Tom has been diagnosed with Medullary Thyroid Cancer. We will continue to track Tom's progress through this site along with our thoughts/reactions. Feel free to share your thoughts with us in the comments section (by double clicking on the word Comment at the bottom of the posting & selecting Annonymous) as we journey through this together....
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Saturday, December 31, 2011
New Year's Decision
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."
Sunday, December 18, 2011
Christmas Wish
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!
Wednesday, November 16, 2011
More Information Please
Saturday, October 22, 2011
Not Alone
Sunday, September 25, 2011
Long stay in D-town
Tuesday, August 23, 2011
Relay & D-town in one weekend, whew!
Wednesday, July 27, 2011
Continued Treatment
Sunday, July 3, 2011
Thankful for One Year
Saturday, June 11, 2011
Keeping You Updated
I know that a lot of time has lapsed since my last post. What can I say? This has been a very hard winter/spring for me personally. With the loss of my brother I have been just functioning through life for sometime. Tom has patiently been by my side, dancing between letting me deal with my grief and trying to "be there" for me. What a wonderful husband I have, he is definitely my sounding board!
The kids are doing well. School is officially done on June 10 and they are all ready for the summer break. Kyle is signed up to go to Ferris State for computer classes, he is thinking about Ferris State as his college of choice when he graduates. Cody is in weight training, getting ready for Freshman Football. Both boys have drivers training classes, Kyle to take his test for his license, Cody starts the program & will have a year to drive us around. Katie is in Swimming Class currently. She has Volleyball & Basketball programs to help keep her busy this summer. Summer hazy lazy days.....we'll find a few!!!
Tom and I spent our 22nd Anniversary in Tom's hometown. It was so much fun to tour Grandville and see all that has changed from when he lived there. We went to a Restaurant we used to frequent every Thursday after the infamous softball games. We also went to a park that we used to walk a few times a week back in our dating days. Tom did not feel great, but we swam, walked & walked some more. It was a nice weekend of quality time.
Tom spent 4 days in Detroit for his rounds of tests/scans. He was able to meet up with his "Bro" Dan and they spent some time together. I call him "My other brother Dan" They were able to catch a Tigers game and went to Hard Rock Cafe'. I was glad once again that Tom did not have to go alone & could find some "fun" amongst his medical care. Tom's doctor appointment was after the Memorial Day holiday and Dan was able to experience the Chaotic office visit. Lets just say that Tom was there for many hours that day & he was a frustrated patient that was loosing patience! He then had his scans days after his doctor appointment. I guess we'll get the result when he goes back in June.
Tom has been approved for disability. His last date of employment will be June 28. In some respects, it was a hard decision for Tom not to go back to work. However, he struggled from September to December when he tried going back. Working 3rd shift is hard on a "healthy" person. Spectrum Health has been working with Tom and they are such a great company to lead us through the process. It has been difficult, but we both feel that we have made the right choice. I am so grateful to be working at the same place as this is making the transition easier.
I have made this long enough, I'll try posting more often. It's all about keeping everyone informed. Thank you prayer warriors for all the kind words and inspiration, I have needed them. I will leave you with these words:
Romans 8:26-28
"And in the same way - by our faith - the Holy Spirit helps us with our daily problems and in our praying. For we don't even know what we should pray for, nor how to pray as we should; but the Holy Spirit prays for us with such feeling that it cannot be expressed in words. And the Father who knows all hearts knows, of course, what the Spirit is saying as he pleads for us in harmony with God's own will. And we know that all that happens to us is working for our good if we love God and are fitting into his plans."
Sunday, March 20, 2011
Busy week
Cody finished his meets for Wrestling and on Saturday had a tournament. He finished the 3rd in his class out of 8 schools that participated. Not bad for his first year in wrestling...great job Cody!
Saturday evening we had our 2nd Annual Cancer Suck Euchre Tournament. We had 44 participants and the room was packed. It was a night of laughter and fun. We were so blessed to have people come out to support our cause. Our first place winner was from Jonesville MI. congrats Scott. We had comments already about who will come (and win) next year!
Sunday our church celebrated our 6 year birthday at Voice of Hope. People stood up and talked about their experience in the life of our church. It was great and encouraging to hear how God has walked with so many and how we in turn effect each other. I believe everyone who got up declared our church a "family". When Tom got up his testimony brought about some tears. Another member, who just last week lost her dad to cancer, got up to speak with her husband and there were not many dry eyes in the audience. Thanks family for being there for so many!
I received the news this past week that Tom's calcitonin levels have dropped to 981. It is hard to understand why these levels go up and down but we celebrate every time it drops! Thank you God!
1 Corinthians 4:20-21 "The Kingdom of God is not just talking; it is living by God's power. Which do you choose? Shall I come with punishment and scolding, or shall I come with quiet love and gentleness?"
