Matthew - June 8, 2010

Our precious and much loved Matthew passed away and went to be with the Lord on Wednesday, June 8, 2010 at 1:45 a.m. after a courageous, 3 1/2 year struggle with cancer. His dad/Greg, mom/Nancy, brother/Ian, and fiance/Tiffani were present.

Services are on Saturday, June 12 at First Baptist Church, Clinton, TN

Receiving of friends 1-3 p.m.

Funeral 3 p.m.

Burial to follow

I can't believe it's been since mid-May that I have updated the blog. Many of you have gotten the updates via other means so this will be a repeat of what you already know. Others of you could use a few details of the past few weeks.

In the middle of May, Matthew had not recovered enough from the chemo he took in April to continue with the treatment scheduled for May 17. He received a blood transfusion on the 19th to improve his hemoglobin. Beginning the 2nd week of May, Matthew had begun retaining fluid and by Friday the 21st the swelling was so uncomfortable, an ER trip was warranted. Because of the excessive swelling in his feet, he developed cellulitis on his left foot as well as a bad rash on both feet due to the irritation of the surface tissue. Matthew was admitted on the 21st, had a paracentisis that removed 9 liters of fluid and was put on IV antibiotics for the cellulitis. He stayed in the hospital until Monday the 24th during which time he also had trouble eating.

After coming home, Matthew began to feel a little better, continuing the strong antibiotics but not being able to eat much because of sickness. Unfortunately by Friday the swelling in his feet returned and on Saturday he had blisters on his hands and feet as well as swelling in both hands. He was unable to walk without assistance and had to use the wheelchair. Due to these changes, we returned to the ER on Saturday afternoon, May 29th.

During this hospital stay, MANY blood tests were run to determine the problem with the rash/blisters/swelling of hands and feet. Nothing is definitive yet but Vasculitis was considered the most probable option. Since steroids are given for someone with Vasculitis and that was not a good option for Matthew, nothing was done. Since more fluid had accumulated, another paracentisis was done on Monday, the 31st removing 6 3/4 liters, making it necessary to stay in the hospital until Tuesday, the 1st of June.

I am happy to say that the swelling is gone in his hands but some sores remain. The swelling in his feet has improved and the blisters/rash is improving slowly each day. They still have a long way to go. We are thankful that he is now able to walk without pain. Matthew is still having a lot of nausea and sickness issues so he is still eating a liquid and soft food diet. Our son and Matthew's brother, Ian, came in on the weekend and has been a tremendous help this week fixing nutritious juices and smoothies for Matthew to help him regain his strength. Ian's energy has been a help to ALL of us.

In the midst of his fatigue, feeling weak and sick and waiting on his feet to heal, Matthew's sense of humor stays in tact. Suddenly in the middle of a conversation his quiet voice will come out with a pun or statement in his own special, dry humor and his Dad, brother, fiance and I will all burst out laughing. I've always told him he needs to become a comedian!

Thank you for all the acts of love, support, and thoughtfulness we are receiving daily. Even after 4 years of receiving these blessings, the support remains strong and your commitment to us never wavers. God has used you all in so many special ways to provide what we need and at just the right time. I pray for God's blessings on your lives and that one day we will be able to reach out to you in your need.

Our prayer requests are: strength & energy for Matthew; less pain; healing of his feet; his ability to eat without so much sickness; the removal of fluid without infection; energy and wisdom for those of us who take care of his needs - doctors, nurses, family and friends.

Thank you.

Sincerely,

Nancy

Sometimes it's like a roller coaster ride...

Just wanted to update you on Matthew and ask for your prayers as we face new hurdles.

Matthew ended his last chemo treatment on April 27. Unfortunately it was a very rough treatment and left Matthew feeling extremely tired and sick with very poor blood counts. We were in hopes that over 2 to 3 weeks break he would recover and be ready for the next treatment to begin on 5/17. Unfortunately that has not been the case. So this weeks chemo was cancelled. In addition to low counts, Matthew has developed swelling due to some liver issues.

Please pray for Matthew especially tomorrow (Wednesday, 5/19). He will have a blood transfusion to hopefully remedy some of the blood count problems. We are in hopes that this will make him feel a lot better.

