New Year's Decision

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."

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!

More Information Please

The fall is Tom's favorite time of year. He loves football, crisp nights, wearing sweaters, and did I mention football? Cody's team did not fare so well this year. I believe he enjoyed the year none the less and is now getting ready for Wrestling. Katie's basketball team has only 1 loss. She is loving it. So far she has made a basket, while the family whooped it up! She is definitely a scrapper :)

I talked to my instructor and asked work for two days off to accompany Tom to Detroit. It was all approved and I recruited Grandma to watch the children and the "girls" (our dogs). She loves to come spend time with her grandchildren, but Cody ended up with dog duty at night as Grandma shut the bedroom door and the girls had to find elsewhere to sleep.

Tom was previously fighting the cold/flu bug and did not feel well the week before we went. However, he was in good spirits on Sunday morning when we pulled out of the drive at 8:00 am. After two days of scans he was not feeling that great, but he was not letting on how bad he really felt. He had such a good attitude our entire trip and kept saying how glad he was that I could go with him. It makes me sad that I can't go every time and that makes these trips bittersweet.

On Tuesday we met with Dr. Ali for the results. He said that the scan were stable and that things were looking good. I had noticed that his CEA jumped from 17 to 53 from his last scans in August. I decided to finally ask the question I've been asking the other doc's for 4 years. "Why did the CEA fluctuate so?" He took a great deal of time explaining how the numbers and scan indicate what the cancer is doing. He also talked about what they watch and when they use tumor markers to closely follow the cancer. Tom's last 2 blood work results showed a slight increase in both CEA and Calcitonin. At this time Dr. Ali is not too concerned because the scans continue to show as stable. He should have these results back from the Mayo Clinic in 2 weeks. If there is once again an increase in the tumor markers, then they may start monitoring these levels monthly. Dr. Ali. did comment about one of the tumors in Tom's liver. It had changed in appearance. He felt that this is due to the cells dying from loss of the blood source. There is always a chance that the opposite is true and it once again is growing and has outgrown it's blood source. We will see what it looks like in 3 months after Tom's scans in February.

After 3 days of being on the road we were ready to head for home. It was a beautiful day and Tom kept saying that "He should be hunting". I know that he misses many of the things he used to do. Its hard to realize that life has so drastically changed. Now we are concerned with numbers, scans, and day to day "feeling wonderful" when just 4 years ago we had more material worries. I know that God is using our family for his purposes. I know that he is beside us in everything that happens, are we reaching out to him? I am reminded that God is not the booming voice, but in the whispers.

1King 19:11 "Go out and stand before me on the mountain," the Lord told him. And as Elijah stood there the Lord passed by, and was a mighty windstorm hit the mountain; it was such a terrible blast that the rocks were torn loose, but the Lord was not in the wind. After the wind, there was an earthquake, but the Lord was not in the earthquake. And after the earthquake there was a fire, but the Lord was not in the fire. And after the fire, there was the sound of a gentle whisper.

Not Alone

Cody is done with football for the year. His team went 1-7 but he had some great plays & enjoyed the game. He was told by the Varsity Coach to head to his room on Monday...for Wrestling. Katie has started the basketball season and so far her team is 1-1. I love this time of the year. It's busy! I am glad that they take after their father, and play sports.

Tom went to Detroit on Tuesday with his sister, Cathy. They were on the road at 5:00 am. They had a good visit and Tom was told that his blood work showed his potassium and magnesium are at good levels as a result of the change in the drugs he takes. However, they have removed him from one of the drugs that controlled the swelling and fluids in this neck. This makes his mornings very difficult. Tom's next visit will include his scans once again. I am not able to go with him as I am in school on Monday evenings & with Katie having basketball on Saturday's getting his scans done over the weekend does not fit. So, I am sad that he has to go alone.

We received a letter today that Tom's PCP is closing his practice. Tom has relied heavily on Dr. D for so many years. There are not many doctors that have the quality of care that he has provided. I am sure that Tom will be placed in good hands, but it will take a bit to get comfortable knowing that there is a different doctor at the helm. I work at the same hospital as Dr. D, it made me laugh that every time he e-mails me I have my out-of-office on & he's teased me about it. Tom went to see him last Friday and get the flu shot & go over his labs, Dr. D asked Tom, "Does your wife work?" We will both miss him. I am glad that he will still be at the hospital and I can contact him.

During this fall season I am reminded again of how lucky I am that my husband is such a fighter. He has a great outlook on life & he is determined to watch all his children graduate. Life is so fragile and hearing in this past year of all the families who've lost their father, husband, & provider helps me to remember not take mine for granted.

I believe this verse sums up what I am trying to say "Don't be weary in prayer; keep at it; watch for God's answers and remember to be thankful when they come" Colossians 4:2

Long stay in D-town

Tom went in for what we thought was his routine monthly visit in Detroit. His lab work came back and showed that his Potassium levels were dangerously low. They started him on oral Potassium and an IV. They gave him the IV Potassium at too great of a concentration, causing Tom to be very sick & in extreme amount of pain. He ended up staying over night in Detroit as they wanted him back @ 8:00 am for more blood work. Finally was able to come home around noon on Wednesday. Doctors put him on a higher dose of liquid Potassium, which Tom is struggling to take. He plans to contact the Henry Ford on Monday as he is experiencing more problems with circulation, paralysis of his extremities, & vertigo.

This was the first month that Tom resumed his volunteer work at Wayland EMS. I know that this is his passion, but I think that he is coming to the realization that he can no longer continue to work on the ambulance.

