Friday, February 29, 2008

Friday in New York

I still can't believe we're in NYC!!! Somebody pinch me and wake me up!
Matthew is napping as I type. He had quite a morning. We arrived at the hospital at 7 a.m. and met with Dr. Wexler for Matthew to sign all the necessary legal documents to take part in the clinical trial. He, then, escorted us downstairs to the imaging center for his scans. Yes, I said that the doctor, the best in his field in the country, escorted us to Matthew's scan location. We had a wonderful conversation all the way there.
Then, Matthew started his delightful adventure of drinking about a quart of foul, thick stuff for his Petscan which took 2 hrs to complete. Then, he was given another quart of another absolutely awful concoction to drink for the CT scan. All this on an empty stomach, of course. Scans were completed by 1 p.m. afterwhich Matthew went for a burger and fries!!
Dr. Wexler has called twice since we have returned with numbers to the Corporate Angels for us to contact about flights for Matthew's weekly treatments. Hopefully, we can work out something. After 6 wks, new scans will be done to see if the treatments are working. Then, treatments will continue (weekly) for another 6 wks, then scans and so on in 6 wk intervals. So, we will be able to know where we stand pretty quickly.We have to be at the hospital at 9 am Monday for his initial treatment, additional bloodwork, EKG's and other initial tests that need to be done. Should be done by @ 1 pm.
Greg just came in and gave me news of another of God's miracles today. He called Delta about Matthew's and my flights that are supposed to leave with Greg on Mon @ 4:30 p.m. Greg explained the situation and that we didn't know when Matthew and I would be flying out. The person he spoke to immediately said, "Well, you have enough to deal with at this point. I will put a note on these tickets that they are "open" until you need them and there will be NO fee." OK, are you believing in miracles out there??? No doubt!!
Ian will arrive in early evening. We look forward to a fun weekend. Probably won't hear from me for a couple of days (unless I find a great deal at one the stores here! Ha!) Love to all, Nancy

Thursday, February 28, 2008

News from New York

We arrived in New York Wednesday afternoon with no problems. We got settled in the Ronald McDonald House which is very nice and the people are SO nice and helpful. $35 per night in Manhattan!!!! We qualify because this is a pediatric cancer and are working with the Pediatric Dept at Sloan Kettering. (Be sure to drop your coins in the donation box the next time you are in McDonalds!)
Today (Thursday) we had quite an amazing day! We met Dr. Wexler at Sloan Kettering this morning who had a precise grasp on Matthew's condition and treatment beginning with 11/06 and all committed to memory. He explained in more depth about Matthew's cancer (Desmoplastic small round cell tumor or DSRCT). As we knew, it is a tough cancer and with the year of treatment and three treatment medications that have now stopped working, the cancer is even tougher to fight.
He presented us with 3 possibilities. The first two choices were combinations of chemo regimens that we would use until it became unsuccessful. Then, we'd try another type of chemo regimen.
The third choice was a clinical trial that is being offered to Sloan Kettering for patients with various forms of sarcomas. Sloan Kettering will only have 25 patients that will be able to participate and only 258 patients will participate worldwide at other hospitals.
The treatment would be given once a week through the IV/port and would last about one and a half hours. So far, they believe there will be no adverse side effects that patients typically have with chemo.
The way the treatment works is by blocking the message receptor to the cancer cell that tells it to grow or multiply. Ultimately the hope is that the cell would die. Amazing!!
It took Matthew, Greg & I about a minute (or less) to opt for the clinical trial option! Then, Matthew had to qualify by meeting a several page list of criterion. After bloodwork & chest exray was done at noon, we found out at about 3:00 p.m. that he had qualified!!! Praise the Lord!
So, Matthew will have a Petscan and CT scan in the morning and will begin treatments on Monday. He will have 6 treatments (6 weeks, 1 per week) and then they will repeat the scans to see if it is working. If it is, we will continue. If not, we'll go for one of the other options presented today.
Dr. Wexler was very careful to give us information about the choices and not do a "sell job". Once we showed our interest for the clinical trial, he said that he and his colleagues don't recall when they have been so excited over a clinical trial. Obviously, there are no guarantees but we feel this is a chance of a lifetime for Matthew!!
We also feel that God's timing is so evident in this opportunity. He is continuing to honor the many prayers that are being prayed for Matthew. Thank you for those prayers.
On a lighter note, Matthew is meeting a friend from high school for dinner tonight that just took a job in New York. How cool is that?
Greg will return home on Monday. Matthew and I will stay for a couple of weeks at least to see how he does on the treatment. Then, we'll come home and fly up weekly for his treatments. Many of you have offered your sky miles to help out. We may have to take you up on your offer. But not just yet. Dr. Wexler says there is a program called "Corporate Angels" that offer their company jets free of charge to transport people in our situation that live very far from our treatment location. He is checking to see if we have that in our area!
I promise to do a better job keeping the blog updated as we have new info. Thank for your love, prayers, and that you are "staying the course" with us on this journey. Nancy

Friday, February 22, 2008


I know it's been since November that I updated the blog. Our lives have taken many amazing twists and turns. Matthew began his new chemo treatment in December and had a second treatment in January. The treatments lasted about 3 hrs each day for 5 days. In between the treatments, Matthew celebrated Ian's 30th birthday by going on a weekend ski trip. Matthew absolutely loves to snowboard and had to skip it totally last year. This year the doctor said "OK". He had a blast!
After a scan at the end of January we learned that the new treatment had failed. The cancer had not only not reduced, it had grown by a small margin. So, now we are on to Dr. Leonard Wexler at Sloan Kettering in New York. We have an appointment for Thurs., Feb. 28. We will be prepared to stay for treatment depending on what the doctor recommends. He has all of Matthew's records up to the current scans and has reviewed them already.
We feel SO blessed that we have the opportunity to see this new doctor. He is a specialist in the research and treatment of the rare kind of cancer Matthew has. Please pray that he has the very plan that will ultimately bring about Matthew's healing.
Once we know the "scoop" I'll try to update everyone. Blessings to you all, Nancy