Feet and Joints

Layne's feet have been hurting since Saturday. We're guessing too much standing at the party. He's having a hard time getting around. It's slow going.
This morning he woke up with joint pain. I'm not sure if it's been a gradual thing and it's bad enough that he's finally commenting on it...or if it's just starting. I do know he commented about possibly needing a wheelchair at the airport this week-end. Yea. Love it when we start out gimpy. As usual, we'll see how things go.

A Real Trooper

We're having our 'Layne's Still Alive Party' on Saturday even thought Layne's not feeling so great. He decided earlier in the week not to do the 5K that morning. He thought he'd at least be able to walk it. He wanted the whole family to participate together. The rest of us had already thought that it was off the schedule because we didn't have a plan and he wasn't feeling well. He still went into work yesterday (for a couple of hours) and to YM last night. He's a trooper.

Next Steps

Layne is already gone to Houston to start the newest clinical trial. I'm hoping the best for this one. The last one gave him an extra year. That's a good thing, right? I even got to see him run again. It was only a 5K - but, still. I say only not because that's a short distance for me but because it's a short distance for him. Although, at the time he did it - it was a pretty big deal. I'm glad Jacob got to run with him.

When Layne's gone I tend to stay up later and worry more. I tend to feel more alone. I realize more what it will be like to not have him around anymore. Sometimes it feels a bit empty...especially at night when the house is quiet and I'm used to having someone next to me. 

I feel bad he has to do so much of this by himself. I don't think I'd like to have the medical staff poking and prodding me without someone there for support. He does most of it on his own it seems. I'm planning on being there when he has the infusion done. It's hard to watch someone you love be put through that. He gets tired, pale, and sick. I feel a little helpless when all I can do is hold his hand that has gotten cold. I was able to get him food occasionally before - but, it seems like there have also been plenty of times when he didn't feel like eating anything. It's hard to see someone that I'm used to being healthy look exhausted and seem weak...someone that is supposed to be energetic but it takes too much effort to get themselves off the couch.

Well, on to bigger and better things. Or maybe just happier things. I guess I could just stick with - time to go be productive. (Productive...there's a post for another day. It's a bit questionable lately.)

Layne's Still Alive

We're having a 'Layne's Still Alive' party on September 20th. We thought it would be more fun than a funeral. He's already lived longer than the doctors thought he would. He originally commented about it for his 45th birthday, but has since decided that this one would work well. (Maybe we'll do one again when that time comes. I think originally he thought he'd make it that far. But, considering this really could be the last chance we have to do this - no better time than the present.) Our house is a bit 'space challenged' to make such a thing happen. So, we're going to be heading over to the house of some friends that offered to let us use their space. We are grateful. Layne would love to just 'hang out' and play some games. But, I don't think he'll have the time to sit and play a board game. He's invited people from work and yesterday he came home and told me he talked with his trainer at Huntsman about it. Layne's good at making friends with people. I also sent out Facebook invites to our ward and my 'friends' that might be close enough to come (at least I hope I got everyone). There are several people that aren't on Facebook that we'll need to invite individually. Maybe today would be good since it's only a week and a half away.
Today is the day Layne leaves for Houston.

Fall Weather

The weather has been cooling off a little bit lately. At least it seemed like that today. The fall weather that is coming made me think of Layne being in the 'Fall' off his life. Autumn is upon us. I'm not looking forward to winter and the cold that comes along with it.
I wonder what spring will bring. What will the new life be like for the rest of us. There are days that I already miss him.

Current Happenings

This blog has been neglected. It seems like there's so much to say and much of it needs background in order to make sense. I have some things jotted down in drafts - but, haven't edited/posted yet.
Currently, Layne is going to head to Houston this week to start a clinical trial at MD Anderson. We have had issues with insurance that are still being worked on. The team there and at Huntsman are trying to see what other details can be worked out in order to have our health insurance cover as much as possible. That being said, we will still reach our deductible and out of pocket maximums for this year. (We get to start all over again in January.) There are obviously also some travel costs associated with what we're doing. Layne will be there by himself at first and I will join him in time to be there after the infusion. He will probably need some care afterwards. We'll see how it goes and assess needs for future infusions as we go.
Layne feels good about the study scientifically. So, that helps. We'll see how long things last. After the first three infusions being done at MD Anderson he'll be able to switch off every other one with Huntsman. The only thing better would be to have all of the infusions taken care of here in the area instead of traveling. But, at least we can be grateful for an option.
We'll still being doing our usual 'learning' with the kids. They will be hanging out with relatives while we're both gone.
We are so grateful for the continued thoughts and prayers that come our way. Thank you. We have so many people offering to help and we appreciate it.

Insurance Coverage

Insurance will not cover the clinical trial at MD Anderson. There's the out of network factor because it's out of state. There's also the fact that 'ObamaCare' doesn't cover clinical trials. Layne's a little stressed about what to do...how to make things work. He's always so good about figuring these things out. I think in the end we end up paying less for things that some other people might. Well, at least when there are possibilities and options to look into. For example, when he finally finished grad school we had gone years in student housing, had four kids, and all of the school expenses for him. I think we did a thousand dollar loan once (it might have been more than that). We were done paying for all of that not long after he graduated. We also were able to obtain a home with a good credit rating for both of us.

In the case of all the medical expenses lately, Layne's been great about keeping up with all of it. Asking about charges and figuring out the best way to work things like life insurance, health insurance, and how cost of living can all be worked out. 

I'm a little nervous about the whole budget thing when he's gone. I'm involved with what's going on - but, he's always been the one that has figured out the ins and outs. There are things he's worked out that I wouldn't even think of - much less know about how to go doing it.

The issue for the day is how to have the trial covered. Or, maybe we just look for another trial. Hmm. What to do. What to do.