update

Just found out Friday that the insurance company is what is holding Donnie's appointment up. They said it could be up to 30 days before they make a decision on his chemo. I am so frustrated by our inability to control anything to do with his treatment. We are completely at the mercy of other people who have no sense of urgency whatsoever.

Stop Cancer T-Shirts

We still have Cancer T shirts for sale $10.00 each. Pink/Green/Grey
Also Team Donnie shirts still availible.
Let me know if you are interested.
Thanks,
Love to all
Robin

So frustrating

Here we are almost thru another week and still no news on Donnie's treatment and when he will start. They stressed that he needed to start it last week but can't seem to schedule it. It is so frustrating to KNOW that you NEED to be doing something and can't do anything about it. I wish that there was something that I could do to speed things along. All I can do is pray. I don't understand the hold up at all. I will post when I know more.

Chemo Update

Well we have an update of sorts from the doctor. Donnie spoke with his doctor here yesterday. Seems like he didn’t understand the Dr from MD Anderson or he didn’t explain it correctly? We were under the impression that he would have to take a four hour chemo every 2 weeks. Well that isn’t exactly how it works. He has 2 choices. He either can have a 3 day in patient treatment OR he can go for four hours and come home with a chemo pump for 2 days. The insurance will be an issue from what Donnie’s dr here is telling him. Donnie is going to call back at MD Anderson today and see if they can get it approved. I think they have a better chance than here. It is approx 15-20 thousand a treatment!!!!! And he would have to have 2 a month. And exactly what do they expect you to do if the insurance doesn’t cover it??? It is crazy. I have said it many times, I truly believe that there is or could be a cure for cancer. But there is no money in the cure, there is money in treatment. So I don’t know where we will be going from this point but I will keep praying and pushing forward.
Thank you to everyone for their love and support.
love to all
Robin

Update ( or non update)

Well we still don't know anything. Seems they have the orders here but are trying to find out if insurance will cover it. We should have just had them schedule in Houston for last week. This has been crazy. I wish I had more to post. I will update as soon as I know more.
love to all
Robin

Another Day

We are still waiting. Seems like we have been waiting forever. First we were waiting on MD Anderson to fax the orders, now we are waiting for the dr here to schedule the appointment. It has been so frustrating. I hate waiting (as if anyone didn't know that) I hate feeling like we aren't doing anything to fight this. As much as I hate to see him have chemo, I know that it is to fight this awful disease. I will post again when I have more news.

love to all

Robin

Update

Okay, here is what I know. Donnie is trying to get his appointments for chemo here. Then he will only have to go to Houston ( MD Anderson) for doctors appointments and scans. The doctor told him that he really needs to get his first one this week so we are moving quickly, we will just have to see how quickly they move. He is feeling ok. Other than being tired from the benefit. It really wiped him out but he wanted to be there all day. I think that he tried to thank every person that worked , came in, helped in any way personally. We are both so grateful and appreciative of everyones help and effort. I will post another update once I have more details. Love to all
Robin

A day for Donnie

Words cannot express how overwhelmed I am by the support shown to us from our friends,family and our community. A day for Donnie was a huge success. I think we ran 100 miles inside the recreation center yesterday. There was so many people there that I saw that I saw for 1 minute it seems like. I felt like I wanted to individually thank everyone there but it was such a crazy day, I never seemed to be able to. It couldn't have been done without a wonderful group of people who are my friends and family. Although I am not related to all them , they are ALL my family. I don't know what we would do without them. I can't thank everyone enough for the time that they donated to make the benefit a success. The people who came and worked booths, the people who donated sweets, crafts, the people who cooked, the bands who donated their time. I am completely overwhelmed and just can't express my gratitude enough. I hope everyone knows how much yesterday meant to us. Mostly for the support of everyone. I am truly touched by the support that has been shown for Donnie. It is a true testament to the wonderful person that he is. Thank you everyone for your time, your friendship, your support,your love and your prayers. We are truly blessed. love to all Robin

Finally, but not good news

Finally heard from the doctor. Donnie doesn't qualify for any trials. the tumor is still growing. No new lymph nodes though. they are suggesting a certain kind of chemo. He may not be able to get it here and will still have to go to MD Anderson to get it if he can't get it here. It will just be an overnight trip every 2 weeks. I don't know much else until we talk to the dr again. I am getting everything second hand from Donnie. I just can't even wrap my brain around anything right now. It has been a long week and the benefit is tomorrow. Hope to see everyone there. Please keep praying. we need it so much right now.
Love to all
Robin

Update or Non upate (they didn't call today)

