Yesterday was Jason’s fifth and last radiation treatment. It was a success in that it did gradually reduce the pain in his eye each day and for the first time yesterday, he had no pain (just still uncomfortable)! The Radiation Clinic now has a tradition that when radiation treatment is complete, the patient gets to ring a ship’s bell to announce he’s finished. So Jason got to ring the bell and everyone in the waiting room applauded as we left, and wished him well. A Navy captain had gotten treatment there for 2 months every day and felt like it was his second home. When he left, he wanted to give them something. He said whenever he left the ship, they would ring a bell announcing his departure. So he gave them a ship’s bell and now all patients get to ring it when they’re finished. And he took his mask home with him. I’m sure he’ll figure out something to do with it!
In the last 24 hours we have seen the swelling in his eye decrease dramatically and the color looking so much better. He’ll follow up with the eye clinic on Friday.
On Monday when we saw Dr. Kim, he told us they couldn’t get Jason in for TIL study treatment until February because they were so booked up. Dr. Kim wants to give Jason another type of chemo until he can get him in, but Jason needs to get his strength back before they can do it. The radiation left him very weak and tired. It takes about 2 weeks for the side effects of the radiation to subside, so he’ll check him in another couple weeks.
Terry left on Monday and Joe came back Monday night. With Debby being sick and Jason so weak, we needed help and he graciously said he would come back and help us out as long as we needed him. We are so thankful!
Debby’s feeling a little better today, so hopefully she’s on the mend.
And we got our baby swiss cheese from Ohio! Joe’s munching on a cheese sandwich and loving it. Thanks a lot, Carol!
Marjorie
Wednesday, December 31, 2008
Sunday, December 28, 2008
One Less Nurse Jensen
Jason’s estimated 20 minute follow-up appointment with the ophthalmologist the day after Christmas turned out to be 4-1/2 hours. But what they were able to accomplish in that time was amazing, because all of the clinics were really still closed for the holiday. He did an ultrasound of Jason’s eye which showed that the tumor had grown since October. He brought in a senior ophthalmologist for consultation and they decided that radiation was the next step to hopefully shrink the tumor and stop the pain.
We called Debby and let her know what was happening and the entire family came in and shared the rest of the day with us. This gave Jason and Debby much needed support during this trying decision making. We even had a little time between mask making and first treatment to sample “CafĂ© Anderson” with the few that had not yet eaten there.
It took the senior ophthalmologist almost an hour and many many phone calls before she was able to reach the right on-call emergency radiologist to get treatment started immediately. She was very frustrated and embarrassed that it took so long and was very close to calling the hospital administrator to complain about the service. This threat resulted with the heard of nuclear medicine coming in to see Jason and get his treatment started. This is just one more example that shows the dedication of the hospital staff, both of the ophthalmologists were supposed to be off earlier to start their own holidays but stuck around to insure Jason got the treatment he needed.
They first made the mask used to position his head for the very exacting radiation treatment. It looks like a white mesh grid in the shape of his head. They then did a CT scan with the mask still on him to determine exactly where they were going to aim the radiation. As Debby said, the actual treatments take about 15-20 minutes. To start with, he’ll get radiation treatment every day for 5 days. During the first 2 treatments he fell asleep – could be all the pain medication had something to do with that. Terry and I took Jason to his third treatment this morning. Jason’s treatment today went smooth and quick. He said each day his eye is feeling a little better, with what he classed as 8 out of 10 on Christmas Day he now says is about a 2, so that’s very encouraging. Tomorrow will be a very busy day with blood tests, an appointment his oncologist Dr. Kim, an appointment with the ophthalmologist, and radiation treatment. Somewhere in there we have to get Terry to the airport.
Debby’s out of commission today – she’s really tired with a painful cough and feeling like there is fluid in her lungs. She slept most of the day. She woke up as Jason began a nap and we watched “Momma Mia”, not a Jason type of film. Later she told us she was feeling very ill. She has all the symptoms of a bad case of the flu. We are now giving her Emergen-C and Airbourne as advised by a pharmacist. She is staying away from Jason and wearing a mask to help keep him well.
Tonight we attempted to duplicate Lorren’s corn-potato soup, it turned out to be very good!
Mom and Dad
We called Debby and let her know what was happening and the entire family came in and shared the rest of the day with us. This gave Jason and Debby much needed support during this trying decision making. We even had a little time between mask making and first treatment to sample “CafĂ© Anderson” with the few that had not yet eaten there.
It took the senior ophthalmologist almost an hour and many many phone calls before she was able to reach the right on-call emergency radiologist to get treatment started immediately. She was very frustrated and embarrassed that it took so long and was very close to calling the hospital administrator to complain about the service. This threat resulted with the heard of nuclear medicine coming in to see Jason and get his treatment started. This is just one more example that shows the dedication of the hospital staff, both of the ophthalmologists were supposed to be off earlier to start their own holidays but stuck around to insure Jason got the treatment he needed.
