SIRsphere treatment

Just a quick word to let you know that Matthew had his SIRsphere treatment on the liver yesterday. All went well and Matthew is resting this morning. With the pre and post treatment process, the day was long (9am to 6pm) and exhausting but we are pleased it is done. We will remain here until Sunday since Matthew is still somewhat "radioactive" and can't be real close to people for an extended period of time. We will know the result of the treatment when we return in January and Matthew has new scans. The return date is Jan. 9 to have time for pre-op testing for surgery which is scheduled for January 14th.

God bless each of you and thank you for your love and prayers for Matthew and our family. Merry Christmas!

Love,

Nancy

SIRsphere treatment

Matthew and I will return to Houston this Wednesday (Dec. 16). Matthew will have a SIRsphere treatment on Thursday at MD Anderson 11:00 CST. This treatment is targeted radiation to the tumors in his liver. We will come home on the 20th to share Christmas with our family in Clinton.

We will return to MD Anderson in January for additional tests and surgery to remove all the cancer located outside the liver (in the abdomen area). There will likely be followup liver and chemo treatment. We will stay approximately 5 to 6 weeks at that time.

We are praising God for our Christmas miracles! May each of you have a blessed Christmas!!

Nancy

Houston - 4th Installment

We have now been in Houston a full 2 weeks. It has gone quickly but much has been accomplished.

Now that Matthew has completed all the tests/scans needed for evaluation, we have a "plan of attack".

He will continue the chemo regimen he is currently on to hopefully keep the cancer stable while other procedures are completed.

On Tuesday, Matthew will have the diagnostic part of the liver treatment called TheraSphere or SIRsphere. This will be a "dry run" to further determine if Matthew is a candidate for the actual treatment. He has passed all eligibility tests to this point. If all goes well on Tuesday, we will return mid-December for the actual treatment. We will need to remain for about 5 days at that time.

We will return mid-January for more scans and evaluations and the final "ok" for surgery. If the answer is yes, we will remain for the surgery and some follow-up treatment (a month to 6 wks).

I know many of you are just as shocked as we are with the option for surgery. I suppose you could say we hoped for this from day one but had been told absolutely "no" until we arrived at MD Anderson this month.

Matthew has had excellent care since we began 3 years ago: from Vanderbilt, to TN Cancer Specialists (precious people who have been with us every step of the way), to Sloan Kettering. They have provided us with the best treatments AVAILABLE at every step.

You see, Matthew's cancer is very RARE and not very cooperative. Even though study continues on it, there is still a minimal amount of information to work with that is helpful in combating it. It has a mind of it's own.

The surgeon at MD Anderson has been there for 5 years and has done DSRCT surgery for the last 3 yrs. Our coordinating oncologist says she is the best abdominal surgeon MDA has ever had. She has completed a "study" on the surgery for DSRCT (Matthew's cancer) and has done 20 successful DSCRT surgeries. She has recently added a "hyper-thermic chemo wash" to the end of the surgery that increases the success tremendously.

Many of her colleagues question her for doing this surgery because it is grueling and lasts from 10 to 15 hours. She told us she felt if she could help people with DSRCT through this surgery - without harm - she wanted to be able to do so. She also said that it is a blessing to her.

This journey has been a "step-by-step" proposition. Fortunately, we have a God who steps before us and with us on this treacherous path. I used to think that the scripture in Psalms that says, "Thy word is lamp unto my feet and a light unto my path", meant that the whole path would be lit up. I am learning as I pray for my faith to increase that the "light" comes right in front of us and many times, just as we step. The next step may still lay in darkness, but the Lord is holding us, leading us, and protecting us.

Matthew will have a chemo treatment on Wednesday morning. We will prepare to fly to Tennessee that evening to be home for Thanksgiving with Greg & Ian. We will be so happy to celebrate ALL the things we have to be thankful for. Since Ian, Matthew and I will arrive late on Wed., loving friends at our church have volunteered to bring dinner for Thursday! Wow!! THANK YOU SO MUCH! We love you all.

May God bless each of you as you share time with your families during Thanksgiving. We give Him the praise and glory for all He has done and is doing for us.

Love,
Nancy

#3 Houston Update

We have traveled many literal and figurative miles since our update on Wednesday. Two big items of news are Matthew's eligibility for liver treatments called TheraSphere and for (are you sitting down?) surgery.

