~ Jordy makes a tough decision ~

Good morning!

Jordy would like all of you to know that he has made a decision about his leg reconstruction surgery. It is a HUGE decision to make. He has decided to have an operation called rotationplasty. It is very difficult to explain so I have included this link: http://www.medicaledge.org/2006april-1.html. Rotationplasty removes the knee joint and replaces it with the ankle. A prosthesis then completes the leg. I know this is hard to picture, so feel free to check out the video link above.

There are many advantages to this surgery and only one real negative . . . it looks different. There is also an extensive amount of rehabilitation and training the brain. The positives are amazing. Because there are no artificial parts, it will not wear out and there is less chance of infection. It is also easier to get good margins around the tumor. Another advantage is that the nerves and blood vessels are left intact. They are coiled up and remain in the leg. The most amazing aspect is the functionality. Jordon has met two young men who have had rotationplasty. They were very willing to share their stories. The list of activities they are able to participate in is incredible. Dustin hunts, hikes, rides four-wheelers, and even wrestles on his high school wrestling team! Carson played basketball in high school, works at Home Depot, and is currently training to do a tri-athelon. Jordy asked both of them if there was anything they can’t do, and neither of them could think of anything. Sometimes it takes longer or requires more practice, but eventually it works out. As many of you know, Jordon’s true love is cars. This operation will give Jordy the opportunity to pursue his automotive career aspirations. Carson told him he needed to be careful because unlike a natural leg, a prosthesis can scratch a car. He found this out when he scratched his brother’s car.

Dr. Krajbich will do the surgery. He has been doing this particular surgery for over 20 years. Everyone has told us that he is a top-notch surgeon. We have also met many staff members at Shriner’s. They are all very knowledgeable and helpful.

The surgery is tentatively scheduled for September 19. This depends on his chemo schedule and a few scheduling issues at Shriner’s. He will be in the hospital for a few days, but should be up on crutches before he comes home. Although we are all nervous about the surgery, it will be good to get rid of that tumor and move on.

I hope everyone has a good holiday weekend.

Annie

A visit to Shriners

8/25
Jordy & I trekked to Portland today. We visited Shriner’s Hospital to visit with Jordon’s care coordinator. Her name is Kelly and she is a nurse who is assigned to help us navigate the hospital and Jordon’s surgery. She was very helpful. It looks like Jordy’s surgery to remove the tumor and reconstruct his leg should happen between the 19th and 25th of September. This is all dependent upon his blood counts allowing him to start his chemo on time. His counts were pretty low today, but this was expected. He has to be pretty careful about avoiding germs right now.

Annie

Not much news, but an update anyway ~

Hello-

It has been a few days since the last update, and even though there is not much news, here is the latest. The doxorubicin and cisplatian (I’m not sure about the spelling) that Jordy received last week is hard on his stomach. He has not been particularly nauseous, but just lacks energy and appetite. I think he is back on an upswing though. He ate Arby’s (big surprise) on the way to the Salem Hospital yesterday and tacos for dinner. The trip to Salem was for his weekly blood work.

Monday we will head to Portland to visit Shriner’s for a meeting with Jordy’s care coordinator to talk about his surgery. We are also going to meet a young man that has endured the same journey that Jordy is on. We also have to stop by the oncology clinic for his weekly blood draw.

The rain is a nice change from the 100 degree temps a few days ago!

Annie

Jordy's home until September 1st!

Last night about 9:00 the nurse came in a told us that they were going to move us to the 9th floor (general, non-oncology floor). There was a newly diagnosed child who was there and the family was frantic. We could certainly empathize. Since there were no rooms empty, they decided Jordy was the least in need since he had just finished his chemo. Earlier they had asked us if we wanted to go home late or wait until morning. Jordy chose the morning, but when asked to move, we asked if we could just come home. The answer was yes, so we headed home about 10:00. It sort of disrupted our Olympic watching time, but other than that it was great to return home.

We are home until the first of September except for a couple of appointments here and there. If you would like to visit, give us a call first so we make sure we are home and Jordy is feeling ok. Most of the time he is really feeling pretty good, but his blood counts will drop in about a week, so he will have to take precautions to avoid illness.

On Aug. 23 we are moving our travel trailer to Wilsonville. It will be nice to have a “home” closer to Portland. It will be nice to be able to stay close to the hospital if we are discharged late again.

Stay cool,

Annie

Jordy still has a good appetite ~

As far as food goes, Jordy seems to like things with a fair amount of flavor (mexican, etc.). They
told us it is like someone who has smoked and lost their taste. We just try to avoid beans.
Right now things are pretty good. Jordy seems to tolerate the chemo fairly well. As you can imagine he has a good attitude. He just wants to know what he needs to do so he can get on with his life. He is amazingly nice and very smart. It suits him well.

Thanks for the offers of help and above all, your support of Jordy.

Jordy is doing pretty darn well with his chemo. He doesn't get much sleep with all of the fluids, but he hasn't thrown up this time! This is amazing considering that he ate 5 of the large individual bags of Doritos last night. Today he has spent most of the time sleeping.
I walked up the hill today and visited the Farmer's Market. It was great to smell strawberries and fresh peaches.

Annie

Jordy ok'd to start chemo.

8/11
Good afternoon!
Jordy is back at Doernbecher and ok'd to start his chemo. This is good news because after this session of chemo he will get a two week break!
Stay cool.
Annie

Jordy's looking forward to Pizza~

8/6
Hello-
Jordy is once again slow getting the chemo out of his system, but he should be able to go home tomorrow after his appointment at Shriner's in the afternoon.
Also, Jordy has not been able to check his e-mail this week due to computer issues, so if you have e-mailed him, he will be getting back to you this weekend.
One good thing about staying is that there is going to be Papa John's Pizza tonight for everyone in the unit!! Now that has Jordy a little excited. He also won an electronic golf game during bingo today. I will take credit since he was sleeping and I played for him.
Stay cool out there. It is always a steady 72 degrees in our world.
Annie

A note from Annie...

Hello-
Jordy finished his chemo infusion yesterday and is now getting it back out of his system. Yesterday he was pretty sick (and a little grumpy), but they increased his meds last night. He slept well and seems to be much better today. A good night's sleep is helpful to anyone!
Hopefully we will be home on Wednesday. He is scheduled to come back on Thursday, but I am guessing that will change.
Annie