The Daneman Family Blog

Well…I’m trying to see the positives in all this and there are  a couple…but it’s not lookin’ too cheery. This whole head mess is a mess…and controlling it is a problem. All I need is to nip it and I’m good otherwise…symptom-wise I’ve been great lately except for the head. The docs are kind of lost…they don’t know why but everyone has their theories. I’m really pissed and wish I could actually reap the benefits of  fat lawsuit especially towards the SCCA…I was supposedly tested for BRAF years ago and didn’t have it. Well now it’s almost a day late and a dollar short….stupid bastards. Well I just ate a little and feel a tad better but otherwise they’re just throwing drugs at me…and they seem to be working to a certain extent but not a real solution. I guess at this point I just wanna try and make it for BRAF…otherwise I don’t know how much longer I can deal with this. In my current state I don’t think I can even go to LA and they’re supposedly getting the trial up here in the next few weeks…we’ll see. If I can nip the headaches I can travel…that’s my only real complaint. Hospice seems like a good option right now because going to the ER every week just doesn’t work. That’s all for now I think…

I don’t really know where to begin, Allie has been in the ER 3 times in the last week and was admitted for a 2nd time Saturday morning. His pain in his head and neck are such that he has to be on a pain pump with dilaudid. After talking to the Doctors this morning and yesterday they have said things are only going to get worse. Allie has declined significantly since May. All of the disease has grown and there has been new disease. He has new brain tumors and large ones in other places. Things don’t seem to be slowing down. So, the Doctors suggested hospice to keep him comfortable to manage his pain and cut out all of the trips to the ER. We will hopefully have hospice come to our home Tuesday and go from there.  We still have not gotten the radiology report on the MRI they took so we are waiting on that perhaps that will be telling as to all that is going on.

I feel like I’m old and busted…..my back hurts, stomach feels like crap, an overall crappiness and then I woke up to another headache and had to go to the ER again last night. Luckily it was a quick 3 hour tour ’cause I think I nailed it early, otherwise this is really getting old. That’s twice in less than a week….we’re just experimenting at this point because the crappy doctor up here doesn’t have solid answers or time for me, what a crappy situation to be in. We have to call LA and see where we’re at and then what the next steps are….and tell them about my ER visit last night.  I’m back on roids ’cause I guess that’s the solution to the ipi going nuts which is real fun….that stuff just tears you up which could be contributing to my crappy  feeling. I don’t know anything anymore except that I’m down in the dumps and I need a break….from my body. That’s all for now…I need to eat and try and do something today.

Yesterday didn’t start too well and ended even worse. The night before started with some sweating, shaking, and diarrhea. Then I woke up, threw up, and tried to rehydrate with a little breakfast. Pretty soon after that I had a headache that started at 0 and went to 10 in like 20 minutes. I threw up again and was lethargic…couldn’t even wait for a ride to the ER. We had the flooring guys over so Jen couldn’t leave…so I got a bambulance ride to the U. Spent all day in the ER and then got admitted as a precaution. I’m feeling 100% better this morning and the docs feel that everything except the headache are side effects of the ipi (experimental drug) I’m on. We have some choices to try and avoid this again…the 2nd time in 3 weeks. Beyond that we’re still waiting until the results from the biopsy come back. That’s all for now…

What did you do today ? Well I had a tumor cut off while I was shootin’ the sh*t with the surgeon. I had him cut off a particularly nasty one…nothing wrong with getting some benefit from a little procedure right ? Anyway…now we wait a week or so for our next steps, hopefully I get in a good trial and we take it from there. We’re on our way home now…. Many thanks to Chris Rooke and his parents for letting us stay in their beautiful home and helping us see the sights around LA. It was also awesome to see Purcell, Angelica, Paxson, and Krishnan. Can’t wait to come back and see the LA Bros more…good times even though I wrecked skim boarding.