Simplistically put, TheraSphere treatment of the liver is a "string" of radioactive beads smaller than human hair that is fed through the artery that goes directly to the liver and deposits the radiation into a predetermined tumor. The idea is for the radiation to "kill" the tumor (of which Matthew has many in the liver.)

As far as surgery is concerned, we spoke to an incredible surgeon, Dr. Andrea Hayes-Jordan, who has been at MD Anderson for 5 years and has done a study on a specific surgery for the cancer Matthew has: Desmoplastic Small Round Cell Tumor or DSRCT. It is RARE and not much study has been done on it anywhere. She has done 20 successful surgeries over the past 3 years for this cancer and feels Matthew is a possible candidate.

In order to erase all doubt that Matthew is eligible for surgery, Matthew will have CT's and CT/PET scans tomorrow as well as a series of MRI's on Thursday. So we should know something definite by Friday.

The amazing thing is that even if tests show that surgery is NOT an option, we still have other things we can do that we have already uncovered since we have been here!! Praise the Lord for options!

This past week was Matthew's week "off" of chemo and his white blood count, ANC, etc. hit an all time low. He received a Neulasta shot on Wednesday (thanks to our Dr. Kubove at Burzynski Clinic and Dr. Anderson at MD Anderson) and had to stay away from crowds. Friday, new bloodwork showed that the white count had doubled so we celebrated by heading to a Tex-Mex restaurant Friday evening. Mmmmm...... Hopefully Matthew will be able to resume chemo this week.

We have had a quiet weekend since Matthew hasn't felt up to doing much. It was a good rest after the busy week we experienced. Tomorrow the process continues. I will most likely wait until I have a definitive plan to report before updating the blog again.

Thank you for your continued prayers for wisdom and calmness as we face each day's challenges. I would ask a special prayer for Matthew that he will be able to rest. Sleep has been very difficult for him here in Houston.

A favorite hymn says:

Be strong, be strong, be strong in the Lord and be of good courage for He is your guide.
Be strong, be strong, be strong in the Lord and rejoice for the victory is yours.

Nancy

Houston Update for 11/11/09

Dear Friends and Family,

Good morning and blessings to you all as we begin a new day!

Since I spoke with you last, we have had time for relaxation and some good food. Matthew continued to feel well through Saturday but had tough days on Sunday and Monday. He improved a bit on Tuesday.

Monday was our biggest challenge so far in Houston. We visited MD Anderson for the first time. It is an enormous cancer facility with many facets set up to serve people from all over the world. And they were there - MANY people - from all over the WORLD.

We didn't have any problem finding our doctor's location and actually arrived early (at 12:15 pm). Then the waiting began. We finally saw the administrative person to sign legal papers, etc. Then waited until 3:00 before we finally saw the doctor.

Our visit with him was a bit overwhelming and frustrating since he and his staff were not totally versed on Matthew's case. Plus we began hearing suggestions of things we have been told "no" to from day one. Unfortunately, with the experience of the past 3 years we have become pretty adept at handling these situations but were caught off guard at this meeting.

We ultimately left the facility shortly before 6 pm needing to eat and exhausted emotionally and physically. After pizza, a movie and a good night's sleep we were able to sort through what we had heard at MDA on Monday. Basically, for the rest of the week, Matthew will be meeting with several doctors, have some tests and ultimately meet with the same doctor again Friday afternoon for the "ultimate plan" presentation. Tuesday was a much calmer and more informative day at MDA.

Today (Wed) we have "off" from appts and plan to enjoy the area, maybe finding a good "Tex Mex" place to eat.
We expect to hear from Burzynski Clinic today or tomorrow to set up an appt for their "plan presentation". How thankful we are for "options" when we thought there were none!

We continue to enjoy the beautiful weather here - mild temps and nice breezes. It's kind of feels like "beach" weather & that's always a good thing! Ha!!

Until next time...
Nancy

Update on Matthew in Houston

We wanted to update you on how things have been going since we left for Houston.

Matthew & I left Knoxville on Thursday, Nov. 5 at 6:30 p.m. The flight was great with no delays. After getting luggage and a rental car, we traveled 45 min to Houston to the Residence Inn. Greg had programmed the GPS so that we could just turn it on and go - to the hotel, the clinics and the Mall. Ha! Thanks Greg!

