Good morning!
It is Saturday morning in NYC... dreary, cold, and rainy. Unfortunately, it's the 3rd day this week like this. Oh well, we needed the extra rest inside anyway.
Matthew developed a cold Wed night with a low grade fever. We went for bloodwork on Thursday and really struggled to get there, he was feeling so badly. Unfortunately, he had to "fast" and not eat 8 hours before the test which didn't help things. In addition to the clinical trial bloodwork, they did blood cultures and other tests to make sure there was no bacteria anywhere. So, thankfully, his cold was viral.
I'm glad to say that Matthew was feeling alot better last night so it looks like we are on the mend. Just in case you are wondering, this cold had nothing to do with his treatment. His next treatment is Monday morning at 10:00 a.m.
Everyone continues to be so generous to us. Greg has been invited out to eat 4 times so far so he's being well taken care of at home. Also, Greg's Sunday school class has gotten him a flight so he can come visit us next weekend. How cool is that?? Thanks SS friends!!
My nephew called me this week and said he had a friend who was able to get us tickets to the Nicks game (vs. Portland) tonight at 7:30 p.m. at Madison Square Gardens!! We will be in a "suite" with 8 chairs and it's own bathroom. We cant wait!! You da man, Kip!! So glad Matthew is better to be able to go!!
So are you ready for my "escapade" yesterday? I decided since Matthew was ok, I'd go out for a little while. I took the subway downtown to Macy's to shop. There are lots of other stores right there, too, so I thought I'd be set for a couple of hours.
I left here at 3:00. I got to Macys to realize that I needed another map similar to my subway map to find my way IN the store - 7 stories - tons of elevators - tons of people - in the store. I shopped a bit and decided to buy some "good" shoes. They were a little pricey but if they would help my feet it would be worth it.
My phone was going dead so I had it "off" until I called Matthew to check in. He told me it was raining and I said I would start heading back. I walked out of Macy's to find it was raining cats and dogs and me with no umbrella. Now what? So I started walking and getting wet. Suddenly a guy walked by me selling umbrellas for $3. Needless to say that was an amazing blessing.
So, then I started trying to hail a cab. Nothing doing. Because it is now around 5 pm, downtown NY, raining and just about every cab is full! I thought to myself I would pay a hundred dollars for a cab to just GET ME HOME!!
I stopped to got shelter in a store front area to put on my coat, scarf and gloves. I laid down my Macy's bag and when I picked it up it fell apart from being wet. So I took the shoe box out and put it in the large shoulder bag I had with me. I found a trash can and threw out the Macys bag.
I kept walking and trying to hail a cab every now and then. There were a million buses...if I only knew which one to take! Ha! By the way, have you ever tried to walk on a very crowded NY sidewalk, people going both ways.....WITH UMBRELLAS!!!
I finally walked the 8 blocks from Macy's to Grand Central to get on the subway. I stepped on the subway and the door closed ON me. Thank heavens for the guy on the subway that opened it for me to get in! (I told you it was funniest home videos!)
I got off the subway at 68th and tried to get a cab once again. I walked a block trying to do that and when I realized I had walked a block in the wrong direction, I thought I would scream!!! I am now drenched, including my shoulder bag and the shoe box IN the bag.
Finally a cab stopped to unload a passenger and motioned for me to get in next. I was so thrilled to be in the cab. I thought hugging the cab driver would have a been a little overboard so I restrained myself. He deposited me at Ronald McD and I drug myself to the 9th floor.
I announced to Matthew that I would probably never leave the house again while in New York. I told him my story and of course he laughed and eventually got me to laugh, too. I told him that the shoes I bought better be the best shoes I've had in my life!!!
Thank you for the comments on the blog. It is phenomenal that some of you don't even know us personally yet you continue to pray for and support us because your friends have asked you to!!
So many of you have asked what can you do to help us. As a need arises, we certainly will let you know. Sometimes the comment is "I guess all I can do is pray". That is the biggest thing you can do! Just think that all of you out there that are praying are a part of this miracle unfolding for Matthew. If it ends up helping others with this type of cancer also, you will be a part of that as well. Our hearts and minds are joined together in an amazing journey together. I praise the Lord for the opportunity!! Love to all, Nancy
Saturday, March 8, 2008
Monday, March 3, 2008
Sunny and warmer in NYC
Today went well for Matthew's first treatment at Sloan Kettering. We were there at 9 am and left about 1:30 pm The actual treatment took 90 minutes. He is feeling well so far - so thankful for that. We go back for blood tests Tues and Thurs then we are "off" until next Monday when Matthew will have treatment #2.
Not sure when we'll be home. We'll be here at least until after the 3rd treatment, maybe longer. After the 6th treatment, more scans will be done. If the treatments are working, we'll continue them. If not we'll be done. There will be a recheck every 6 weeks to access how well the treatment is working. The doctor even ventured to say that if it works like they want it to, maybe surgery could maybe become an option by late summer. But...I'm getting ahead of myself....one step at a time!!
Matthew's treatment is called R1507. It is an antibody that is supposed to attack a certain protein in cells (in this case - the insulin-like growth factor 1 cell receptor). By blocking this protein the hope is to prevent tumor growth and cause tumor shrinking. We are praying for it's success in Matthew as well as the other 257 who will participate. If it works for us, there are potentially thousands that this could help once it is approved by FDA.