Back in April, our doctor from MD Anderson told us about a clinical trial at Sloan Kettering in New York (where we went in 2008) that is a specific treatment for people with DSRCT - the rare cancer that Matthew has and that we should consider it at some point in the future. Last Friday, Dr. Anderson recommended that we pursue this now because he felt this is the best option for Matthew at this point. We began making calls today to look into this possibility.

So, you can see the situation has changed quite a bit since the last email. We ask for your continued prayers for strength, direction, and peace about the decisions that are being made. Please pray for Matthew's pain and discomfort, the swelling, and for energy to meet the challenges of each new day.

In the midst of the hard times, we are blessed with laughter and fun times together and we are thankful for that.

Also, we are thankful for your prayers for us and the encouraging cards, texts, and emails you send our way. They help so much.

Nancy

Matthew began chemo today

Just a quick word to let you know that Matthew was able to begin his chemo today. He will be hooked up for 2 wks followed by a 2 wk break. His counts were borderline so he also received a shot for his red count today as well. Thursday he will return to receive his additional chemo (Avastin) that he takes once every 2 wks.

Thanks for the love and prayers,
Nancy

Blood counts are improving

Just a quick note to let you know that Matthew's white cell count was better on Thursday but only slightly. This is good news in that the "trend" for all of the counts is on the upswing. This means they have "bottomed out" since the first week of chemo in Houston and are now recovering. Unfortunately they were still way too low for him to begin chemo again. He did receive 2 shots (one Thurs and one Fri) of Neupagen that helps encourage manufacturing of the white cells. Hopefully with the shots and the trend of the numbers already moving upward, Matthew will be in good shape to begin chemo on Monday the 19th. Our appt. is at 1:00 p.m. that day.

Many of you have sent supportive messages this week reminding us that God continues to be in control and things happen for a reason. In the midst of these setbacks, Matthew is feeling much better, eating better and has gained weight. Praise the Lord for that!

I'll send a quick note after Monday's doctor's visit to let you know the latest.

Have a wonderful weekend!

Love,

Nancy

Chemo postponed again

We went to the doctor yesterday for Matthew to begin chemo again. Unfortunately, even though his urinalysis was ok, his blood counts were extremely low and the doctor would not allow him to begin chemo again. He wanted us to wait until next Monday but Matthew persuaded them to check him again Thursday to see if his counts had recovered enough to begin then.

The original intent of this plan of chemo treatment was for Matthew to be "hooked-up" to the chemo 24/7 for two weeks. (They only temporarily unhooked him last week so he could fly home.) Now, instead of an overnight break, it has turned into 4 days and ultimately could be over a week's break. After contacting our doctor in Houston yesterday, he told us that when Matthew gets to start again he will then need to continue 2 weeks from that point. Even though he had already had a week's worth of the 24/7 chemo in Houston, it didn't count since the weeks had to be consecutive.

So... we are praying for patience, wisdom and strength to face these setbacks. We are also praying that Matthew will continue to feel well enough to eat to maintain his strength and weight. We are also praying that his counts have already bottomed out and will begin to recover soon.

Love,
Nancy

We are home from Houston

Just wanted to make you aware that Matthew's Houston doctor allowed him to come on home to finish his current round of treatment at our Knoxville Oncologist's office. The details were taken care of over a matter of 2 days and we were on our way. Matthew was unhooked from his chemo yesterday morning (Thurs) and we flew home last night. This morning we went to Knoxville for him to "re-hooked". Unfortunately his urinalysis wasn't acceptable so they gave him a large bag of IV fluids and rescheduled his chemo hook-up for Monday. They'll retest him at that time to make sure he is in shape to take the chemo. If so, he will take the 2nd bag of chemo over a 7 day period ending the following Monday. At that point, he will have a 2 week break. When the break is over he will again be connected to 24/7 chemo that will last for 2 wks followed by another break. On June 1st, we will return to Houston for repeat scans.

It is WONDERFUL to be home! I believe that just the positive effects of being home will be a boost all the way around! Thanks to Greg, our yard and flower beds look amazing. Spring has definitely hit East Tennessee.

