Saturday, March 29, 2008

Just a quick note

Just a quick note to let you know that Matthew has improved over the last few days. We are so thankful! This is so good because he'll be better equipped to handle the trip tomorrow.
We leave at 7 a.m. on Sunday and have a lay-over in Cinncinati. It was the only flight we could get since Delta is cutting back on flights these days.
Matthew's treatment is at 10:00 a.m. on Monday. We'll return on Monday evening. I'll update everyone after I get back.
Hope each of you has a wonderful week.
Love, Nancy

Tuesday, March 25, 2008

Good News for Tuesday

Thankfully Matthew was able to take treatment #4 today and he & Greg will be coming home tonight!
They are taking the late flight because it is a direct flight with no stops. I'll pick them up about midnight.
Matthew is on an antiobiotic, his fever is coming down, and he actually had some Fruit Loops this morning. I just received a text from Greg that the treatment is over and they are heading back to Ronald McDonald House to rest before the plane ride. Hopefully, that will build Matthew's energy for the trip.
We are praising the Lord for good news today!

Monday, March 24, 2008

Treatment #4

Just an update to let you know about Matthew's week home. It ended up being very difficult with alot of pain. We were in touch with New York several times and had to go to our local oncologist as well.
With pain meds in tow, Matthew was able to return to New York on Easter Sunday with his Dad to hopefully have treatment #4 today. Instead of treatment, many tests were done to try to determine the reason for the pain and fever. After a difficult day of a rollercoaster of news, Matthew's doctor determined that there was nothing alarming in the tests but that the pain is probably from the tumor.
Matthew is feeling better and the doctor has changed some of his meds and has determined that it would be ok for Matthew to get a good nights rest, and, barring any complications, have his 4th treatment tomorrow and then go home tomorrow night. So, that's the plan!!
Thanks so much for your continued prayers.

Tuesday, March 18, 2008


Dear Friends and Family,
I'm sorry it took me so long to update you about the latest with us. I have to admit I've been a total "blob" today (Tuesday - 3/18) trying to get over the 3 weeks gone plus the amazingly long day yesterday trying to get home to Clinton, TN. But, yes, we are, in fact, HOME!!!!

Our weekend was pleasant with our family in for a visit. We ate out at the Japanese restaurant again (at Matthew's request), looked around in some beautiful stores, and saw their oldest daughter's apartment that lives in Chelsea in Manhattan. They joined us at the hospital on Monday during Matthew's treatment which was very cool since we're used to it being "just us"!

After the treatment on Monday, we returned to Ronald Mc House and rested for awhile. Matthew and I neither one rested very well in NY so we always needed a little rest to get through the day. Sure glad we got it because we would need it later on.
We had to vacuum, clean the bedroom and bathroom, and wash & fold linens before we could be inspected to leave Ronald McD House. We already have a room reserved there for the weeks we will return for Matthew's future treatments. They are SO great there.

We packed and decided to go ahead and get a cab and wait to eat at the airport so we wouldn't rush. As soon as we sat down to eat at the airport, we found out that our flight was delayed an hour, from 9:30 to 10:30 pm. It was 7:45 p.m. at the time. Yes, we had PLENTY of time!!
We finally boarded at 10:45 p.m. on a through flight which put us in Knoxville at 1 am and home at 2 am. We drug in the suitcases, brushed our teeth and went to bed! Ahhhhhh! In our OWN beds!

The good news is that Matthew made it through the evening just fine and has felt well today. He's played his video games, talked with his friends and had a buddy over for a while. It was good to hear him laughing with his friends. That's always a good sound!

We found out from Corporate Angels today that they will not be an option for us because there is no one they work with that flies out of Knoxville because the airport is so small. We thankfully have precious friends at church who have made our next few trips available through their sky miles.

Greg is planning to go with Matthew for his next treatment. They will leave Sunday evening (Easter) and return on Monday evening after Matthew's treatment that day.

