Well last night I took Pat in to the hospital to be admitted. He has been running a fairly high temperature the last few days, and it hasn't gone away. With his white count being almost non-existent, it is very scary when he gets some sort of an infection in his body.
We were supposed to have an appointment with his doctor this morning to discuss his opinion. We wanted to talk to him about the different trial places we had to choose from, and which one he thought was our best option. Doctor Santala is an excellent doctor, and he had been treating Pat before we went to Oklahoma. We trust his opinion, and just wanted to know what he thought we should do. We also wanted to find out if there were any treatments he could get while we are here, to make his chances (of getting into some of these trials) better.
A few days ago, I read through some of the trials, and to my surprise, he can't even participate in two of the trials, because he fits the 'exclusion' criteria. One of them he is excluded from because he has an active infection, and is on antibiotics, and the other because he has Leukemia in his CNS (central nervous system). Wow...we definitely feel like the doctors in Oklahoma not only gave up, but really just don't care. She just handed us a stack of papers, and said 'be on your way, good luck.' Not literally of course, but I don't think she even went through any of these trials to see if they were a good fit for him, because if she did, I don't think those two would have even been printed off. I tried to read through them, and I'm not a doctor, so they are very confusing! I don't know what level his heart functions at, or what his liver functions at, or his lungs, and every other organ in between....infraction this, bilirubin levels that....I didn't even know where to begin! So with that all being said, I am glad Dr. Santala is going to look at them, and see if he can make sense out of it all.
I will keep everyone posted with progress. They drew some labs last night. I had them check his ammonia levels (the reason being, his levels were skyrocket a few weeks ago, and that is why he ended up in a coma). Just wanted to be safe, rather than sorry. Those levels are normal. His white blood cell count (wbc) was 0.0 and his platelets were low, so they did give him a couple units of platelets. Dr. Santala said this morning that they will run some more tests, and cultures. He hadn't had a chance to look over the trials, but said he would, and would let us know what he thought. That is really all I know right now.
On a more positive note...the Dinner the other night was great. It was so nice to see so many familiar faces! We had a pretty good turnout, and I'm glad Pat got to see how many people are behind him in this fight. We both even got to see people we haven't seen in years! Pat was exhausted by the end of the night (as to be expected). I was exhausted by the end of the night! All in all though, it was a good night. Thanks to everyone who was able to come, and to those who couldn't make it, but let it be known that we were in their thoughts....we appreciate it!
I will give updates as soon as I have them. Til next time...
Love
Jen :)
Monday, January 31, 2011
Wednesday, January 26, 2011
Get Together Dinner
Hello again :) Just wanted to let everyone know we are having a dinner this Saturday (January 29) at the Western Empire Emporium from 5pm until whenever. I'm sure we will be there for at least a few hours, so feel free to pop in at any time. It will be a very informal dinner. If you would like to buy dinner feel free, but don't feel obligated to, if you would like to just come and visit with us, that is fine. I'm sure Pat would really enjoy to see familiar faces, but if you don't know us, and you can make it, I think he would enjoy hearing that he has support from people he may not even know. He really needs some positive energy, and to know he has many people supporting him, so I hope to see many of you there!
Love
Jen :)
Love
Jen :)
Safe and Sound
Hello Everyone!
Just wanted to let you all know we have arrived in Billings MT! My Dad's girlfriend's Son, Jason, was able to get us some buddy passes to fly back home. We got in around 12:30 last night (monday). Whew, what a day! I was up packing and getting stuff ready to go on sunday night, and went to bed around 1 in the morning. Then we were back up at about 4:30 am, and left the house a little before 6 am. We drove to the Dallas airport (about 3 hours) and boarded the plane at about 1:30 pm. We flew to Seattle, arrived around 4pm, and got to see my Aunt, and two cousins, which was awesome! So glad they all came up to the airport to visit with us! We boarded the plane at about 8:30 pm, then flew to Bozeman, where we had to drop a few people off (due to another flight being canceled), and continued on to Billings. We were all so exhausted by the end of the trip! Pat did ok, but it definitely took a lot out of him to be 'on the go' for that long.
It feels so good to be back home! We have already seen a few faces that we have missed! We are trying to plan a get together dinner, so we can see more people at once, since we are only here for about a week. So although it will be a draining night, it will be so good to see so many familiar, and supportive faces :)
Oh, and just to clarify to everyone...we are not moving back to Montana, yet. We are just here to visit for about a week. Then we will head back to Oklahoma City. Once we figure out which trial we are going to try, we will pack up all of our stuff (again) and move to another state (again).
I want to thank all that have shared this blog with your friends! There are people out there helping us out that we don't even know! How awesome is that?! So keep it up everyone :)
Well I better get to bed...long week in front of me :) Til next time...