God blesses us daily through your prayers, phone calls, texts, supportive emails, blog entries and Facebook comments. They definitely lift us up and help us keep moving forward. Since we are home, I look forward to some local hugs as well!

Nancy

Back in Houston 4/1/10

Matthew and I returned to Houston this past Sunday evening (3/28). On Monday and Tuesday (3/29 & 30) Matthew had a Petscan, CT scan, chest xray and blood work. On Wednesday we met with his Oncologist and Radiologist.

The news we received was mixed. First of all, the radiation & chemo therapy specifically on the liver that Matthew received in January & February was very successful. The difference in the visuals of the liver was remarkable. This is very good news.

Unfortunately in the next breath the doctor used the word "but" which is when we were told that while the "good things" were happening in the liver area, the cancer outside the liver had become aggressive. So, what has to be done is to get it back "in control". The plan of attack is that Matthew will begin a regimen of chemo that will be infused 24/7 over a 14 period. (For those that are interested, the drug is Ifosfomide with Mesna.) He will also take Avastin every 2 wks.

Dr. Anderson, (Matthew's oncologist) said, "I guess you are wondering why I didn't suggest this before. Well, I didn't know about it's new use for those in your situation until 3 wks ago." So, we feel like we are getting the most current treatment possibility at this point.

Matthew & I will remain in Houston for at least 2 wks. His doctor may let us go home at some point allowing Matthew to receive treatment in Knoxville.

I will certainly keep you posted as we settle into this new treatment schedule. We would appreciate your prayers that this will be very effective for Matthew. Thank you.

I hope and pray each of you have a blessed Easter, a time to remember the triumph that our Lord and Savior, Jesus Christ had over death and the sacrifice He made to give eternal life to each of us. Hallelujah! He is risen!

Love,

Nancy

A brief "visit" at home

Matthew and I returned from Houston on February 20th. He has been hit pretty hard with his new chemo (peg interferon) but has improved this past week. The doctor had told him that he would probably develop a "tolerance" to the chemo and feel better as he continued the drug. Fortunately, that has happened. He still sleeps quite a bit to fight the fatigue from the radiation treatments he had in Jan & Feb.

I arrived home sick with an upper respiratory virus & ear infection. Been on 2 antibiotics and can't seem to kick it. I return to the doctor this week for some additional advice. Gotta get better because....

We return to Houston on March 28 - Palm Sunday. Matthew will have scans and tests on the 29th & 30th. We will see the doctors on the 31st for the test results and to determine what the next step will be. I'll send you information as soon as we have it.

Thank you so much for your continued prayers. That's what helps us meet the challenges of each day.

Nancy

Feb 7, 2010 Update for Matthew

Just wanted to send an update on how things are going here in Houston. When I wrote last, Matthew was about to begin chemo and radiation at the end of that week. It took awhile to get everything in control but, thank the Lord, things are running much smoother at this point.

At first, Matthew had an adverse reaction to the chemo drug. He had taken it before and told them that he needed "heavy duty" nausea meds for it but the doctor chose to go another route which didn't work. Matthew was very sick for 5 days and lost weight because he couldn't eat. Finally, they put him on the IV meds he had had in Knoxville. Within a day he was MUCH better and after a week had gained back a few pounds that he had lost. The extra meds are given to help with the chemo drug but they also help with radiation treatments and side effects.

Each weekday Matthew has a similar schedule of pre-meds, chemo, radiation, & blood-work. He sees both doctors on Mondays. He has the weekends off of the chemo and RT. One of the meds makes him sleepy and he gets the extra rest he needs. As he continues this week and next we would expect him to become more tired from the radiation as well as sick but we'll just wait and see. No need to borrow trouble!

We were given alot of harsh words of warning about the radiation since it his liver and the treatment is what the doctor called "outside the box". We were very concerned. I am glad to say we are extremely thankful to the Lord that the many warnings of what we could expect have not happened. It's still tough, but not like it could have been to this point.