They first made the mask used to position his head for the very exacting radiation treatment. It looks like a white mesh grid in the shape of his head. They then did a CT scan with the mask still on him to determine exactly where they were going to aim the radiation. As Debby said, the actual treatments take about 15-20 minutes. To start with, he’ll get radiation treatment every day for 5 days. During the first 2 treatments he fell asleep – could be all the pain medication had something to do with that. Terry and I took Jason to his third treatment this morning. Jason’s treatment today went smooth and quick. He said each day his eye is feeling a little better, with what he classed as 8 out of 10 on Christmas Day he now says is about a 2, so that’s very encouraging. Tomorrow will be a very busy day with blood tests, an appointment his oncologist Dr. Kim, an appointment with the ophthalmologist, and radiation treatment. Somewhere in there we have to get Terry to the airport.
Debby’s out of commission today – she’s really tired with a painful cough and feeling like there is fluid in her lungs. She slept most of the day. She woke up as Jason began a nap and we watched “Momma Mia”, not a Jason type of film. Later she told us she was feeling very ill. She has all the symptoms of a bad case of the flu. We are now giving her Emergen-C and Airbourne as advised by a pharmacist. She is staying away from Jason and wearing a mask to help keep him well.
Tonight we attempted to duplicate Lorren’s corn-potato soup, it turned out to be very good!
Mom and Dad
Saturday, December 27, 2008
Christmas at the ER





Merry Christmas Everyone!These are pictures from Christmas Eve since we spent the majority of Christmas at the ER. We had a great Christmas Eve. We woke up to hot cranberry-orange muffins that Marjorie had baked. We went to church, watched 2 movies, one about the Star of Bethlehem and the other was the funny classic A Christmas Story. We continued to make ornaments using paint, pens and glitter glue. We even made a few shrinky dink ornaments. Then we followed the Stradley Christmas Eve cheating rule and we all got to open one present each. Marjorie had crocheted really cute beanie hats for everyone, so we opened those. Since Jason and I already had our beanies we opened other gifts. I opened a beautiful pair of earrings that my mom got from "A Greater Gift." This company helps fight poverty by allowing people from around the world to sell their crafts through fair trade. Here is the website if anyone is interested.
www.agreatergift.org
They have some wonderful gifts and its for a good cause! Jason opened Lance Armstrong's "It's Not About the Bike" in audio. Since he is having trouble with his eyesight, I thought the book on CDs was a good idea for him. Marjorie and I both read the book and really liked it so hopefully Jason will like it too.
On Christmas morning, Marjorie, Terry, Becky and I made two different quiches. One vegetarian and one for the meat eaters that even had apple in it. They tasted great. We also had a cocktail made up of champagne, orange juice and grenadine, and sliced oranges with cinnamon. We had just started our first round of present opening which included Jason and I passing out the flying monkeys that Kristy sent us. Flying monkeys were going everywhere...it was a blast. Unfortunately Jason made a sudden ducking movement to avoid an out of control flying monkey and all of a sudden everything went black in his left eye (the one with the tumor). Then he started to get such an intense pain...so bad that is caused a severe headache and continuous vomiting. All 8 of us rushed him to the ER. We suspected that his retina had detached.
We got to the ER and it was pretty empty so they took us right back. Its funny how no one has emergencies on Christmas. You know that the people who were there really needed to be there. We saw the ER doctor and he was honest with us and told us he didn't know much about examining the eye. He could see Jason's tumor and that's about it. He was kind enough to put Jason on IV fluids, pain, and nausea medication. But the pain was so bad, the pain medicine didn't even make a dent. Jason's face was drenched in sweat as well, either from the morphine or the pain, I'm not sure which. They called up the on-call Opthamologist and on-call Melanoma Medical Oncologist. Both showed up about 2 hours later...an excruciating 2 hour wait for poor Jason.
Both doctors were great. The Opthamologist checked Jason's eye and said it looked like the retina had detached. He said that while the tumor was growing, it was getting slowly detached and it had probably more completely detached and that was why Jason could no longer see any light in that eye. He said that a detached retina is not painful so he checked the interocular pressure (IOP) in both of Jason's eyes. Jason's right eye was 11, his left eye was 54. Normal is from 8 to 20. The Opthamologist said that Jason's tumor was causing glaucoma which was causing the intense pain. He thought the IOP could be easily brought down through medication and eye drops. He was wrong...
We started with 2 kinds of eye drops, put in Jason's eye every 5 minutes for 30 minutes. Then he checked the pressure and it had dropped down to 47. This was a promising start, so he added another 2 types of drops and continued to put 4 drops into Jason's eyes every 5 minutes for another 30 minutes. When he checked the IOP again, it was still at 47...not good. So then he gave Jason an IV diuretic. It had to be ordered from the central pharmacy and took 45 minutes to get to the ER. The Opthamologist waited for 45 minutes after the diuretic had been given, then checked Jason's IOP again, no change. So he then discussed with all the other doctors if a really really strong diuretic should be used. The risk was his blood pressure could drop significantly and his IOP in the other eye could drop too low and cause problems. Jason was is so much pain, we just said hurry up, we'll try anything. So we had to wait another 45 minutes for the medication to show up from the central pharmacy. This diuretic had to be infused for 1 and a half hours. Then the Opthamologist had to wait an additional half hour before he measured the IOP again. After all this, NO CHANGE. The Opthamologist told us he had never seen a patient not respond to this medication.