I will continue to keep everyone updated on Matthew but possibly not quite as often. Let me express my deepest gratitude for the calls, cards, gifts, and e-mails we have received over the past 3 weeks while in NYC. We have received so much encouragement and strength from them. I still love to get up each morning and the check the computer to see what "mail" I have.
Many of you I look forward to "hugging" in person in the next few days!!
God bless each of you.
Love, Nancy

Friday, March 14, 2008

Another week in NYC

Good Morning,
It's Friday morning, March 12 and we are having a quiet morning in New York.
Greg arrived last night at about 9:45 p.m. After unpacking, the three of us walked to our favorite Italian restaurant around the corner so Greg could get a bite to eat. No plans for today yet.
Matthew has done well this week since his treatment. He's been able to get out and do a few things with his friends that are here. That at least helps him get a break from me on occasion!!
Greg's sister, husband and daughter are coming in this evening for the weekend. We are looking forward to spending time with them.
We continue to be overwhelmed by the generosity and love being sent our way during this part of our journey. Many of you have offered skymiles and through Greg's Sunday School Class coordinating things, we have several tickets already lined up to get us back to New york for Matthew's weekly treatments. Isn't that amazing? Matthew and I are SO appreciative because we can't wait to be home. Some people don't have the option to go home, so we are truly thankful and are praying for those who can't.
Our prayer request today is for strength to be positive in this time of uncertainty.
Love, Nancy

Monday, March 10, 2008

Just a quick update

Matthew had treatment #2 today without any problems. But since they are SO thorough, he was examined by the nurse practitioner and one of the doctors on the team, had his blood checked twice, blood pressure and temperature taken 4 times during the treatment, etc. We were there from 10 am to 3 pm. The actual treatment only takes an hour. Yikes!
He has to go tomorrow for a Petscan at 4:30 p.m. He can't eat for 6 hrs prior to the test so we're getting up early and I am cooking a BIG breakfast so he can eat before the 10:30 a.m. deadline.
We are off for the rest of the week. If all goes well the next couple of days and Matthew has no reactions from the meds, we will plan to be here for next Monday's 3rd treatment and then come home.
Greg is coming in Thursday evening and will be here for the treatment. We hope to get the same flight he has to return Monday evening. Once we are home, we'll be making the weekly flights to get Matthew here for his Monday treatments. We are both looking forward to being in good ol' Clinton, TN!
Let me say a humble and heartfelt thank you to those who have already helped make it possible for Greg to fly up this weekend and for those who have offered sky miles to get us back up here as the weeks and treatments come and go. We hope for MANY weeks since that will mean the treatments are working. I may have already said this, but after the sixth treatment a Pet and CT scan will be done and we will know for sure if it is being effective. If it is, we can keep on going for as many as 18 weeks total.
We have a precious nurse, Ava, that takes care of Matthew from beginning to end every time we are at the hospital. God once again has blest us with one of His Angels - this one is named Ava!Nancy

Sunday, March 9, 2008

New York Nicks

We went to the New York Nicks game last night at Madison Sq Gardens thanks to my nephew, Kip, in VA. Unfortunately, yesterday afternoon, Matthew started feeling really badly. I suggested some meds that might help and then he laid down to rest. I went ahead and got ready and prayed.
The final decision that he felt like giving it a shot to go was made about 30 minutes before we needed to leave. We took a cab, arrived and got our tickets that were waiting for us. Then...
The room had it's own 2 rows of comfortable stadium seating. We sat in the front where the glass is and had a perfect view. There was food - hot dogs to die for, chips, cheese, fruit, drinks, etc. The sauerkraut & dog was top notch!! (Don't say yuck - I love sauerkraut!) Matthew got feeling so much better that he ate 2 hot dogs and sampled everything else as well! He hadn't been able to eat all day.
The game was great!! The score ended up at 108/108 and went into overtime. The Nicks lost but the locals said they played better than usual. #4 - Robinson scored 45 points (a career record) and he was only 5'9"! The rest of the guys were from 6'6" to 6'9".
I was so thrilled that Matthew got feeling better to be there and enjoy. We laughed and routed for NY like we were New Yorkers. Fun stuff.
Hope you all have a blessed Sunday, Nancy

Saturday, March 8, 2008

Saturday in NYC - rainy, dreay and cold

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

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 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