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
Friday, November 20, 2009
Sunday, November 15, 2009
#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
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
Wednesday, November 11, 2009
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
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
Saturday, November 7, 2009
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
Monday, November 2, 2009
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.
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
Nancy
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