Meanwhile, the whole entire family is waiting in the ER waiting rooms. Only one person was allowed back with Jason. So I continuously ran out to give them updates. Finally, at 11 pm Christmas night, the Opthamologist said he gave up and to come back to his clinic in the morning. He didn't know what else to do outside of surgery or taking Jason's eye out. They handed me some diuretics for Jason to continue to take at home, 3 types of eye drops, and told me to ramp up his pain meds a lot. We finally made it home at 11:59 PM Christmas Evening. Oh Boy! Jason and I were very depressed about missing Christmas. He was in pain and we had both been looking forward to Christmas for weeks, we were heartbroken. Thank god the rest of the family was there to support us. I don't know what we would have done without them. It was definitely one of the most stressful and difficult days we have been through so far. I was starting to feel sick, the stress from seeing my husband in so much pain and being in the ER for 10 and a half hours was starting to take a toll. I asked if Terry and Marjorie could take Jason into the clinic in the morning. When we woke up, Jason's eye was extremely red, and very, very swollen. It looked like a severe allergic reaction. I got Jason dressed and Marjorie and Terry took him to the clinic along with my Dad.
You will have to read Marjorie's next blog to hear all the details from the clinic visit. It sounds like after much hassle, multiple Opthamologists looked at and discussed Jason and they were able to get in some radiologists that were on-call to come in and they all decided it was time for Jason to start radiation in his left eye to shrink the tumor and get him out of pain. My Dad called me and told me the plan, and the rest of us hurried to the hospital to be there for Jason. They did a CT scan on his eye so they knew exactly where to target the radiation. They made a mask to protect the rest of his face. Then they gave him his first radiation treatment. The radiation treatment itself only took about 15 minutes. There was quite a bit of prep time, but in the future everything will be already set up and should go much quicker.
When we finally got home, it was about 4:30 in the afternoon. It was finally time to open presents!!! Unfortunately, Jason was pretty doped up from the high amount of morphine and dilaudid we had to give him to try to keep him as comfortable as possible. He could barely stay awake. We decided to let him open all his gifts first so he could go back to sleep. We both made out! He got Rock Band 2 complete with a bass guitar and cymbal expansion pack. We both got a really nice Garmin GPS. We have been spoiled using Marjories the whole time we have been in Houston so now we will have our own. We both got a multitude of great giftcards, books, Jason got a video game (Gears of War 2) and computer game (Spore), and I got a pair of comfy boots, a pretty necklace, scarf and hat. We also got Wall-e and Dark Knight on Blu-Ray. Jason got me a beautiful set of pearl earrings I will forever cherish. I think everyone was pretty happy with their gifts. Santa was good to us!
Thank Yous
I have so many people to thank. I planned on calling a lot of people on Christmas day, but unfortunately that didn't work out. We got quite a few gifts in the mail right before Christmas and that was great because Christmas itself didn't go so well. I would love to send out thank you notes to everyone, but the upcoming week is going to be very busy. Jason is scheduled for radiation appointments every single day including over the weekend and I have to work really hard at getting him admitted into the TIL study as soon as possible. So for now, consider this my deepest and sincerest "Thank You!" You are all much loved and appreciated.
Jason and I wanted to thank Zack and family for the amazing box of presents. The fudge was delicious that I assume Lauren made. I can't believe it managed to stay cold! Jason and I had a lot of fun eating the types of candies we haven't had in years. The teas were great too. My mom and I are hooked on the ginger tea, and I just tried the sugar plum last night and loved it. I will have to buy more of those if I can find them. I am a little worried about the puzzles, but Jason is excited. Jason and Marjorie had to talk me into doing a 1000 piece puzzle last time, and now we have 2 different Van Gogh 2000 piece puzzles. I'm a little apprehensive, but the rest of the Jensen's are puzzle people and are up to the challenge. We will post pictures when (if?, hehe) we get each puzzle completed. Thanks again for everything!
Thank you Andy for the great Vegetarian cookbook from Sonoma. I've only had a chance to glance at it because of everything that has happened, but it looks like there are some delicious recipes. I particularly like some of the soup recipes and I think they will be very nutritious for Jason. We also really liked the kind message you wrote inside.
My Grandpa doesn't have Internet, but he sent a very generous card and I wanted to thank him and send him all my love and tell him I miss him.
Thanks to the Beals for the gifts from Hawaii. The pancake mix sounds like it will make delicious pancakes and the body spray smells like I'm on a tropical island.
Deven, Jason wanted to thank you for the gift card. It was very generous of you! I hope you and your family had a great Christmas and that Santa was good to Katie!
