Why I Do What I Do

This article shows one of the major reasons I am so committed to fundraising for the Leukemia and Lymphoma Society. The drugs we have aren't as smart as the disease yet.
http://www.cityofhope.org/about/publications/news/Pages/city-of-hope-researchers-show-how-cancerous-stem-cells-manipulate-their-environment-to-enhance-their-own-growth.aspx?elq=0a8a28452e03456c9fd6d175daab9659
I think the researchers are making some great progress and I am excited to play a part in that. I remember Dr Oehler telling us that Tyler's leukemia had found a way to recognize his Dad's stem cells by dropping that part of their cell structure. I didn't ask if that meant that Tyler was now a woman (since his cells dropped the male half of their XY structure), but it definitely meant that his disease was way too smart for the treatment option of a bone marrow transplant.
Thank you so much for helping me fund a cure to blood cancers. The Team in Training group at the Madrid Marathon raised $1.5 million dollars with 266 athletes entered in the race. That is making a statement, isn't it? My friend Ruth put the best line on her race shirt... The shirts have a place for us to put why we are running on the back and Ruth wrote that her reason for running was "finding a cure, duh!". Same here, Ruth!

His Newest Nurse

While in isolation, Tyler will be drawing his own blood for labs and keeping his Hickman line clean with daily maintenance. You can actually see him preparing a saline flush as he finishes his first solo blood draw. While it would be scary to have to operate your own IV, the nurses must minimize the time they spend in Tyler's room. They will occasionally come into the room to administer IV drugs, but they limit their visits quite a bit. And of course, if there was an emergency, the medical staff would come into the room to care for Tyler.

There are definite pros to this isolation status, as Tyler should also get some peace and quiet without frequent interruption from nursing staff. Wendy (the nurse who coordinates the research study that we are participating in) says that Tyler should just view this as a brief vacation. He gets to do almost anything he wants for the next 5 days, which should help the time to pass more quickly.

In addition, anything that goes into the room will stay in the room. Tyler's appetite was fantastic today, so we saw this in practice. All of the food they bring is in disposable containers and Tyler is instructed to only take the pieces of food that he wants. He can actually dish himself up buffet style at the door of the room, so that he doesn't fill his trash container with lots and lots of food.

At 8:30 on Friday morning, Tyler measured only 58 mR/hr. He won't be measured again until Tuesday, with the weekend and holiday for Martin Luther King Day. We just hope that this radiation continues to work over the next several days.

Transplant -11 days and counting

Bubble Boy is Born

Tyler's infusion took place without complications today. It started about 1:30 and ran until just after 7pm. We were able to help him get settled in his room before the infusion started, but once they wheeled in the cart of radioactive materials we had to leave the room.

The picture at left shows Tyler in his room from our chairs on the other side of the hall. Although we have teased Tyler about becoming a bubble boy, you can see that he isn't really in any sort of bubble. He is in a regular hospital room (with another fantastic view) at UW. In order to keep the room radioactivity to a minimum, they have covered every surface that Tyler might touch in the course of his stay. You can kind of see the blue tape along the floor coverings and on his table. People emit radioactivity, but objects do not become radioactive unless they are touched by a radioactive person.

At the end of the infusion, Larry (from Nuclear Medicine) measured Tyler's radioactivity level to determine safe distances for visitors and nurses to stand outside Tyler's room. They measure the amount of radioactivity in milliRoentgens per hour (mR/hr). This is essentially the amount of radioactivity you absorb if you are standing 1 meter away for 1 solid hour. Tyler was emitting 77 mR/hr at the end of his infusion. He'll be isolated at UWMC until his radiation level is down to 7mR/hr, which we expect will be early next week.

With luck, the radiation and the antibody that they gave him today will search and destroy any leukemia in his body. Then we move on to the next step of this process...

Transplant -12 days and counting

T-y-l-e-r M-o-u-s-e

Tyler had his final blood test today and proved that he was not a mouse (or something like that)... Actually, Tyler had a HAMA blood test today to check for "human anti-mouse antibodies". The radioactive antibody that they will be giving Tyler actually comes from the white blood cells of a mouse, so they need to make sure that his body has not formed any antibodies (HAMA) against his potential treatment.

Tomorrow he gets his therapeutic dose. It will be another 5 hour infusion, following which Tyler will stay in the isolation room at UWMC for several days as his body processes the radiation it has received. We don't know exactly how long Tyler will have to stay there, as it will depend on how fast his body processes and eliminates the internal radiation. We expect him to be in the hospital at least through the weekend.

The Start of it All

We finally tracked down the LP results this morning and are THRILLED to report that Tyler's spinal fluid continues to be clear of any leukemia. Feel free to join us in our little happy dance at that news.

We reported to UWMC this morning at 8am to get the test dose of the radiolabeled antibody. The doctors will use the gamma scans and bone marrow tests this week to calculate the most effective dose to give Tyler when he gets his therapeutic (real) dose of next week.

In the picture on the left, you can see Tyler in the middle of the 5 1/2 hour infusion of the test dose. The lead box in the lower left contains a syringe with the radiolabeled antibody in it. On the right, Tyler is also getting lots and lots of saline to help his body process all of the radiation through without causing more damage than necessary.

Some of the premedications that they gave to him caused him to be pretty sleepy, so it's been a fairly quiet day for us. Neither one of us slept well last night, so I was pretty thankful to see that Tyler has two beds in today's room. The nurse was kind enough to let me use the 2nd bed and I took a nap this morning too. Now I'm a little less like the Wicked Witch of the West and Tyler is starting to remember why he married me.

We have another gamma scan tonight and then will head home and try to sleep it all off. They say that Tyler will likely feel a little achy and sore tonight and tomorrow, so it is important for him to rest as much as possible.

While we know there are big steps ahead for us, we are thrilled to finally be taking ANY steps towards his bone marrow transplant. Provided everything goes well this week, our next big thing will be next Thursday. Tyler is scheduled to get his therapeutic dose that day and begin his stint as Bubble Boy, the radioactive superhero of the University of Washington.

Day -21 and counting...

Tour of Fred Hutch Research Facilities

Tyler and I were invited to a Behind the Scenes tour of the Fred Hutchinson Cancer Research Tour as part of our work with the Leukemia and Lymphoma Society. One of the researchers that receives funding from the LLS actually spoke with us about the work they are doing to understand Leukemia cells better. His research is cultivating Leukemia cells specifically and testing their behavior so that we better understand them.

We also got to tour some of the other areas and learn about what Fred Hutch is doing in conjunction with the other members of the Cancer Care Alliance. I was fascinated by much of the work they are doing, but found that one area was particularly surprising to me. They talked about some research they are conducting to see if we can use skin cells to become a type of cell that can be used to create a body part. For example, if you had heart failure they would take a scraping of your skin, and then modify those cells to grow you a new heart. What a neat idea!

The ladies that we work with at LLS told us that they will be having more tours like this in the upcoming months, so if you are interested in taking a tour of Fred Hutch, please let me know.