After a good night's sleep, we went to the Burzynski Clinic on Friday. They were VERY cordial & acted as if they were "waiting" for Matthew. They were ready at the front desk with a specific itinerary with his name on it. We went to the registration office and they said, "Hello, you must be Matthew!" Pretty nice. The lady who I had spoken to on the phone that is our case worker came in to meet us as well. She secured all the phone numbers we would need at the clinic during our stay and brought them to us.

Then we saw Dr. Eva Kubove. She has worked with Dr. Burzynski for 25 years. She knew Matthew's case inside and out and had lots of notes in front of her as she talked with us. We met with her approx an hour. In addition to asking Matthew many questions to complete his file, she was very informative about the type of genetic treatment they do, how it works and even about new meds coming out (one this Monday) that are testing positively for soft sarcoma (that Matthew has).

Dr. Kubove left us to consult with Dr. Burzynski and returned about 25 minutes later with him and another doctor, Dr. Weaver. They told us that depending on the results of his genetic testing (to determine genetic cancer markers), they will then be able to tell us what specific treatment would work for Matthew. That should be completed by Wed or Thurs when they will present their plan to us. If we choose to go with the treatment Matthew can start the next day. They agreed (and actually encouraged Matthew) to continue his current chemo in TN if it is keeping the cancer stable while this other treatment is working.

Our overall impression was very good.

On Monday, we go to MD Anderson for an appointment with Dr. Pete Anderson. I'll update you after that visit & then later in the week as have more information. We're not sure how long we'll ultimately be here but know we'll be here at least through next week.

Matthew has felt much better since we've been here than he has the past week in TN. We are praising the Lord for that! We actually went to the HUGE Galleria Mall, had supper and walked around last night. Then we went to the movies before coming "home" and crashing early.

We had an early breakfast and have been relaxing since- me on computer, Matthew playing a video game. I bought 5 Christmas gifts online this morning! How cool was that!

We are so thankful for how God is working in our lives (and others) during this process. We had precious friends that provided us with their Marriott points so that we can stay for 12 days FREE. (We are staying in a Residence Inn with 2 bedrooms/baths, kitchen/living rm.) Other good friends and our Sunday School class provided for our rental car and money for additional expenses. Nobody said anything about needs, but God impressed these things on their hearts and they came to us with their gifts.

Needless to say the amount of prayer that has been going up is phenominal! We are so appreciative & humbled by it. We know that God is in the midst of what we are doing and where we are going. He has given us a positive spirit and peace in our hearts.

May you and yours be blessed today. We'll chat again soon.

Love,

Nancy

A trip to Houston

Dear Friends and Family,

I've waited to send out a new update so that I could give the most up to date and complete information that I could.

In the last blog entry, we shared that the results from Matthew's scan (of 9/18) showed his cancer was no longer responding to the chemo regimen and had started growing again. Since then, we have been doing extensive research into possible doctors and/or treatments for Matthew.

Our New York doctor had nothing in the form of clinical trials to offer but recommended a new combination of chemo drugs that Matthew began on the 21st of October. The first round will be completed on Nov. 4th. He also gave us suggestions of doctors to contact at the National Cancer Institute and MD Anderson Cancer Hospital.

On Nov. 5th we will travel to Houston, Texas where we are scheduled to see two doctors. One is Dr. S. Burzynski at the Burzynski Clinic which provides a variety of treatment but emphasizes treatment at the cellular/DNA level. The other doctor is Dr. Pete Anderson at MD Anderson Cancer Hospital, a world renowned cancer research facility. We are unsure of how long we'll be in Houston since the Burzynski Clinic suggests we be available to remain for 3 weeks if necessary.

In addition we have been in communication with National Cancer Institute in Maryland where testing is being done to see if Matthew is elligible for t-cell therapy.

Matthew has a very positive attitude in the midst of all this. Physically, he is tired and has "good days and bad" as far as pain and discomfort.

I would ask for your prayers for wisdom to make appropriate choices, strength to meet the challenges of each day, and healing for Matthew.

Love and blessings to each of you,
Nancy

The journey continues...