Wednesday, March 9, 2011
Traveling Companion
The guys had a good time hanging out together. I am so grateful that Todd was able to go with him. A big thank you for the rest of his family also that had to give up their dad & husband so Tom would not have to go alone.
The next time Tom will be heading down to Detroit is April 5. This will be during Spring Break for the kids. We will have to decide if this will be a family trip.
Psalms 43:5 "Trust in God! I shall again praise him for his wondrous help; he will make me smile again, for he is my God!"
Sunday, February 13, 2011
A hard week
On Tuesday Tom & I got up at 4:00 a.m and were on the road by 5:00 so that Tom could get through his clinical trial. He needed to do this to continue with his medicine as you can't get his drugs through any pharmacy. The people at Henry Ford Hospital were trying to accommodate our request to get through quickly & be back on the road ASAP. They rushed us through and did a pretty good job, except that he was poked 4 times instead of just the once. His arms are still black & blue almost a week later. Tom will be heading back to Detroit before March 8 for all his scans once again.
It amazes me how strong my husband is. He was continually by my side and assisted with anything the family needed done. On Tuesday on our drive we talked, laughed and cried during our trip to Detroit. I wrote down some of my fondest memories and would share them with Tom. I think it was good for us to go through this process together as part of our grieving. I also wrote a poem in Dan's memory. Tom wanted to share these with the family & friends. I knew that as much as I wanted, I could not stand up and put to words what I had put on paper. On Thursday night he decided to speak at the funeral. He did such a great job! I am not sure how he got through it but it made us laugh through our tears. I am so proud of the man that I married. I could not imagine going through this without him.
Instead of the verse that I usually write, I would like to share the poem that I wrote in memory of Dan Van Dyke December 6, 1966 - February 4, 2011:
To My Big Brother
As we grew I looked up to you
My brother and my friend
It's so hard to say goodbye
This can not be the end
As memories fill my mind
The years that have flown by
You lived your life to the fullest
As you jetted through the sky
In life you brought laughter
Your smile filled the air
You will be so dearly missed
I'll never forget our time we shared
God called you home & I'm sure the Angels did sing
As you were given your forever wings
-Valerie Andrews
Thursday, January 13, 2011
A Long Days Drive
Tom is back on the Chemo drug. The labs show that his potassium, magnesium, and calcium levels are still low. They have put him on yet more drugs to bring these levels up. Tom talked with his primary doctor and asked to be put back on the drug Maxide (that they had also taken him off ) as the side of surgery returned quickly after he stopped using this drug. Tom has struggled for the past couple mornings as his face blew up like a balloon so bad that he could barely see when he gets up. I've noticed he is struggling with his breathing also as he sleeps. We still do not have the results of his Calcitonin level.
Tom is adjusting very well to his role of Mr. Mom. I must say I enjoy coming home to dinner on the table and relaxing as he cleans the kitchen. The dogs are having a hard time getting used to Tom being home at night. They've lost their spots on the bed. This past week the Sleep Lab threw Tom a little luncheon. He truly works with a group of caring and generous people. Tom was blown away when the physician he has worked for the past several years got up and thanked Tom & complimented him on his quality patient care.
Luke 12:25-26 "And besides, what's the use of worrying? What good does it do? Will it add a single day to your life? Of course not! And if worry can't even do such little thing as that, what's the use of worrying over bigger things?"
Monday, January 10, 2011
Exelixis’ XL184 Granted Orphan Drug Designation and Assigned the Generic Name Cabozantinib
Tuesday, January 4, 2011
New Year's Set Back
In the past few days Tom has noticed some new or different side effects which required him to call his doctor in Detroit. His doctor has removed him from the experimental drug and ordered him to Spectrum Health asap for blood workup. Tom is experiencing numbness and tingling in his arms, legs, and face. He has also had some temporary paralysis in his hand. This appears to be some type of metabolic problem, possibly related to low calcium or blood sugar levels. We will not know for sure until we get results from the tests. Hopefully it is as simple as a new prescription to get Tom back on track and the doctor will allow him to return to the study. To add insult to injury Tom has been battling sore throat & ear aches again. He seems to be more susceptible to these type of viruses. On Tuesday, January 11 Tom heads back to Detroit to discuss the next steps with Dr. Ali. Long range forecast is predicting another storm to hit on that date. Gotta love that drive.
In this new year many people make resolutions that are hard to follow through. I have decided that this year I am just going to enjoy the people & relationships around me and not take a day for granted as we never know what tomorrow will bring. I have looked back over this past year and seen many trials, challenges, and hope. Though I have started getting up early again (since mid December) to workout. I have other focuses that are far more important. I have been reminded to simply Live, Laugh, Love.
1 Timothy 4:8 "Bodily exercise is all right, but spiritual exercise is much more important and is a tonic for all you do."