So due to scheduling snafus the biopsy didn’t happen today, were set for Tuesday morning first thing. Dr O’Day also needs more scans from the SCCA before he can give me a recommendation so we wont know anything until we get home. I told the doc that if I need to stay a few days longer for more tests,etc. no problem so we’ll see on Tuesday, most likely he’ll have what he needs. Once we figure out the treatment we’ll learn how often I need to be in LA or somewhere else and then the fun begins…coordinating and planning my visits or whatever we figure out as the best for the family. The funny thing is that the kids are all saying they like it down here…heh, so we’ll just see what happens.
Shifting gears we hit universal studios today with the kids…man that place has changed in a bad way, I don’t even recommend it. It’s all commercialized full of tourists that are rude, don’t pay attention, and are just annoying. We get to do some local stuff with friends tomorrow and probably the rest of the time we’re here.

So the appt went pretty well…Dr. O’Day is a very tall guy and is pretty laid back and easy going, reminds me of a Dr. Lonergan that specializes in melanoma. We went over my long history and laid everything out…he was actually astonished about a few things. I thought he was gonna start swearing that I hadn’t had a braf and ckit test. I need to do some research on them specifically but it’s basically testing certain qualities of the tumors…and then hit them with drugs that target those qualities. Makes sense and the fact that the ball was dropped kinda pisses me off…it’s like are we the doctors or are they supposed to be on top of my treatment ???? Anyway theres no point on dwelling on it…they wanna do a biopsy on one of my many subcu little buggers and test them for braf and ckit. Then the wonderful SCCA didn’t send cd(s)/dvd(s) of my precious scans to compare to the ones I brought with me so he can’t verify if I have new brain mets. If I have new brain mets I won’t qualify for some things. Once we get the biopsy results and verify my current condition he can give me something…he has a few options though. It was an overall positive experience in that he has things for me…whether I can do it at home, in LA, or even another institution is still unknown but we’ll figure that out soon. More to come and were off to universal after my biopsy first thing in the AM hopefully.

I’m on my way home after hanging out with my Dad for a week. Had a blast hanging out on the boat, saw my bro a few times, and even helped out my Dad with some networking issues at his business.
We are definitely living in the fast lane these days…a few days home and it’s off to LA to meet with the melanoma guru. This doc is supposedly one of the best in the country (so I can’t wait to meet him) and hopefully he’s got something for me. If he has something for me then the real fun starts…how often do I have to be in LA ? Well…depending on the frequency it changes everything…from being a frequent flyer to renting a place down there…..we’ll just wait and see what the doc has for me. Fingers are crossed I’ll be going/hanging out in LA a lot so I can see all my bros and family…we’re so isolated in Seattle it’ll be nice to see everyone. It’s weird to think about it but relocation is not out of the question, if this doc can save my life we’ll do what it takes as a family to keep me around.
Another weird thing is this god damn melanoma has gone so far that being away from Jen and the kids this week just hit me. I’ve kept busy all week so it didn’t hit me until I arrived at the airport…and I haven’t stopped crying, sporatically. Out of the blue for no reason I just start tearing up…I’m like “what the hell ?” but then I think I got it…I’m homesick. Well if it doesn’t stop then it’s something else…maybe all of this stuff rolled together. There’s gotta be some master plan leading us somewhere…we don’t know where it’s going but we’re in it until the end…how ever far out that is and whatever that end becomes. I know we’re all tired but we just take each day at a time…I guess that’s all we can do really.
Damn..I’m shaking my head, crying, listening to smashing pumpkins, and blogging in a plane on my way home…would have never seen this coming but based on the last 7.5 years I guess nothing is out of the question…more to come as our lives change around the next turn.

So I just did my 4th infusion in this compassionate study and now we’re off for 3 months. I called Dr Hide and left a message…I’ll keep it up and hopefully I’ll hear something relatively soon, we’ll see. Otherwise we’re gonna stay on this IVIG direction and see how that goes with some naturapathic stuff in the next 3 months…it’s amazing how fast things change around here.