Love
Jen :)
Just wanted to let you all know we have arrived in Billings MT! My Dad's girlfriend's Son, Jason, was able to get us some buddy passes to fly back home. We got in around 12:30 last night (monday). Whew, what a day! I was up packing and getting stuff ready to go on sunday night, and went to bed around 1 in the morning. Then we were back up at about 4:30 am, and left the house a little before 6 am. We drove to the Dallas airport (about 3 hours) and boarded the plane at about 1:30 pm. We flew to Seattle, arrived around 4pm, and got to see my Aunt, and two cousins, which was awesome! So glad they all came up to the airport to visit with us! We boarded the plane at about 8:30 pm, then flew to Bozeman, where we had to drop a few people off (due to another flight being canceled), and continued on to Billings. We were all so exhausted by the end of the trip! Pat did ok, but it definitely took a lot out of him to be 'on the go' for that long.
It feels so good to be back home! We have already seen a few faces that we have missed! We are trying to plan a get together dinner, so we can see more people at once, since we are only here for about a week. So although it will be a draining night, it will be so good to see so many familiar, and supportive faces :)
Oh, and just to clarify to everyone...we are not moving back to Montana, yet. We are just here to visit for about a week. Then we will head back to Oklahoma City. Once we figure out which trial we are going to try, we will pack up all of our stuff (again) and move to another state (again).
I want to thank all that have shared this blog with your friends! There are people out there helping us out that we don't even know! How awesome is that?! So keep it up everyone :)
Well I better get to bed...long week in front of me :) Til next time...
Love
Jen :)
Sunday, January 23, 2011
Trip to Montana
Hello everyone!
Well, we are have a trip planned to come back home. We are set to leave tomorrow. My dad and his girlfriend were able to get us some buddy passes, the only downfall is that they are 'standby' tickets. So, we are driving to Dallas tomorrow morning, and hopefully we will be able to get on the first plane that leaves at 1:40 pm. The problem with flying standby, for those of you who don't know (because I had no clue!) is if the plane fills up, then we lose our spot on that flight, and have to wait for the next one, so on and so forth...
So if everything goes smoothly, we will board the plane at 1:40, and we have a layover in Seattle (and we are on standby in Seattle as well) then we will fly through to Billings. I believe if we make the first flights in both cities, we will be in billings around midnight on Monday (tomorrow). So everyone please pray that we get on those flights, not because it will be an inconvenience to be stuck at the airport, but because Pat is very weak, and is not going to do well stuck at the airport.
As far as when we arrive in Billings, we would like to see so many people, and there is going to be so little time! We were thinking about trying to coordinate a casual, low-key dinner or something, so we would be able to see many people at the same time. Similar to the fundraiser dinner we had before we left, but not necessarily with a fundraiser portion. If anyone has any thoughts or ideas, or would like to help coordinate it, please contact me! We can't wait to see so many of you!!
I would just like to say thank you to my Dad, Leah, and Pat's parents, Steve and Kathy for doing everything necessary to make this trip happen for us! We love all of you! Thank you!
I would also like to say thank you to those of you that have donated to our cause thus far! We truly appreciate everyone's efforts! Thank you!
Well I better get busy packing and such! It is going to be a really long day tomorrow!
Love
Jen :)
PS. It's so great to see so many people following this blog already! It warms my heart to know you all care so much! Please feel free to share this blog with all your friends and family!
Well, we are have a trip planned to come back home. We are set to leave tomorrow. My dad and his girlfriend were able to get us some buddy passes, the only downfall is that they are 'standby' tickets. So, we are driving to Dallas tomorrow morning, and hopefully we will be able to get on the first plane that leaves at 1:40 pm. The problem with flying standby, for those of you who don't know (because I had no clue!) is if the plane fills up, then we lose our spot on that flight, and have to wait for the next one, so on and so forth...
So if everything goes smoothly, we will board the plane at 1:40, and we have a layover in Seattle (and we are on standby in Seattle as well) then we will fly through to Billings. I believe if we make the first flights in both cities, we will be in billings around midnight on Monday (tomorrow). So everyone please pray that we get on those flights, not because it will be an inconvenience to be stuck at the airport, but because Pat is very weak, and is not going to do well stuck at the airport.
As far as when we arrive in Billings, we would like to see so many people, and there is going to be so little time! We were thinking about trying to coordinate a casual, low-key dinner or something, so we would be able to see many people at the same time. Similar to the fundraiser dinner we had before we left, but not necessarily with a fundraiser portion. If anyone has any thoughts or ideas, or would like to help coordinate it, please contact me! We can't wait to see so many of you!!
I would just like to say thank you to my Dad, Leah, and Pat's parents, Steve and Kathy for doing everything necessary to make this trip happen for us! We love all of you! Thank you!
I would also like to say thank you to those of you that have donated to our cause thus far! We truly appreciate everyone's efforts! Thank you!
Well I better get busy packing and such! It is going to be a really long day tomorrow!
Love
Jen :)
PS. It's so great to see so many people following this blog already! It warms my heart to know you all care so much! Please feel free to share this blog with all your friends and family!
Saturday, January 22, 2011
First Blog Post
Hi Everyone! Thanks for stopping by! Just to let all you Montana folks know...we are planning a trip to Billings. Pat would like to see his friends and family before we head out on this next journey. Hopefully we will be able to come next week, it's just going to depend on if we can get enough finances together etc. We hope to see many of you! I am still learning about all of this blog stuff, so everyone will just have to bear with me! :) Talk to you all soon!
Love
Jen :)
Love
Jen :)
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