I also wanted to re-thank the Woods. My sister mentioned your gifts in her blog, but I wanted to thank you too. I will take a picture of the personalized puzzle of our house when we get it completed so you can see what it looks like. That was a great gift idea!
I was also hoping to call the Croaks and wish them a Merry Christmas, but since I wasn't able to, I will do it now. I hope you had a great one!
Also, Merry Christmas to the Domers and Culls! We missed you guys but heard you had a good time at Carols house.
Last but not least, I want to thank Marjorie, Terry, Mom, Dad, Becky, Cora and Lorren. I don't know what Jason and I would have done without you here for us on Christmas. Things did not go how we had planned...we never even got the chance to make the Christmas dinner we planned, but we managed to have a great week with you visiting and your support got us through a very difficult couple of days. Jason and I are very lucky to have Team Jensen!!! We also loved all the wonderful presents you showered us with!
Jason got through his second radiation appointment today just fine. He has been sleeping most of the day. He is still on a lot of pain medicines which is probably why he is so sleepy. He did say the pain went down from an 8 to a 5 so that is a great start! Unfortunately, he will lose his vision permanently in his left eye and there is a risk of losing his eye itself as a side effect from the treatment, or they might have to surgically remove his eye and the tumor if the radiation doesn't work. Since the pain has decreased, I am thinking that the radiation must be working so I am very hopeful he will get to keep his beautiful left eye. I also had the Opthamologist do a thorough examination of his right eye and it is perfect. No sign of any metastasis so that is good news! Sorry for the very long blog and Merry Christmas!
Tuesday, December 23, 2008
Disco Penguin and "the bling" awards



Hi! Becky here, reporting from Houston (taking over blog duty for a few days to give Team Jensen a break)...
The Stradleys flew in last night and Terry flies in tonight at 10pm. Our Christmas party is almost complete. The Houston residence is full of beautiful decorations and Christmas treats. Today we have been hard at work decorating ornaments, watching movies and eating fudge, walnut logs and other delicious Christmas goodies. Packages for Team Jensen have been arriving daily and are much appreciated (although we are still anxiously awaiting Aunt Carol's cheese!).
Today - Jason won the award for adding the most bling to a Christmas ornament (adding bling is Debby terminology for the liberal use of glitter). His bejeweled and glittered Xmas present ornament beat out my disco penguin and Debby's Christmas Liberty Bell (complete with crack). I am including a photos of Debby and Jason in their Santa hats, Jason making his winning Christmas ornament and all of the rest of us hard at work preparing the house for Christmas.
Team Jensen would like to thank Aunt Patti, Uncle Dave and Cousin Christina for the anniversary puzzle of their home, the gift card, the walnut logs and the Hillary Clinton bobble-head. The new Secretary of State is now keeping watch on the mantle.
We wish everyone a merry Christmas! Continue keeping Team Jensen in your thoughts and prayers.
Saturday, December 20, 2008
"I do whatever Jason tells me to do"
Jason's aunt and uncle, Cora and Lorren (Terry's brother and sister-in-law), got here yesterday - by train. They're making Christmas ornaments in the picture, as are the rest of us tonight. And we put Lorren to work in the kitchen, making a lentil soup. It was wonderful!

We received a great gift yesterday - from Toni, one of my co-workers - see the pictures. It was so much fun to open - refrigerator magnets, button pins, the t-shirt, a pillow and a bumper sticker! The mug says "I do whatever Jason tells me to do". Jason immediately gave that one to Debby! And oh how true was the refrigerator magnet with Jason's To Do List - how did you know that Toni? Thanks so much!

We received a great gift yesterday - from Toni, one of my co-workers - see the pictures. It was so much fun to open - refrigerator magnets, button pins, the t-shirt, a pillow and a bumper sticker! The mug says "I do whatever Jason tells me to do". Jason immediately gave that one to Debby! And oh how true was the refrigerator magnet with Jason's To Do List - how did you know that Toni? Thanks so much!
Thursday, December 18, 2008
Generous Friends and Family!
We have the most wonderful friends and family. Packages have been arriving all week and we have gotten the nicest gifts. We got a ton of these Livestrong mugs from Kristy which is perfect timing for when our families come to visit, because we weren't equipped with enough mugs. There are tall mugs with lids and fat shorter mugs that are great for morning coffee or tea. We absolutely love them!
We also got 2 care packages from family members. Jason's Aunt Carol send us our favorite potato chips from Ohio and we heard a rumor that some delicious cheese is on its way...we are so excited.
Jason's Aunt Kathy, Uncle Bob and cousin Raylene sent us a huge box filled with Christmas decorations, candy and ornaments. This is a picture of the beautiful wreath that Kathy made herself. MD Anderson had an auction of Christmas wreaths and we discussed purchasing one, but Kathy's wreath was much prettier than any of the ones we saw at the hospital. Our Christmas tree is now full of the cutest ornaments...and we now have some decorations to put up around the house. It now feels like Christmas at the Jensen Houston townhouse thanks to the Becerras!!! We even got two Santa hats that you can decorate. Jason and I will work on decorating them and will take a picture with them on once they are finished.
