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."

Thankful for One Year

Tom has been on XL-184 for one full year. I look back and can't believe how much has changed in the last year. People who have not seen Tom in a long time do not recognize him. They comment on his hair color change & loss of weight. He tells them he doesn't recommend his diet plan, what a sense of humor my husband has! At the start of this trial I don't think either one of us were prepared for all that would happen. The biggest challenge was for Tom to stop working. I tease him about being my Mr. Mom and he takes it well, but I'm sure if given the choice, he'd prefer to be the bread winner.

The last Tuesday in June Tom had his monthly visit in Detroit. His scans were done in May but they were done after his doctor visit. The scans came back stable and for a couple months we can breath a little easier. Tom's blistering has come back to his hands, feet, and top of his head. Dr. Ali said that as the weather gets warmer the toxins are exiting his body and it is typical that the heat pulls them out of these areas. Tom's potassium was low again & they are increasing his dosage to keep it leveled. Tom continues to struggle eating with the soars that are also in his mouth. I can't count how many times he has made a meal, taken a bite or two and then pushed his plate away. Getting him to eat more than Cheerios has been a challenge.

I am so glad that Tom was able to get on this drug. Even with all Tom's side effects and struggles I believe without it the cancer would have continued to spread and as the cancer was aggressive we would have had a much different year. Thank you to all our warriors that pray without ceasing. God has heard you & he is the Great Warrior & Great Physician.

Colossians 4:15 "Let peace of heart which comes from Christ be always present in your hearts and lives, for this is your responsibility and privileged as members of his body. Always be thankful."

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."

Busy week

This week was a busy one. On Monday Relay for Life in Barry County had it's kickoff. Tom was a guest speaker and I was at the front table greeting and selling tickets for the "Taste". It was a success!

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?"

Traveling Companion

Tom received a call a week before he left for Detroit. A longtime friend, Todd had decided to tag along with him. Sunday morning they headed out at 6:10 a.m. Tom had his MRI on Sunday morning. Monday, they headed back to West Bloomfield for a CT and Bone Density scans. Tuesday morning they went to downtown Detroit and met with the doctor for the results. Tom was told that the scans came back with good results. The scans did show that there was a spot in Tom's chest. The doctor said that he was not too concerned at this time. It could have shown up due to the way the drugs were pushed or the position Tom was in during the scan. He stated that he would like to watch for it on the next scans in June.

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!"