Matthew had an ultrasound today to clarify what showed on Friday's scan as a possible blood clot. The ultrasound showed that there is no blood clot in his inferior vena cava nor is there any restriction there. Whew!! This is really good news because he will not have to be on blood thinner meds anymore and the risk has been eliminated! Praise the Lord!

We also received the results from the scan which showed that the chemo treatment Matthew has been on for over a year has stopped working so he will not be taking it anymore. The cancer has begun to grow rather than stay stable. We are still SO thankful for, at first, the reduction & then, the stability it has given Matthew for almost 15 months!

Our doctor will be contacting our New York doctor to start the process of Matthew's participation in the "protocol" or "clinical trial" at Sloan-Kettering. We don't know yet when that will begin or the steps that will need to be taken to get there. Our son, Ian, has also done much research and has found several options for us to consider as well. We are fervently praying for strength, courage, and God's guidance as we enter this next step of our journey.

"God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth gives way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear." (from Psalm 46)

4 day work week for Matthew

Matthew was able to take his chemo treatments last week - Tues, Wed, Thurs & Fri & got his shot on Sat. He didn't have to go back yesterday for a 5th treatment which was good. He did have a pretty tough weekend though but is doing a bit better now.

His next scan is this Friday (Sept 18) at 1 pm. We'll receive the results when we see the doctor next Wed (Sept 23). I'll update you at that time.

Our doctor here (Dr. Dobbs) had a conversation with our doctor in New York (Dr. Wexler). There is a clinical trial in process at Sloan Kettering with possibilities for Matthew for the future if the current treatment starts waning. The longer a person is on a treatment, the more the cancer cells build resistance to the it which is why Matthew's current treatment doesn't reduce the cancer anymore like it did for the first 6 months. It is now keeping it stable. The scan Friday will give us a clearer picture as to whether it is still, in fact, keeping the cancer stable.

Thank you for your continued prayer, love and support.

Blessings,
Nancy

Take your flexibility pill!

All-righty-then!  Do you remember the entry yesterday that gave you the "update" on Matthew's current schedule?  Well, forget it all. Ha!

We did, in fact, go to the scheduled chemo appt to begin the week of chemo yesterday.  They always take blood levels on the first day - routine.  What we didn't expect was that anything would be abnormal.  Matthew's platelets were low - just 96 - not bad - they treat at 100.  But... his platelets had been 160 the last time and this was a bit of a nosedive.  Plus he was getting all three chemo drugs on that day.  So, the doctor said, "No."  

So, here's the current schedule (don't put it in ink - use your pencil!):  Chemo begins next Tuesday (because of Labor Day), will go through Friday.

Then, we'll return on the following Monday to finish with a shot on Tuesday.  This will be a first to split it up like this.  We'll see.

The scan has been rescheduled for Sept 18.  We'll see the doctor the following Wednesday (Sept 23) for results.

After re-scheduling everything, Matthew & I took off for lunch.  We ate outside at Silver Spoon.  The weather was great, breeze delightful!  We talked and relaxed for quite some time.  (We also ate!)  There is a wild bird store next door so we watched tons of birds coming and going to their feeder and landing in bushes nearby.  What great entertainment!!  

After lunch, we were off to the Fresh Market to get fresh fruits and veggies to juice as well as some fresh fish.  After "juicing" later on, Matthew and friends went to Monday night cards.  

So, Matthew is looking forward to another week of feeling good.  We're looking forward to seeing a couple of movies, the UT game on Saturday, and Labor Day all without chemo side effects.  There are advantages if you look for them!  

The weather has felt a "wee bit" like fall the last 2 mornings - mmmm - preview of good weather to come!  

God bless each and every one of you!  

Fun at the beach!

Dear Friends and Family,

Thank you for your recent prayers for Matthew.  His last chemo went MUCH better than the last time and he was "on the mend" by the following Wednesday after chemo week.  Three days later we left for Va Beach to spend the week in a beach house close to all of our family.  Matthew had a good week and enjoyed the time.  We returned Sat. pm with a day to recoop.  

Chemo starts again today - back to the grind!  Matthew has a scan on Thursday of next week so I'll keep you posted on that.

Blessings to each of you. 

Love,

Nancy

Matthew is the big "25"!