Marissa sent us an amazing manger scene to help us get in the Christmas spirit. The box was huge. We couldn't believe she had sent a whole manger scene! It came the day after the army men, so we were cracking up when we read the card and it said the army men were to protect Bethlehem since it can be a dangerous place.
This is the display I made for Jason's army men. The sign says "160 Million Spartans Unite!" This will be what Jason's T cells look like when they let them loose in his body to fight the cancer. The cancer doesn't have a chance!
And finally for Marissa's benefit, here is her vision of the army men protecting Bethlehem. We could only spare a few, the rest have to represent Jason's T cells.

Jason has his appetite back so we are hoping that he is gaining some weight back. He is still having a lot of trouble with his legs, mostly from pain and swelling. We have been taking multiple short walks each day and each time we try to go just a little bit further, but it has been pretty tiring for Jason to get around. Marjorie has been really busy shopping and getting everything ready for our visitors. I have been trying to help, but at the same time spend as much time as I can hanging out with Jason, since that is the most important part of my day. He thinks I run around too much, I guess I take after my dad a bit in not being able to sit still for too long. So I've been trying to sit back and just enjoy the day when I can....a good lesson for all of us during this busy and sometimes stressful time of year! The most important thing is just spending time with family!!!
We also got 2 care packages from family members. Jason's Aunt Carol send us our favorite potato chips from Ohio and we heard a rumor that some delicious cheese is on its way...we are so excited. Jason's Aunt Kathy, Uncle Bob and cousin Raylene sent us a huge box filled with Christmas decorations, candy and ornaments. This is a picture of the beautiful wreath that Kathy made herself. MD Anderson had an auction of Christmas wreaths and we discussed purchasing one, but Kathy's wreath was much prettier than any of the ones we saw at the hospital. Our Christmas tree is now full of the cutest ornaments...and we now have some decorations to put up around the house. It now feels like Christmas at the Jensen Houston townhouse thanks to the Becerras!!! We even got two Santa hats that you can decorate. Jason and I will work on decorating them and will take a picture with them on once they are finished.
Marissa sent us an amazing manger scene to help us get in the Christmas spirit. The box was huge. We couldn't believe she had sent a whole manger scene! It came the day after the army men, so we were cracking up when we read the card and it said the army men were to protect Bethlehem since it can be a dangerous place.
This is the display I made for Jason's army men. The sign says "160 Million Spartans Unite!" This will be what Jason's T cells look like when they let them loose in his body to fight the cancer. The cancer doesn't have a chance!
And finally for Marissa's benefit, here is her vision of the army men protecting Bethlehem. We could only spare a few, the rest have to represent Jason's T cells.
Jason has his appetite back so we are hoping that he is gaining some weight back. He is still having a lot of trouble with his legs, mostly from pain and swelling. We have been taking multiple short walks each day and each time we try to go just a little bit further, but it has been pretty tiring for Jason to get around. Marjorie has been really busy shopping and getting everything ready for our visitors. I have been trying to help, but at the same time spend as much time as I can hanging out with Jason, since that is the most important part of my day. He thinks I run around too much, I guess I take after my dad a bit in not being able to sit still for too long. So I've been trying to sit back and just enjoy the day when I can....a good lesson for all of us during this busy and sometimes stressful time of year! The most important thing is just spending time with family!!!
Tuesday, December 16, 2008
Tuesday
Just a quick post -
Since Jason's still having problems with walking, Debby picked up a used wheelchair so he can get out of the house once in awhile.
We got out yesterday to see Quantum of Solace - we all liked it. We hope to get out tomorrow to pick out a small Christmas tree for our condo.
We're looking forward to having our families here with us over the holidays!
Since Jason's still having problems with walking, Debby picked up a used wheelchair so he can get out of the house once in awhile.
We got out yesterday to see Quantum of Solace - we all liked it. We hope to get out tomorrow to pick out a small Christmas tree for our condo.
We're looking forward to having our families here with us over the holidays!
Saturday, December 13, 2008
Toy Soldiers, Flying Monkeys, and Bugs

We've had some cold nights this week so we have been making good use of the fireplace. We thought after Jason's paracentesis, he would be lighter and have more energy and would be able to do a lot more walking. This didn't quite work out the way we hoped. Before and after the procedure, I had to hold off on giving him his Lovenox shot, which is a blood thinner to help his deep vein thrombosis (blood clots). Well, his left leg became huge and extremely painful the morning after the paracentesis. It turned purple from lack of circulation. I had to massage his feet to get the blood moving and put on a compression sock. He has been having to lie down most of the day with his leg raised up on 3 pillows. His leg was a little less swollen this morning so keeping it raised has been helping but he says it is still very painful. I talked to a nurse at the hospital and she said it will get better once the Lovenox kicks in again. We are still waiting...
This is a picture of a giant bug we saw on our window. The picture doesn't do him justice. He was at least 2 inches long and completely disgusting. See what you are missing by not living in Houston?
