Reflecting back on this year has been bittersweet. I am so glad that Tom is here to walk with us in 2011. I don't know how I would have made it through the loss of my brother without him by my side. We have taken the opportunity this year to see people that we have lost touch with. Tom has had many people bring him to Detroit and spend time with him. He has enjoyed the time with his family/friends. As always, the generosity of people has continued to amaze us.
Towards the end of this year, the effects of Tom's chemo was noticed by many. It's hard to describe to people how Tom feels. I usually tell people it's like having the flu but knowing that you will not feel better in a couple of days....This is his life.
The kids are all handling this well. I just found out today that when our eldest gets home he always checks on how his dad is doing when he walks through the door. He said he even "tucks him in" if dad is having a bad day. That's my Kyle! Cody makes sure dad is feeling well and is able to come to his events & Katie loves to give her daddy hugs. This year at Thanksgiving we had to write about the things we are thankful for. I wrote that we have a lot of stress in our family & I'm grateful for the times we sit around the dinner table talking & laughing about silly things. I will just say we have the weirdest table conversations & funny memories!
On Tom's last visit to Detroit the doctor decided to remove him from treatment for one cycle. Tom had requested this as his side effects have become worse and he needed a break. I think the fact that the holidays were coming up and Tom wanted to enjoy sometime with his family without being sick might also have had something to do with it. After just 3 days, you could see the difference in him. I had my husband back even if it is for just 28 days.
Tom talks with other MTC patients on a chat site. We have found out that 3 people currently on the trial are experiencing growth in their cancer again and have been removed from the Clinical Trial. Tom also found out that the MTC drug that was approved earlier this year is available and that his U of M oncologist is able to administer it. Tom wondered this spring if he should switch to the FDA approved drug. In this last month he started to look into it again. He has an appointment with Dr. Worden @ the U of M to discuss this mid January. Tom would like Dr. Worden's opinion about the direction Tom should go with his treatment. If he does decide to go with the drug Vandetanib Tom could receive all his treatment here in Grand Rapids under Dr. Worden's direction. While we are so grateful for this drug keeping Tom alive, being in a clinical study on the other side of the state has worn on us both physically, emotionally, and financially.
We both understand that this can't be a flippant decision. It is a huge choice and needs to be researched, talked about, and prayed about. I understand that if Tom chooses to come out of the trial he will not be able to get back in if the other drug does not work.
1 Timothy:1 "Here are my directions: Pray much for others; plead for God's mercy upon them; give thanks for all he is going to do for them."
Saturday, December 31, 2011
Sunday, December 18, 2011
Christmas Wish
I know for many it's a busy time of the year. For our family it starts with the Thanksgiving celebration and goes until the New Year. This year after the family Turkey time we headed to our friends house in Ohio. There were 36 people family/friends who gathered to watch University of Michigan play The Ohio State. After traveling there for almost 7 years to watch U of M lose, it was a sweet victory to watch them win. As always we all had a fun time and ribbed each other all weekend. Tom however was not feeling well the entire trip and many concerned friends saw what his daily life was like. Tom was very quite and not himself this trip. I saw on their faces they got a little taste of helplessly watching him struggle. He tried to keep up a good front, but he was not able to for 3 our day visit.
Tom had a good doctor visit and talked with the Dr. about being off the drug this Christmas. His Potassium and Magnesium levels had dropped again, but the swelling was better as well as his breathing once he switched back to water pill. Tom also talked about his rib pain. Once he's back on in January and if it appears again, Tom will need an x-ray. Dr. Ali did say this is becoming a common side effect of this drug.
He is also enjoying watching Cody wrestle. Cody made the Varsity squad and has kept us busy with his schedule. I wonder if Cody is actually enjoying wrestling more than football. We are checking out other High Schools spirit shops and such. Tom is getting some ideas to bring to the Booster's committee he is on. I was thinking that Cody would be on the JV team and we would have a easy year with wrestling, but I am getting a better understanding of the sport and am so proud of how well he's doing for his second year. After his first invite last Saturday as we were coming home I said. "Cody, all these years of your dad watching football he couldn't get me involved. Since you play I can't get enough of watching it. Now your into wrestling and I find I'm enjoying it too. What next?" He's still thinking on that one!
Tom has been off the drug for a little over a week. His appetite is coming back and I hope his energy level will also. He has been doing so much around the house getting ready for Christmas. I have been busy with working and school. I have my exam tomorrow and am contemplating going back or not. I'll know when the time is right to go back. Right now I feel that I'm overloading myself trying not to miss anything. I don't want to miss a thing!
We learned this month that another MTC patient who has been on the trial longer than Tom has been taken off because the drug is no longer working. It breaks my heart to hear such sobering news this Christmas season. I feel it's another reality slap in the face of how serious this disease is. It makes me realize once again that we have been so luck to have Tom here today.
My Christmas wish this year is that Tom will continue to feel good once he is back on the drug. I hope that we don't take each other for granted both inside and outside our family. My goal is to let those I see this Holiday Season know how much they mean to me. Have a safe and Happy Holidays!
Tom had a good doctor visit and talked with the Dr. about being off the drug this Christmas. His Potassium and Magnesium levels had dropped again, but the swelling was better as well as his breathing once he switched back to water pill. Tom also talked about his rib pain. Once he's back on in January and if it appears again, Tom will need an x-ray. Dr. Ali did say this is becoming a common side effect of this drug.
He is also enjoying watching Cody wrestle. Cody made the Varsity squad and has kept us busy with his schedule. I wonder if Cody is actually enjoying wrestling more than football. We are checking out other High Schools spirit shops and such. Tom is getting some ideas to bring to the Booster's committee he is on. I was thinking that Cody would be on the JV team and we would have a easy year with wrestling, but I am getting a better understanding of the sport and am so proud of how well he's doing for his second year. After his first invite last Saturday as we were coming home I said. "Cody, all these years of your dad watching football he couldn't get me involved. Since you play I can't get enough of watching it. Now your into wrestling and I find I'm enjoying it too. What next?" He's still thinking on that one!
Tom has been off the drug for a little over a week. His appetite is coming back and I hope his energy level will also. He has been doing so much around the house getting ready for Christmas. I have been busy with working and school. I have my exam tomorrow and am contemplating going back or not. I'll know when the time is right to go back. Right now I feel that I'm overloading myself trying not to miss anything. I don't want to miss a thing!
We learned this month that another MTC patient who has been on the trial longer than Tom has been taken off because the drug is no longer working. It breaks my heart to hear such sobering news this Christmas season. I feel it's another reality slap in the face of how serious this disease is. It makes me realize once again that we have been so luck to have Tom here today.
My Christmas wish this year is that Tom will continue to feel good once he is back on the drug. I hope that we don't take each other for granted both inside and outside our family. My goal is to let those I see this Holiday Season know how much they mean to me. Have a safe and Happy Holidays!
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