Dear Friends and Family,

Matthew just celebrated his 25th birthday!  We've stretched the celebrating over a couple of weeks.  Ian was here the last week of July, Matthew took a trip to Gatlinburg on his actual day (the 8th), and we had a celebration with friends yesterday.  He has felt well and enjoyed his celebration!

With a vacation trip and Matthew's birthday, it's been 5 weeks since his last chemo rather than 3.  The extra 2 weeks have been great for Matthew.  Today, we return to chemo for the week (Aug 10 - 14).  

Next week is Matthew's recovery week at the end of which we will travel to Virginia Beach to be with family.  We have rented a beach house (the same one we did 3 years ago).  Ian will be in for the week with us as well.  We look forward to being with family and enjoying the beach.  

We do not have a scan scheduled at this point but imagine when we see the doctor next we will discuss it.  

Our prayer requests this week include:  1.  that this week of chemo will be very effective on the cancer; 2.  that Matthew's side effects will not be too extensive (the heat adds to the discomfort); 3.  that Matthew will have a quick week of recovery so that he can enjoy his trip and week at the beach.

Thank you for your prayers, your love, your support and joining us in celebrating Matthew's 25th birthday.  God's blessings are evident in our lives.

Love, Nancy

ps - I bought a bracelet this weekend that says, "God surrounds us by His grace."  May each of you feel His grace surrounding you today!

Matthew Update for June 8, 2009

I hope all of you are on the way to a wonderful summer!  Enjoy each day because it passes all too quickly!

Matthew has been continuing the same chemo treatments and schedule that he has been on since last July.  In the last 2 months he has incorporated a special diet of juicing veggies and fruits, no sugar, more fish and little meat, low on the dairy and processed products plus doing organic as much as possible.  

There was a lot of cancer reduction in 2008 but as 2009 arrived, the reduction stopped and stability took its place.  

Matthew just had a scan on June 1 with the results being:   "no better, no worse, everything stable".  Even though we'd love to be seeing reduction, this is still very good news.  

Matthew started up another round of chemo today.  His usual Temodar, Avastin, and CPT-11 (if that actually means anything to anyone!  Ha!)  This is the same "recipe" devised by Dr. Wexler at Sloan-Kettering in New York a year ago.  He had a great day today with no problems at all.  (We are ALWAYS thankful for that.)  He will return each day this week for treatments and receive a Neulasta shot on Saturday (to help keep his white blood count up).

Prior to the scan on the 1st, Matthew was able to go to the beach for a week and had a SUPER time!  Woo hoo!  (All SUPER times are cherished!)

Thank you for continuing the journey with us.  We SO appreciate your love and prayers.  We couldn't make it without those 2 important components.  We would appreciate your specific prayers for moderate side effects of the chemo, continued energy for Matthew and new treatments on the horizon that would specifically treat DSRCT (the rare cancer that Matthew has.)

As you can see God continues to bless us in many ways, big and small.  What a great God we serve!

Love to you and yours, 

Nancy

Beautiful Day in Tennessee!

Wow!  What a beautiful day in East TN today!  Yesterday and today the temps are reaching the 80's so it really feels more like summer than spring.  The sun is shining from a gorgeous blue sky. Everything is very green already and almost looks like it's growing before our eyes!  What a glorious spring.

Matthew just completed a week of chemo and had his shot today.  He is sleeping as I type this update.  We are very thankful he has had an easier week than last time (3 wks ago).  He will have 2 wks off, another week of chemo and then the doctor plans to schedule a scan.  To this point in 2009, the cancer has remained "stable".  

Matthew has felt pretty well between treatments and is eating well.  He has begun a new diet that is geared around a plant-based diet, soy instead of regular dairy, mainly fish with little meat, organic as much as possible, nothing containing sugar or high-fructose corn syrup plus juicing vegetables and fruits.  

Matthew has always had a lot of will power and the ability to stick with something once he's started.  His handling of this new diet is no different.  He's doing SO well!  Greg and I are joining in the diet with him as well as his brother Ian in DC.  Actually Ian is the one that has done all the research and is responsible for us being on the diet and doing the juicing.  Thanks Ian for your hard work!!

If all goes well in May, Matthew is planning a trip to the beach with friends.  He is really looking forward to that!!