It has been hard to watch Tom struggle with the daily tasks. I see him getting tired easily, though he will not always admit it. There are days that he has an appetite and enjoys a meal, but most days he seems to prefer a little bowl of cereal. I was happy to hear that this month he maintained his weight and if he mentions something that sounds good, that is what we have for dinner!

It is always harder to share the rough days. I always try to keep things on a positive note, but some days the severity of this disease just seems to slap us in the face. I was saddened to read this past month that 2 other patients with MTC passed away. It helps me to remember how precious each day is. I have a book I've mention before "Stream in the Desert" that a dear friend gave to me over 4 years ago. Though I do not read it everyday I still finds it quiets my soul. As I love poems and my heart tends towards them, I would like to share this one with you.

He was better to me than all my hopes;

He was better than all my fears;

He made a bridge of my broken works,

And a rainbow of my tears.

The stormy waves that marked my ocean path,

Did carry my Lord on their crest;

When I dwell on the days of my wilderness march

I can lean on His love the for rest.

He emptied my hands of my treasured store,

And His covenant love revealed,

There was not a wound in my aching heart,

The balm of His breath has not healed.

Oh, tender and true was His discipline sore,

In wisdom, that taught and tried,

Till the soul that He sought was trusting in Him,

And nothing on earth beside.

He guided my paths that I could not see,

By ways that I have not known;

The crooked was straight, and the rough was plain

As I followed the Lord alone.

I praise Him still for the pleasant palms,

And the desert streams by the way,

For the flowing pillar of flame by night,

And the sheltering cloud by day.

Never a time on the dreariest day,

But some promise of love endears;

I read from the past, that my future will be

Far better than all my fears.

Like the golden jar, of the wilderness bread,

Stored up with the blossoming rod,

All safe in the ark, with the law of the Lord,

Is the covenant care of my God.

Relay & D-town in one weekend, whew!

It has been a busy extended weekend for my family. August 19 started with participating in the Relay for Life of Barry County. Many of our team members walked 15 + miles and we had several 8 and 24 hour endurance walkers. Tom had said that he was going to take it easy at Relay this year and concentrate on the team. To no one's surprise he signed up as an 8 hour endurance walker & made it. I had mixed feeling about Relay as I was the Accounting Chair. I know it was an important job but I did miss a lot of time with the team this year as I had my Committee duties. Tom keeps pointing out that this is an important position and that Relay could not run without volunteers being involved. I selfishly wanted to spend the 24 hours walking with my husband. However, Katie stayed the 24 hours and walked many laps in my place. She was his inspiration! It was a sight to see @ 3:00 am, her walking with her arm around her dad, holding him up.

No rest for the weary though, when we came home we cleaned the camper that Tom's dad so graciously let us borrow for the event and repacked for Detroit. Sunday morning the whole family was out the door by 8:30 heading for West Bloomfield and Tom's first scan. The kids had not accompanied us before for any of Tom's scans. Tom was able to handle the heat on Sunday & we enjoyed a exciting Tigers vs Indians game. On Monday Tom had two more scans and that completed his day as he always gets sick after the CT scan. Back at the Guest Housing in Detroit we kicked back and hung out watching movies while Tom fought the nausea.

Tuesday the scan results came in. Tom 's scan came back stable & he is allowed to continue his treatments. Dr. Ali and I seem a little concerned that he lost another 9 pounds, but Tom is liking this part of his diet plan. Tom's level is still low for potassium and magnesium but at this time they did not make any changes. The RN did suggest that Tom take potassium in the liquid form as he is having a hard time taking the "horse pills".

We left Detroit as soon as we could so that we could get Cody to his football practice. Tom is very excited to see his sons first high school football game. It is the things that others take for granted that touches Tom like never before. Living life today has a new meaning as Tom celebrated his 4 th birthday & second Relay event.

Knowing that we have such great support and prayer warriors helps us to keep up the fight. We still take so much in life for granted and keep living daily with joys and complaints like so many. I just want to take a moment & thank you again for your words of encouragement that helps us to remember that HE is in control.

Proverbs 20:24 "Since the Lord is directing our steps, why try to understand everything that happens along the way?"

Continued Treatment

The kids are enjoying more hazy, lazy days of summer. Kyle has passed his driving test & we have a licensed driver, yahoo! As the years stretch on it seems that time is going faster & faster.

We are getting closer to our Relay for Life event in Barry County and we have a Golfing Event before that happens. Tom has been busy with the planning for this good cause. I think that he is looking forward to wrapping up this years events & focusing on feeling well for a while.

Tom got the results that his Calcitonin was up a little to 1016. It's not an alarming jump, but I would like it to be on the downward trend. Tuesday we headed to Detroit for the day. We were on the road by 7:30 am and did not return until 7:00 pm. I have to say that we had a good day together and even though it was a long trip, and we were worn down by the time we came through our door, we seemed to be in good spirits. Dr. Ali did not have anything new to report other than Tom's Potassium and Magnesium continue to be low. They are increasing his potassium and putting him on Magnesium. The doctor also gave Tom a prescription for "Magic Mouthwash" to help with his mouth sores. The next trip to D-town is for Tom's scans next month. This will be a 3 day trip and we will be taking the kids for the first time.

Tom's meddie friend has written information about MTC to help her friends and family understand what we are going trough. Kyle has put it into a link to share with everyone. It is titled MTC Information under the MTC Diagnosis & Treatment in the link section at the top right side of page. After clicking over to the link, select download and be patient it will come up. I know some of you still do not understand this rare form of cancer and hopefully this will help. When Tom read it he said to me "This is my life".

I will leave you with another of my favorite scriptures, Psalms 61:2

"For wherever I am, though far away at the ends of the earth, I will cry to you for help. When my heart is faint and over whelmed, lead me to the mighty, towering Rock of Safety."