Marissa sent us 160 million Spartans, or rather, toy soldiers for Jason to play with and to be symbolic of our hope for the new treatment. Jason had fun organizing them and taking this picture.
Kristy sent us a box filled to the brim with christmas presents. We were naughty and opened it early. We got the full Stanley Kubrik collection of DVDs...awesome! We got 2 new puzzles and a puzzle roller so we can roll up the puzzle that we are working on and put it away. This will be really useful because we tend to take up the whole table with our puzzles and can't use it for anything else. Jason got 2 comfy pants to wear around the house. We got a variety pack of flavored teas (yummy, I'm becoming a tea addict). But the best and funniest thing we got was a whole slew of flying monkeys. These were to be placed around the house so Jason would find them one by one. Well, since he can't walk right now and I get him everything he needs, I decided to let him play with them all today...which he did. This picture is "post flight"...you should have seen the swarm of monkeys flying through the air. It was great! We can't wait for Kristy to come back and visit because she is going to have flying monkeys aimed at her at all hours of the day and night.
Marjorie and I went to Michaels to find some Christmas ornament making kits. I thought I'd put the family to work when they come out to visit to help us fill our tree with ornaments. I found the little pills that you put into warm water and they turn into spongy creatures. These are from the bug collection that I bought for Jason and I to play with. We are easilily entertained. We have been playing with shrinky dinks also. I don't know if anyone remembers those, but you can buy the paper at Michaels and they are a lot of fun!Wednesday, December 10, 2008
Lighter and Whiter in Houston
Jason went in for the paracentesis today. Everything went well this time. He said it wasn't too bad. They took 2-1/2 liters of fluid from his abdomen. So hopefully he'll start feeling better and be able to eat more.
We have snow in Houston! We were on our way home from the hospital and what we thought was rain was actually snowflakes. We had found out that it doesn't snow in Houston very often – usually only about every 4 years – and the last time it snowed was 4 years ago.


We let Jason pick out this 1,000 piece puzzle at Toys R Us – he was the only one who thought it was easy.

Marjorie
We have snow in Houston! We were on our way home from the hospital and what we thought was rain was actually snowflakes. We had found out that it doesn't snow in Houston very often – usually only about every 4 years – and the last time it snowed was 4 years ago.


We let Jason pick out this 1,000 piece puzzle at Toys R Us – he was the only one who thought it was easy.

Marjorie
Tuesday, December 9, 2008
The Spartans Are Back!
We had an appointment with Jason's oncologist, Dr. Kim on Monday and we were expecting to be admitted to the hospital for Jason's 4th course of biochemotherapy. Before his appointment, I called the TIL study research coordinator and found out some great news. Jason has 160 million T cells frozen and ready to be used to fight his cancer. Only 50% of melanoma patients successfully grow T cells, so we feel very fortunate that his grew and we are able to participate in this phase 2 clinical trial. We also know that although the biochemotherapy seemed to be helping with tumor stability, he has 3 new small subcutaneous lumps since his last checkup. So we discussed it with Dr. Kim and we all agreed that the biochemotherapy was not working as well as we had all hoped.
There is some preparation that needs to take place before Jason can start the TIL study. Mostly it has to be coordinated with insurance and he needs to be re-staged. This will include an MRI and more CT scans. The only exclusion criteria for this clinical trial is brain metastasis, so we have to pray that there are still no tumors in his brain. So far, we have been very lucky with that. After the re-staging, we should be all set to start this new treatment on December 29.
The treatment will consist of 7 days of chemotherapy to wipe out his immune system. Then they infuse the 160 million T cells. Then he has to undergo high dose IL2, as much as his body can tolerate. We are all a little apprehensive about the high dose IL2, including his doctor, since Jason had so many problems with it in the past. The T cells and IL2 should take an additional week if things go smoothly, so the total treatment should take 2 weeks in the hospital, 2 weeks of recovery, and the cycle will repeat once more if all goes well.
I am thinking that it won't be as bad as before. My hypothesis is that he was showing a lot of autoimmune-like symptoms before. This is because the IL2 ramped up his whole immune system and this probably lead to his immune system attacking his internal organs, ie. kidneys. (He is famous at the hospital for the kidney trouble he had and the fact that he was moments away from dialysis). The oncologists got together to discuss whether Jason should do this study or not. I think this treatment will go better because his immune system will be wiped out, so in theory, only the specific T cells should be ramped up and should attack the tumors and not his organs. Dr. Kim said this was all very experimental, but thought there could be some merit to what I think. He also said that right now, they don't even know if the IL2 is completely necessary for the T cells to work. Or it might only take one or two doses to get them going which I know Jason's body can handle.
So the Spartans are back!!! 160 million Spartans ready to attack! Tomorrow, we are going to attempt to get the paracentesis again (stomach draining). This will hopefully help Jason to eat more and gain some weight. Our main goal for the next couple weeks before the clinical trial starts is to get him as strong as possible and to get him back to a healthy weight. That way his body will be ready for everything that will be thrown his way. He is so strong willed and has endured so much already, so we know he will have no problem with this treatment and we are very optimistic. The TIL study is slated to be one of the most promising new cancer treatments being studied for melanoma and a variety of other cancers.