Thanks for your continued prayers for us as we travel this arduous journey.  I pray that you will be blessed beyond measure for your faithfulness.  

Nancy

The journey continues...

Tomorrow will be one month since I updated everyone on Matthew.  Hard to believe, but he has completed 2 full weeks of chemotherapy (the week of Jan 26 & this past week).  Thank you so much for your specific prayers because Matthew's side-effects these two rounds have certainly been there but not as severe as previous times as well as the fact that he has had an amazing spirit and peace about him as he has returned to this grueling schedule. 

The rest of us have felt the strength and support of your prayers as we help and support Matthew day to day.  It still doesn't get any easier seeing him suffer and face such unbelievably tough challenges but as his doctor told him 2 1/2 years ago - "This is your job now, Matthew" - and it is our job to be on the journey with him every step of the way.

Saturday and Sunday after the week of chemo is the most difficult but after the January round, Matthew started feeling a little better on Monday which is earlier than usual.  We are praying for the same thing tomorrow (Monday).   (btw:  There isn't a scan scheduled at this point. Matthew will have at least another week of treatments and maybe more before one is put on the calendar.)

If all goes well in Matthew's recuperation process this week, he and I are planning a trip to visit family on Thursday.  We plan to see Ian in DC first and then take him with us to Va Beach to visit the rest of our family.  This week is my Mom's 88th birthday so we are exited to be there for the celebration.  It'll be laid back and flexible to take Matthew's rest schedule into account. We are praying for traveling mercies as well as physical stamina for Matthew & I.  (Also, that Mom will not be too overwhelmed with the large family get-together.  We can get pretty rowdy! Ha ha!!)

There are many that read these words and each of you face challenges in your lives, big and small, including the uncertainty of the economic situation in our country.  My prayer for you is that you will find some peace, calmness, and strength in each day and that God will bless you with His goodness.

Love to each of you,

Nancy

2009 update on Matthew Fay

Happy 2009!!!  Hope your January has been great so far.

It is amazing how over the past 12 months we have re-established relationships from MANY years ago (high school, college, early family friends, etc.) most of which have been through e-mail and Matthew's blog.  Whether we have spoken through computer, by phone or in person, rest assured that we are SO appreciative of you being in our lives!  As we have updated each other on our lives, love, caring and prayers have begun to flow in many directions, mounting up strength beyond belief.  Thank you for these renewed relationships.

And for those who are in our daily lives, your love and steadfast commitment to us through your prayers, strong arms and listening ears are immeasurable.  God bless you for standing by us.

The Fays had a wonderful Christmas and New Years.  Ian was with us for a week at Christmas so we had a great time as a family even though we were unable to see our extended family this year.

Matthew has been taking 1 medicine (Avastin) since the end of Nov. 08.  There have been no side effects and he has been able to grow his beard back as well as a little hair on his head.  His energy level has increased and he actually went on a ski weekend with Ian and some friends. They had a blast.  It has been a fabulous break for him.

When we saw the doctor in early January, Matthew had a long discussion with the doctor as to the best treatment plan for the future.  He could continue the Avastin and wait to see if the cancer remained stable or resume the treatment of 3 meds (Avastin, Temodar & CPT 11) which could possibly give him better odds.  Even though he will return to severe side effects, loss of hair and feeling bad about 1/2 of the time, Matthew chose to resume the 3 meds.

Monday, Jan. 26, Matthew will return to the schedule he's been on for the last 6 months:  a cycle of one week (5 days) on chemo and 2 wks off.  It will be a while before a scan is done so we won't have any official word on his status until then.

Some suggestions for specifics in your prayers include:  1.  that the side effects will be minimal for Matthew;  2.  that there will be renewed effect of the meds meaning more reduction of the cancer;  3.  that Matthew will have peace as he begins a new round of extensive treatment;  

4.  that his Mom, Dad and Brother will have what we need to help Matthew in the way we need to;  5.  that new treatments will become available.

God is working in Matthew's life, without a doubt.  At the last visit, during the discussion with the doctor, he actually said that what Matthew had experienced as far as results over the last 6 months was "nothing short of miraculous."  Of course, we agreed wholeheartedly!

Again, thank you for your love, friendship, support and prayers for us.  I look forward to hearing form you.

Love and blessings,  Nancy