Matthew will finish his last radiation treatment on Thursday, Feb. 18th. He will receive another new, heavy duty chemo drug on that Wednesday which he is supposed to continue when he gets home. Greg will come in on the 18th and we plan to leave to come home on Saturday, the 20th. Whew, it will be good to be going home for awhile!!

We have received thoughtful cards, drawings from our sweet, great-nieces, a visit from another niece, phone calls, emails, and several gifts that have helped to make our stay easier. All I can say is: WE ARE SO BLESSED!! Thank you, thank you! Thank you, too, for the prayers that give us strength daily.

I have been reading a new book by Ruth Graham (Billy Graham's daughter) called, "Fear Not Tomorrow, God is Already There". When commenting on God's presence in our lives, Ruth uses the scripture Exodus 33:14 which says, "My presence shall go with you, and I will give you rest." What an amazing promise! And He fulfills ALL of His promises because we know God is present and by helping us carry our "load" is giving us needed rest from stress, heartache, & weariness. Praise God for His faithfulness to us.

Love,

Nancy

New plan update

It's Monday, MLK day and many of you are probably home from work and/or school. Hope you have a great day off! Relax and enjoy.

It's quiet here in Houston this morning. The sun is shining bright and the temp is supposed to go to 65 degrees today - 70's for the next 2 days! Yikes!

I took Greg to the airport this morning and he'll be arriving home after lunch. Ian left yesterday to return to DC. Tiffani will be with us for another week.

Tomorrow, Matthew will begin his new chemo that was specifically chosen to enhance the radiation treatment.

This past Friday, Matthew had a "simulation" to give the radiologist the information to formulate the plan for the radiation. She (Dr. Fran McAleer) will be working on that plan this week. Depending on how long it takes her to sufficiently prepare, Matthew will begin the treatments by this Thurs or Friday, or at the very latest, Monday of next week.

Instead of the 2 weeks that we were told originally, it will be 4 weeks of radiation treatment (weekdays only). Each treatment will most likely take about an hour - beginning to end. That along with the chemo treatments will put us at the hospital a minimal amount of time which is good. Matthew will have plenty of time to rest. Two of the most prevalent side effects are fatigue and nausea which increases over time as he takes more and more of the radiation. Fortunately, one of the chemo drugs has very few side effects but the other does. Matthew has taken both of these before. The doc has given Matthew meds to help at least tolerate some of these.

Since last Wednesday when the surgery was cancelled and the plan completely changed, we have been adjusting. I must admit, I haven't been able to answer emails very promptly - I just didn't have it in me. But many of you have sent emails & Facebook comments of encouragement and reminders that God's timing & plan is perfect and we must trust that. Thank you. We have needed to hear that in the midst of our disappointment. A good friend reminded me of the "Footprints" story where there was only one set of footprints on life's journey and that was when Jesus carried the person - we are definitely being carried in the arms of our Lord at this point. Thank you for being His angels as you help "carry us" with your prayers, love, cards, calls, and emails. We are SO blessed to have you in our lives.

When I have more information on the radiation schedule, I will let you know.

May God bless you wherever you may be today.

Love,

Nancy

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Surgery is cancelled for Jan 14

Wednesday morning Matthew's doctors decided to cancel his surgery due to the results of the scans/CT's/tests of the past 2 days. (It is not off the table - only postponed.)

The positive is that the cancer has not spread and his liver enzymes and bilirubin numbers are good. Unfortunately, the liver radiation treatment in December did not make enough improvement in the liver to make it in good enough shape for the abdominal surgery.

Sooooo...... the plan is to do a more conventional type of targeted radiation to the liver along with chemotherapy that helps the cancer as well as makes the liver more radiosensitive for the radiation. We see the radiologist tomorrow and Matthew will probably begin the new treatment next week. We'll be here for at least 2 weeks, may get to come home for awhile and then will return for repeated tests to see if surgery may be an option in March.

It was tough to hear but the decision was made by both the Oncologist and the Surgeon. We knew it had to be the right thing. We also know it has to be right because we (and you) have and continue to pray for God's guidance and His plan to be accomplished. We are claiming that today.

We were able to catch Stan before he boarded the plane and saved him the trip. Tiffani wanted to come on anyway. Looks like we are in for a few days of movies and eating out - a mini-vacation, if you will.

