Bone Scan Results

The bone scan results are in. Before I start, I should review our philosophy on everything. We have already received the bad news back in September, and we have decided that anything else is just information on how to proceed or how to deal with what is happening. We have to approach everything with this attitude because it is too devastating to keep getting blow after blow, when the end prognosis is no different. What it does is help us better understand what is happening, and it also keeps us calm when dealing with the info.

With that said, I say that is just our philosophy...it is hard to live that, as it is still difficult to hear the bad news.

Most of this is hard to explain, so if you think you're having trouble following or really understanding any of it, you're not alone. Dr. Anderson has answered all of our questions, and we feel that we understand all that we need to know.

The femur bones and tibia bones on both legs are showing some concern (thighs and shins). There are changes indicative of cancer, yet there are signs that contradict that too. Some changes could be related to the bad shape Brian's legs are in right now, and the fact that he has been on chemo, has terrible atrophy, has basically not been using his legs, and more. There is a spot on his left ankle, and one on his right hip. There are a few spots on his ribs that Dr. Anderson thinks look like early stage melanoma. His spine is clear, other than the spot at the base of his skull at the top of the cervical spine (neck). This spot only showed up on one angle, and Brian has no symptoms, so it is unclear if it is indeed melanoma.

His left hip joint appears to be infected. This is not connected to the huge pocket that starts at the knee and runs up the back of his thigh, then around the left side of the hip...in other words, he has this pocket on the outside of his hip bone, but also something going on with the joint itself. This could be cancer, but he thinks it is more likely an inflammation that might need drained, or it might be a picture that is actually what his hip looks like after having had that huge dose of radiation earlier.

So what do we do with that information? Well, Dr. Anderson feels we have one big problem (the infection) that is our immediate issue, and we need to just focus on that and move forward. He feels that we have three big options...

#1 - if the drain does its job and no other pockets need drained, they might be up for discharging Brian on Thursday, or keeping him overnight until Friday and doing the ipilumimab treatment then. If other pockets do need drained, that might still keep us on the same time frame. This all is relying on the fact that Brian is feeling better and the infection is under control, and that the trial allows him to have had an infection like this (they think it does, but they are checking).

#2 - if it takes longer to get over the infection because of the drain or just because he is taking longer to bounce back, we could delay the ipilumimab treatment until this Mon/Tues. or even as late as the Mon/Tues after Thanksgiving.

#3 - if by that Mon/Tues after Thanksgiving, Brian has still not bounced back, we will need to consider that we cannot move forward with the ipilumimab.

I asked if there were any other options because I didn't really like any of them.

Dr. Anderson feels strongly that we will be dealing with option 1 or 2. He is feeling pretty comfortable with how well Brian's body is responding to the antibiotics, so one of these two choices is most likely going to happen. He said if we go for option #3, it would solely be because of the infection and Brian's poor condition, not from what we found out regarding the melanoma.

Brian is running a temp of 101 tonight at 10:30, and we need to figure out why that won't stop, even with the antibiotics.

We said goodbye to one of the best nurses we've ever had today...we had her for the past 5 days, and she was just a blessing to us, with things being so hard. Those of you that know Brian...she is just like him with her sense of humor. Those of you at school have seen how he acts, and he just razzed her; and she dished it right back, probably like Cindy and Stephanie do at school when he drives them crazy. They were really hitting it off by today, and he is a little nervous about who he is going to get tomorrow. I know I say a lot about how much we love our doctors, but our nurses are the ones who really know what is going on and see the suffering, and give the long term comfort and support and care. We exchanged email addresses and hope to keep in touch, and she has this blog address to keep up on Brian's condition. Thanks Holly!

This evening was difficult, as Amberlea was crying and Tye was asking when we are coming to his house. I helped calm Amberlea down and Tim and Abby dosed out some extra TLC, and Abby said she was quickly off to sleep. Brian and I both sang Tye the Farmer in the Dell on speakerphone. He just giggled and thought it was so funny that I said the wrong thing. I learned that the wife takes the child, not the boy, and that the cat takes the rat, not the mouse. He corrected me, and then just laughed. He was off to bed and excited to go to school tomorrow. Hopefully, we can keep holding out for a few more days.

I did go to the cancer support group tonight. It felt good. I wish I could have shared more with people facing what I am, as the caregiver and a parent of young children. I hope to find that. They also gave me info on a support group they have for kids and parents, and I am meeting with the social worker tomorrow afternoon to discuss how this might help our children. They also have lots of resources, such as coloring books and journals, which I hope to be able to take home with me.

I tried to do a little Christmas shopping, which is turning out to be very emotionally draining. I'm not getting too far, and I think I'll be doing a lot online because I can hardly handle the Christmas decorations and Santa music. I love Christmas, and I am just struggling to get excited about it right now.

Many blessings for a day ahead that you find comfort, peace, and thanksgiving for the life you have,
Jenni

I call on the Lord in my distress, and He answers me. Psalm 120:1