We had quite a busy weekend. We decided to splurge Saturday and go to see "The Lion King" on Broadway. It was amazing!!! Then, we woke up on Sunday and there was a note in the "house" (that's the Ronald Mc House) that there were complimentary tickets for "A Chorus Line" at 3:00 p.m. So, we were able to go!!! FREE!!!! Another fabulous time.
Greg left this afternoon and Ian left this evening. Matthew felt well enough to go hear a band with a friend of his that works here in New York. Mom, the old fogey that she is, is happy to be back at the RM house, in my room, in comfy clothes, talking to you (or should I say "typing" to you.) My feet and legs can't believe what I've done to them these past 6 days!! Matthew and I are definitely sleeping in tomorrow!!!
I'll send any knew news as we have it. Love to all, Nancy
Not sure when we'll be home. We'll be here at least until after the 3rd treatment, maybe longer. After the 6th treatment, more scans will be done. If the treatments are working, we'll continue them. If not we'll be done. There will be a recheck every 6 weeks to access how well the treatment is working. The doctor even ventured to say that if it works like they want it to, maybe surgery could maybe become an option by late summer. But...I'm getting ahead of myself....one step at a time!!
Matthew's treatment is called R1507. It is an antibody that is supposed to attack a certain protein in cells (in this case - the insulin-like growth factor 1 cell receptor). By blocking this protein the hope is to prevent tumor growth and cause tumor shrinking. We are praying for it's success in Matthew as well as the other 257 who will participate. If it works for us, there are potentially thousands that this could help once it is approved by FDA.
We had quite a busy weekend. We decided to splurge Saturday and go to see "The Lion King" on Broadway. It was amazing!!! Then, we woke up on Sunday and there was a note in the "house" (that's the Ronald Mc House) that there were complimentary tickets for "A Chorus Line" at 3:00 p.m. So, we were able to go!!! FREE!!!! Another fabulous time.
Greg left this afternoon and Ian left this evening. Matthew felt well enough to go hear a band with a friend of his that works here in New York. Mom, the old fogey that she is, is happy to be back at the RM house, in my room, in comfy clothes, talking to you (or should I say "typing" to you.) My feet and legs can't believe what I've done to them these past 6 days!! Matthew and I are definitely sleeping in tomorrow!!!
I'll send any knew news as we have it. Love to all, Nancy
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
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
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
February
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
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
Thursday, November 15, 2007
I'm back!!
Sorry I've been off the blog for so long. To say that life has been busy is the biggest understatement you can imagine! I do want to bring you guys up to speed on the latest. Matthew had chemo from August through the end of October. Since he's over 3 weeks away from his last chemo, he's really feeling pretty good.
Matthew had scans last week and we got the results on Wednesday (the 14th). The results were what the doctor called "marginal", no big change. Apparently, Matthew's body has built up resistance to the chemo drug he was taking making it ineffective.
The doctor has suggested a new drug which has been in use for 3 years. He will also be checking with Matthew's doctor at Vanderbilt to see if there are any new treatments on the horizon. We are prepared to go to any of the major cancer research hospitals that would be a help to Matthew.
We go back to the doctor in 2 weeks when we'll know whether we start the new drug right away or be on the road to see a new doctor. We appreciate your prayers in this regard.
Greg has declared that these 2 weeks are a "vacation from cancer." Since there's nothing else we can do until we see the doctor and Matthew's is feeling ok, we're going to be as normal as possible until then. We are looking forward to Ian coming in from D.C. for Thanksgiving!! Maybe we'll have another early "Black Friday" shopping spree like last year!!
Matthew had scans last week and we got the results on Wednesday (the 14th). The results were what the doctor called "marginal", no big change. Apparently, Matthew's body has built up resistance to the chemo drug he was taking making it ineffective.
The doctor has suggested a new drug which has been in use for 3 years. He will also be checking with Matthew's doctor at Vanderbilt to see if there are any new treatments on the horizon. We are prepared to go to any of the major cancer research hospitals that would be a help to Matthew.
We go back to the doctor in 2 weeks when we'll know whether we start the new drug right away or be on the road to see a new doctor. We appreciate your prayers in this regard.
Greg has declared that these 2 weeks are a "vacation from cancer." Since there's nothing else we can do until we see the doctor and Matthew's is feeling ok, we're going to be as normal as possible until then. We are looking forward to Ian coming in from D.C. for Thanksgiving!! Maybe we'll have another early "Black Friday" shopping spree like last year!!
Wednesday, July 11, 2007
No School This Fall
We have finally gotten the final word on the plan of attack for Matthew at this point. Since the chemo has continued to work on the cancer, the Oncologist from Vanderbilt wants to continue with two more cycles which will begin on July 30 and continue through November when another scan will be done. With this new plan, school is out of the picture for now for Matthew which is a big dissappointment. We are adjusting to the additional 4 months of treatment and are kind of glad we didn't know we'd still be at this when we started last December!!
Thank you all for hanging in there with us with your love, prayers and support! That and the love of our great God is what will continue to sustain us! Love, Nancy
Thank you all for hanging in there with us with your love, prayers and support! That and the love of our great God is what will continue to sustain us! Love, Nancy
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