There is some preparation that needs to take place before Jason can start the TIL study. Mostly it has to be coordinated with insurance and he needs to be re-staged. This will include an MRI and more CT scans. The only exclusion criteria for this clinical trial is brain metastasis, so we have to pray that there are still no tumors in his brain. So far, we have been very lucky with that. After the re-staging, we should be all set to start this new treatment on December 29.
The treatment will consist of 7 days of chemotherapy to wipe out his immune system. Then they infuse the 160 million T cells. Then he has to undergo high dose IL2, as much as his body can tolerate. We are all a little apprehensive about the high dose IL2, including his doctor, since Jason had so many problems with it in the past. The T cells and IL2 should take an additional week if things go smoothly, so the total treatment should take 2 weeks in the hospital, 2 weeks of recovery, and the cycle will repeat once more if all goes well.
I am thinking that it won't be as bad as before. My hypothesis is that he was showing a lot of autoimmune-like symptoms before. This is because the IL2 ramped up his whole immune system and this probably lead to his immune system attacking his internal organs, ie. kidneys. (He is famous at the hospital for the kidney trouble he had and the fact that he was moments away from dialysis). The oncologists got together to discuss whether Jason should do this study or not. I think this treatment will go better because his immune system will be wiped out, so in theory, only the specific T cells should be ramped up and should attack the tumors and not his organs. Dr. Kim said this was all very experimental, but thought there could be some merit to what I think. He also said that right now, they don't even know if the IL2 is completely necessary for the T cells to work. Or it might only take one or two doses to get them going which I know Jason's body can handle.
So the Spartans are back!!! 160 million Spartans ready to attack! Tomorrow, we are going to attempt to get the paracentesis again (stomach draining). This will hopefully help Jason to eat more and gain some weight. Our main goal for the next couple weeks before the clinical trial starts is to get him as strong as possible and to get him back to a healthy weight. That way his body will be ready for everything that will be thrown his way. He is so strong willed and has endured so much already, so we know he will have no problem with this treatment and we are very optimistic. The TIL study is slated to be one of the most promising new cancer treatments being studied for melanoma and a variety of other cancers.
Friday, December 5, 2008
Mom and Dad's visit to Houston
Marjorie flew home to San Diego on Wednesday morning and my parents flew in Wednesday afternoon. We took them on a driving tour of Houston and showed them some of the really nice neighborhoods, and some of the not so nice areas of Houston. Jason made a really good crock pot pinto bean soup for dinner. Soup was great because it was a cold and rainy day. Then we watched Ironman and went to bed early because Jason had to be at the hospital early in the morning.
On Thursday, we first went to the diagnostic lab and Jason got his blood drawn. Then we dropped my parents off at the Houston Museum of Fine Art, since only one person could be in the room during Jason's paracentesis procedure (stomach draining). We didn't want my parents to be bored and stuck in the waiting room. Back at the hospital, we went to the Interventional Radiology department and got there an hour early, but luckily they took us back right away. We figured we would be in and out of there in no time. Boy were we wrong! They informed us that one of the blood tests wasn't done that morning. So they gave Jason a catheter in his arm... after many tries and 2 different nurses (he now has a huge bruise there). Then they pulled blood from it and sent it off to the lab. They told us the PT test would take an hour to be completed and then the doctor would do the procedure. We sat there for 3 hours while many patients came and went and we were just ignored. I kept asking our nurse about the test and he kept saying it wasn't done yet. Finally, I started complaining and he made some phone calls and found out Jason's blood was sent to the main building and the instrument needed to run the test was broken. So nice of them to tell us after we had waited there for 3 hours! They expected us to continue waiting. The doctor refused to do the procedure without having the test results. I told them no way. I made the nurse take out Jason's catheter and we took off. I told them that Jason has very few precious recovery days and we weren't going to spend one of them at the hospital waiting for blood work that might or might not ever get done. Especially when it was their fault that is wasn't ordered in the first place.
Jason and I were both in pretty sour moods. My parents had walked from the art museum back to the hospital and were waiting for us in the lobby. They suggested we go out and grab something to eat. We thought that was a good idea and would hopefully cheer us up. We decided to go to Chuy's. It is a Tex Mex restaurant that our landlord highly recommended. Lance Armstrong also spends almost a whole chapter in his book talking about how great it is. We agreed with both of them. We all really liked the food and the atmosphere was festive and cheerful. The burritos were huge. Jason could only eat half, but it was good enough to take the rest home.
When we got home, I wrote 3 letters of complaint and sent them off to various people at the hospital. That made me feel a little better. Then I argued a bit with insurance to get that out of the way. We took naps while Jason played Call of Duty on the xbox 360, and then we all played some Texas Hold'em and watched episodes from the first season of Saturday Night Live.
