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