We will see the Radiologist today (Jan. 14) and Matthew will begin treatment next Tues.

We are regrouping and praying for the grace to be flexible. I told the guys that it's like training for a big race in the Olympics, getting your feet in the starting blocks and having the race canceled for a later date that is undecided!

I will continue to send updates when we know more about the upcoming schedule. We cherish your love and support.

Love,
Nancy

2010 Houston Update #2

Good morning. Hope all is well in your world today! I just wanted to update you on things in Houston so far for this trip.

Greg left Saturday and drove ALL THE WAY to Houston - 16 1/2 hours! He did well stopping often and listening to "books on tape".
Martha took Matthew and I to the airport on Sunday. We left right on time at 6:30 p.m.. We arrived early in Houston - @ 9:00 our time - 8:00 Houston time (CST).

Monday was a grueling day with appts, exams, tests, and scans. We began at 9 a.m. and left the hospital at 9:30 p.m.. Matthew was definitely a trooper. We're very glad to have Greg here with us this visit.

Today there are more pre-surgery appts and a full body Pet-scan at 2:30 p.m. We begin the schedule at 10 a.m. and should be finished by 6 p.m. - better than yesterday.
Another great aspect of today is that Ian is flying in this afternoon. It'll sure be good to have him here with us.

Yesterday, in the appt. with our surgeon's Physician's Assistant, the possible side-effects of this surgery and chemo wash were explained again in detail. They are daunting. But we know that for the past 3+ years, God has protected Matthew from the many side effects and permanent damage of the various chemos he has been on. We know He will continue to protect Matthew but I would ask for your specific prayers in this regard. Thank you.

Tiffani and Stan will be flying in tomorrow and we look forward to them being with us. We are praying for safe travel for Ian, Tiffani, and Stan.

There are MANY of you that have contributed Marriott points to help with our accommodations while we are here for such an extended stay. Thank you SO much. I want you to know that we are in a Residence Inn less than 5 minutes from the hospital. We are in a suite with 2 bedrooms/baths with living room/kitchen combo. It's a great set-up with one bedroom/bath downstairs and one up - kind a loft situation. There's a pull out bed in the sofa in the living room so there's plenty of room for us to spread out. A breakfast buffet is available each morning. We feel SO blessed to be here!

Thanks for letting me "chat" with you this morning. I would like to be having a "one-on-one" conversation with each of you this a.m. and this has helped me do just that!

Blessings,
Nancy

To Houston for Surgery

I hope all of you had a wonderful Christmas and New Years. Ours was quiet but ended up being amazingly busy.

The last time I spoke to you, Matthew and I were on our way to Houston for his liver treatment in December. We are happy to say that Matthew recuperated very well from the treatment and his liver enzymes have been lower which is a good sign and the doctors are very pleased with them. This is an especially good way for Matthew to go into surgery. Matthew will have scans the first of next week that should give us some results of what this treatment actually did in the liver.

We are leaving this weekend to go to Houston. Matthew's tests will begin Monday, the 11th. He will be admitted to the hospital on Wednesday with his surgery being scheduled for Thursday the 14th. We don't know the time for the surgery but I would say she'll begin early since it will last 10 to 15 hrs. The surgeon's name is Dr. Andrea Hayes-Jordan.

Greg, Ian, Tiffani, and even our beloved pastor will be there for the surgery. Family will stay various lengths of time for the first week or so. Greg will be there at least until Matthew is discharged from the hospital. Matthew and I may be there as long as 5 or 6 wks for his recovery and follow-up tests and treatment.

I will be keeping everyone posted along the way.

This is an amazing opportunity for Matthew and his future health. We are so thankful for the way God has continued to work in his life and the lives of those around us who bless us in SO many ways including the doctors and other medical staff that will care for him in the coming days. Thank you for all the ways you support us - through your love, prayers, smiles, hugs, encouraging words, cards & emails, and gifts of money, sky-miles and Marriott points as well as taking care of our home and our cats!! We continue to be so humbled by the generosity of so many. God bless each of you!!

Love and blessings,
Nancy