Today we had a leisurely morning and then took a day trip to Galveston. We saw the bay where the cruise terminal is located. We also saw a tall ship from 1877 called Elissa which was impressive. We bought a new puzzle to put together at the gift shop. Today was very cold, so most of our tour was spent inside the car. There is still a ton of hurricane damage on the island so we saw that, then had a nice lunch at a delicious deli located on the strand. They had amazing vegetarian chili and sandwiches made with really good bread.
This evening, I tortured everyone with Fred Claus (not recommended, even on blu-ray). Then me, Jason, and my dad played more Texas Hold'em on our iPhones while my mom read her mystery. We are not sure what we are going to do yet tomorrow. Unfortunately, we have to drop my parents off at the airport in the evening. They will be missed! But Sunday we get Marjorie back so that will be good! Jason has been feeling pretty good lately. Its a shame we have to go back into the hospital for more chemo on Monday. We'll try to post again before then. We miss everyone!
On Thursday, we first went to the diagnostic lab and Jason got his blood drawn. Then we dropped my parents off at the Houston Museum of Fine Art, since only one person could be in the room during Jason's paracentesis procedure (stomach draining). We didn't want my parents to be bored and stuck in the waiting room. Back at the hospital, we went to the Interventional Radiology department and got there an hour early, but luckily they took us back right away. We figured we would be in and out of there in no time. Boy were we wrong! They informed us that one of the blood tests wasn't done that morning. So they gave Jason a catheter in his arm... after many tries and 2 different nurses (he now has a huge bruise there). Then they pulled blood from it and sent it off to the lab. They told us the PT test would take an hour to be completed and then the doctor would do the procedure. We sat there for 3 hours while many patients came and went and we were just ignored. I kept asking our nurse about the test and he kept saying it wasn't done yet. Finally, I started complaining and he made some phone calls and found out Jason's blood was sent to the main building and the instrument needed to run the test was broken. So nice of them to tell us after we had waited there for 3 hours! They expected us to continue waiting. The doctor refused to do the procedure without having the test results. I told them no way. I made the nurse take out Jason's catheter and we took off. I told them that Jason has very few precious recovery days and we weren't going to spend one of them at the hospital waiting for blood work that might or might not ever get done. Especially when it was their fault that is wasn't ordered in the first place.
Jason and I were both in pretty sour moods. My parents had walked from the art museum back to the hospital and were waiting for us in the lobby. They suggested we go out and grab something to eat. We thought that was a good idea and would hopefully cheer us up. We decided to go to Chuy's. It is a Tex Mex restaurant that our landlord highly recommended. Lance Armstrong also spends almost a whole chapter in his book talking about how great it is. We agreed with both of them. We all really liked the food and the atmosphere was festive and cheerful. The burritos were huge. Jason could only eat half, but it was good enough to take the rest home.
When we got home, I wrote 3 letters of complaint and sent them off to various people at the hospital. That made me feel a little better. Then I argued a bit with insurance to get that out of the way. We took naps while Jason played Call of Duty on the xbox 360, and then we all played some Texas Hold'em and watched episodes from the first season of Saturday Night Live.
Today we had a leisurely morning and then took a day trip to Galveston. We saw the bay where the cruise terminal is located. We also saw a tall ship from 1877 called Elissa which was impressive. We bought a new puzzle to put together at the gift shop. Today was very cold, so most of our tour was spent inside the car. There is still a ton of hurricane damage on the island so we saw that, then had a nice lunch at a delicious deli located on the strand. They had amazing vegetarian chili and sandwiches made with really good bread.
This evening, I tortured everyone with Fred Claus (not recommended, even on blu-ray). Then me, Jason, and my dad played more Texas Hold'em on our iPhones while my mom read her mystery. We are not sure what we are going to do yet tomorrow. Unfortunately, we have to drop my parents off at the airport in the evening. They will be missed! But Sunday we get Marjorie back so that will be good! Jason has been feeling pretty good lately. Its a shame we have to go back into the hospital for more chemo on Monday. We'll try to post again before then. We miss everyone!
Monday, December 1, 2008
Houston Zoo
















Yesterday we made a trip to the Houston Zoo. We thought it would be really small, because it is located in Hermann Park which we drive by all the time and it doesn't seem to be a very big park. We were surprised by the size of the zoo once inside. It was so large, that we didn't even see everything. We skipped the birds on purpose, but we also missed the african elephants, the wolves, the zebras, and the deer. Our favorite animals were the two grizzly bears and the tiger. One really sad statistic we read was that there are more tigers in the state of Texas than there are in the wild. That is pretty depressing. I also made us watch the monkeys for a long time because they are so amusing to me. The zoo was a lot of fun and it was nice to spend some time outside for a day.
Today was a sad day because we had to drop Terry off at the airport and we won't see him again until Christmas. We had a great weekend though and hopefully the time goes by fast until we see him again. On Wednesday, Marjorie is going home to San Diego and my parents are coming out to Houston for a few days. We are looking forward to them coming out and hopefully Jason will be feeling even better by then because he'll have more chance to recuperate. We're not sure what we will do when they come out yet, but we will keep everyone posted.
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