I wish I could say that MD Anderson called today like they were supposed to but they didn’t . Waiting is so brutal.
I can’t walk in my house anymore. People have donated soo much stuff for Donnie’s benefit. It is very touching and quite overwhelming. We don’t know most of the people that donated. But you know, people can relate. Cancer touches so many people and it is such a dreadful disease. I just can’t believe there isn’t a cure. We as a country can come up with something for male pattern baldness, viagra, ridiculous other drugs for minute things. You cannot tell me that there isn’t a cure out there somewhere. But then again, there is no money $$ in a cure. there is MONEY$$$$$$ in treatment. I dont’ know but that is what I believe.
Hope to have an update for everyone that MD Anderson called tomorrow with a treatment plan.
And I hope to see everyone at the benefit.
Love to all Robin

Tomorrow

So today I prayed. I prayed for God to guide the doctors to find a treatment for Donnie. I don't even know what else to say. I am anxious about tomorrow and waiting for the call. I will update once I know something.
love to all
Robin

Still waiting

It seems like forever since we came back from Houston. Waiting is awful. I hate feeling like we aren't doing anything. We still had a good weekend though. Donnie played golf on Saturday. I am glad he was able to and the weather didn't make things too wet. It did ALOT of raining Friday night. Justin and Sara went to prom last night. They looked so nice all dressed up. I can't wait to get their pictures back. Courtney spent the night with Danielle and Shantel and Caley came over. Shantel went home around 10 and Caley stayed the night. She is growing so fast!! She will be walking before we know it. We had a good time with her. One thing, I think her Poppy spoils her/ LOL. Of course he does. I think we all do.
Anyway, just waiting for the doctor to call on Wednesday. Still getting ready for the benefit. I am hearing that the word is spreading like crazy. I hope so, I know how hard everyone has worked on this.
Love to all, I will update when I know something
Robin

Our trip

We left Monday morning for Houston, got to MD Anderson at 11:00. We did the registration and then met with the Dr. He was nice. I liked him well enough. He seemed very thourough. He ordered a chest X-Ray and bloodwork for that day. We were there until 5 p.m. Monday was a very long day. Tuesday we had lunch with some of our friends from Houston and then went up to the hospital around 7 p.m. for his catscan. We finished up around 11 p.m. Wednesday we got there at 12 for his petscan and finally finished up and left for home around 5. Traffic was terrible. We finally got home around 11 last night. We were quite tired!!!
The dr said that on Tuesday's they have their conference and the Dr's would all meet and review all of Donnie's information. His newest results, all the films and notes that we brought with us and then decide what course of treatment they might be able to offer so hopefully they will be able to call us Wednesday of next week. We get to play the waiting game again. I hate that game, I am not any good at it :(. He said that right now, surgery still isn't an option, maybe chemo , then chemo/ radiation and then we would see if it had shrunk enough to operate. The bad thing is the lymph nodes near his pancreas are almost impossible to get to with surgery. If chemo doesn't shrink them, he doesn't think they will be able to get to them. Something along those lines. I am very thankful that we have family to stay with in Houston. That makes things so much easier. It is definitely easier to be around family than in a hotel room somewhere. Feels more like home.
You know as Donnie was waiting for the doctor or having tests done, I would work the puzzles that are laid out on tables all over the hospital. I guess they put them out to help people pass the time, to help you keep your mind off of why you are there. Maybe it's just to feel like you are doing something. As Donnie got his last pet scan, it seemed to take forever. I walked thru the "park" as they call it and just looked around at all of the other people going thru the same thing that we are going thru. I can't describe the feeling. Knowing we aren't alone, that people out there know exactly how we feel and sad that all of these people were feeling exactly what we do. It brought me to tears as I thought "How did we get here? How did we get to this place where Donnie is fighting for his life? This isn't supposed to be happening to us. We are supposed to have the 'happily ever after'. " I wanted someone to wake me from this nightmare and tell me that everything would be ok. If only it were that simple.
It has been a long long week. I am glad it's almost the weekend but still have a ton of stuff to do so I don't think I will be getting much rest.
Anyway, still working hard on the benefit. They have been quite busy while I was gone. I can't believe it is next weekend. I hope we have a good turnout.
I will update when I know more.
love to all
Robin

In Houston

We had a very long day at MD Anderson yesterday, met the Dr had xrays and bloodwork. have an appointment for a catscan tomorrow night at 9. I know at night is crazy but we will do whatever and then wed at 2 he has a petscan . we will go home after that and then on Tues next week the drs will confer and call us wed with what they think our treatment should be. wish it was sooner but atleast feel like we are doing something now.

Mom, Lisa, Missy, Melissa and Brenda are working hard on the benefit, I don't know what I would do without them.

Got to go, love to all, Keep praying
Robin