Sean and could possibly administer med’s here in Maui .  He is connected with CRCH who has lists of trials which he offered to investigate for Sean.   He would be willing to work with Kaiser Doctors in coordinating his meds and care with them. 

Dr. Baker said if he had a brain tumor, he would consult with Dr. Lynn Ashby from Phoenix at BNI, Barrows Neurological Institute.   She is a close colleague of his and is connected closely with Hawaii and almost started a practice here.  He considers her the best in the Neuro oncology field.  He said he would be willing to consult with her in Sean’s case. 

We set an appointment for tomorrow 11/5 at 11am to measure for a mask of Sean’s face to make a metal helmet for protection during radiation.  They will also layer MRI scans on top of CT scans to make a topography map of Sean’s brain, mapping the resection site and make a plan for his radiation therapy.  Sean is all ready for his Iron Man Mask!  The doctor said it would take a couple days to develop the plan and get  a start date.

In the meantime the doctor will investigate trials, that Sean qualifies for, which we could do here on Maui , involving some drugs or vaccines that show promise.  The doctor just got back from a conference with thousands of neuro oncologists that were sharing all their knowledge in the newest and greatest methods and drugs in their field.  He prides himself on staying abreast of all matters of the brain and considers it his forte. He reassured us that if there was something new that was having great and wonderful results, the other neuro oncologists would be jumping all over them.  

Immediately following the appointment, he called back after consulting with Dr. Ashby, in Arizona , and she recommended Chemo/radiation as recommended and NOT using drugs such as Avastin until after a reoccurrence due to the risk of further damaging the body.

Sean was quite impressed with the doctor and his knowledge and expertise.  He is equally impressed with his commitment and follow through.  He is pleased that we have a doctor that understands our struggles with finding cutting edge cancer treatment on a rock in the middle of the ocean, and is willing to do everything within his power to help us find it.  He has seen first hand how hard it is for patients to travel and live out of their suitcases, sleeping in hotels and how taxing it is on the body to travel outside of Hawaii .  He knows the pressure Sean is under to get quality cancer care.  Sean’s impression was that the doctor was confident, yet not arrogant and stressed the importance of risk/benefit analysis, which Sean considers very important.

At about 6pm, Dr. Coty called the house and said that he was looking at the blood test results that he had ordered last week.  He said that the check for Hepatitis C’ was negative but that he got low levels of positive for Hepatitis B.  He said that it was at a level that would be consistent with possibly a vaccine.  Sean told him that he had the battery of shots for Hepatitis when working with the Sheriff’s Dept., on the dive team as well as after a fight that he was involved in where he got an open wound from an individual that was positive for various things.

The doctor said that overall, the liver function tests were improved over the last tests but said that he wanted Sean to come in tomorrow for another series of blood tests.  He anticipates that the tests will show more improvement, however if the test results are worse, then he may do a liver biopsy in two weeks.  If the tests show improvement, then he will proceed with treatment as scheduled.  The rash diminishing and no fever etc., are what makes him feel that the tests will be in Sean’s favor.

Dr. Coty said that he reviewed the ultrasound of Sean’s right arm where he felt the lump and was experiencing the pain when touched, and that he feels it is a superficial blood clot.  He said that they will monitor it, but that he doesn’t recommend any anti-coagulants at this time.

Sean is still scheduled for Chemo/Anti-Nausea medication training in the morning, so he will go in a little early for the blood draw.  He will then go to be measured for the radiation head gear that is necessary for undergoing the treatment.   

With an article on Sean going to press today in the local Maui News, the website's been experiencing so much traffic that I haven't been able to even post the link! But low and behold, here it is: http://mauinews.com/page/content.detail/id/510529.html?nav=12. Many thanks for the fabulous article written by Sky Barnhart, whose other work can be found at www.skywritemaui.com.

Below are photos that ran in the article and are reused here courtesy of The Maui News:
  

And here are some pics from Maui Ocean Center's underwater pumpkin carving that Papa Mike took Jordy to. As if it weren't challenging enough already, the carver-divers were kept constant company with sharks!

Chumming the water with...pumpkin??

Jordy and her Papa at Maui Ocean Center.


And then there was Sean's clever Halloween masterpiece:
I wonder where he drew his inspiration from? (Hint: that's a pretty darn good resection!)

Hmm...am I seeing double, or is that the official "Stody" stance?


In other news, Sean returns to Oahu tomorrow for his recheck with neurosurgeon, Dr. Donovan. We are all very anxious to see what the doctor has to say. Meanwhile, I will be en route to Maui, arriving at 1:30pm. Will update on his progress as soon as those details become available.

Reminder:
Exactly one week from today is the Roi Round-up: An Invasive Species Dive Tournament in support of Stody and family. See "Roi Round-up" page for more info, and stay posted for new updates over the next week!