Sunday, January 11, 2009

Sunday, January 11, 2009

Quote of the day (Thanks Charlie!): "Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." ~ Bill Cosby

Humor is a very powerful defense mechanism and really helps us deal with challenging and difficult times. I have found in the past three days I have laughed more than I have during the entire six month ordeal. I am not sure what that indicates, other than being away from the hospital environment has medicinal value!

We had every intention to leave the house and get on the road at 10am today. Well that just did not happen. Peter and I did not get to bed until around 3am. Between packing and getting organized, not to mention work commitments (I was working to 3am and Pete past that), it was just impossible to get to sleep any earlier. But as 7am rolled around Mattie was up. I tried to finish packing this morning, so by the time we loaded the car, we did not start our trip until 11:40am. Prior to leaving, JJ (our resident Jack Russell Terrier) came by to say one last good-bye to Mattie. I think after his own house, ours is JJ's second favorite. Mattie and JJ will miss each other this week.

Before I proceed to tell you about our journey, I must first deeply thank Lana and Mirela for their incredibly generous and thoughtful care package that was delivered today. Lana is one of Mattie's preschool teachers from RCC, and Mirela is a friend and RCC parent. These ladies got together and basically stocked us up on all sorts of food products for our trip. There were homemade muffins, bread, oatmeal, chicken salad (that was incredible!!!), pulled pork with a fabulous BBQ sauce, chicken soup, macaroni and cheese, cold cuts, cheeses, drinks of all sorts, my friend Karen's favorite chocolate, treats from Hawaii, and a whole bunch of teas, ciders and coffee. How on earth do we ever thank you?! We feel very blessed to have been given such plentiful and tasty foods. Thank you Lana and Mirela, you started our trip off right, and in fact we were just too tired to leave the hotel for dinner, and we had a whole buffet of wonderful foods thanks to you!

We also want to thank Tamra and her daughter, Louise, for going to Treetop toys and putting together a travel bag of items for Mattie today. Thank you for the rubber lizards and the putty. I think those were his favorites, but we look forward to playing the game and looking at the travel book as well. That was so thoughtful of you to think about keeping him busy on the car trip up.

Mattie really did not care what he brought with him to NY, other than the blue stuffed animal dolphin he got from Abigail's birthday party. This dolphin means a lot to him and he took it to bed with him tonight as well. Mattie was very excited about his trip to NY. I think he is looking for a change of pace. Of course going to Sloan tomorrow, doesn't start the change of pace off on the right note, but you get what I mean.

The car trip was uneventful for the most part. Mattie basically entertained himself and watched some movies, and I attempted to write an article for the mental health counseling association I work for. For most people this would probably be a very productive trip, four straight hours in a car! But not for me. Because I get motion sickness. So after an hour of working, I had to put the computer away and then get out of the car and get fresh air. A chilly 30 degrees in New Jersey will really wake you up and scare away what is ever ailing you. When I got back in the car, I decided to just stop working. The car trip itself was uneventful and seemed to go by fast, except the fact that our EZ pass to get through the tolls did not work. Of course trying to call the 1-800 number on a Sunday is a total joke. I got one recording after another. Very frustrating and they are going to have one very upset customer on the phone tomorrow.

Overall, we made it door to door in (as Pete says, who was driving) Three hours and 50 minutes, and we hit NO traffic. Totally unheard of, but we weren't complaining. As we drove into the city, and were approaching the Lincoln Tunnel this is the landscape we saw. We just couldn't get over it, the roads were empty and there wasn't even a line to get into the Lincoln Tunnel. The last time we drove to NY we waited one hour to get into the tunnel!

When we arrived at the hotel, a lovely bellman, Michael, came out to assist us. He even helped us take the wheelchair out of the car (the hotel is so close to Sloan Kettering, that the staff is accustomed to hosting cancer patients). As we were registering into the hotel, the front desk saw Mattie and asked Peter how Mattie was. When the manager heard about what we were going through she immediately upgraded our hotel room. So we are now staying in a two bedroom, two bathroom suite with a kitchen for the same price as our original room. We are very grateful to Noemi, the manager at Affinia Gardens and she even called us tonight to check in on us! A hotel with a heart! Mattie saw the room and he was very excited. The room has two balconies and he couldn't wait to go outside and see the views. Here is one of the pictures Peter took while outside with Mattie.

Mattie was pretty tired today after we checked into the hotel. He did not want to leave the room, so instead we called our friends and invited them over to the hotel. Goli and John (our former DC neighbors) came over and shared some wine, conversation, and a few games with Mattie. Mattie at one point got himself off the floor, and played his favorite game, where he puts on this scary face and chases you around the room. He calls it his "shrimp face." Why that name, well because it all began at the Japanese restaurant at the hospital after eating shrimp. The shrimp inspired him to chase Ann, and the rest is history. I snapped a picture of Shrimp Face in his NY room!

Mattie was ready to head to bed tonight at 9pm. Totally unheard of. So we helped him to bed, and performed a central line dressing change and then hooked him up to an IV. Just packing up medical supplies today for our trip was a riot. I even rigged up a way to hang an IV bag in a hotel room. I brought a wire hanger from home and Peter found a way to attach it to the sprinkler system in the room. All I know is.... it is working.

Mattie has an 8:30am appointment at Sloan Kettering tomorrow. It is unclear to me whether they are just doing blood work and an examination tomorrow, or all of this and an infusion of MTP. However, according to the protocol Mattie gets MTP twice a week, Tuesday and Thursday, so I am confused about tomorrow. Trust me, that confusion won't last long, but now I have a whole new and bigger system (Sloan!) to learn in just a few short days. Peter and I have our work cut out for us.

We had a nice time with John and Goli tonight, and we will see them tomorrow along with Karen in the evening after she gets off of work. Thanks for your good wishes for our trip and to all our DC friends, thank you for starting this trip off smoothly for us.

I end tonight's blog with an e-mail I received from our friend Julia (a fellow RCC mom). I told Julia I liked her e-mail a lot because it also acknowledges Peter's role in all of this. He does work full time (well, more like "all-the-time" as he regularly works 70+ hours a week), but his heart is always with us and he is a dedicated dad. I agree Julia, it would be easier for Peter to just check out. But like you point out this is not Peter. Julia wrote, "I love to read about your good days! Reading about your dinner together reminded me about when Dave and I sat with you (Pete) at an RCC auction a couple years ago. This was the auction where Dave got into a macho bidding war, and we "won" the Painting Room's art chest for a fairly 'outrageous' amount. Of course, it was for RCC, and Kate was thrilled to get it, and Pete said you had a similar winning the year before - planting pots and a birdbath?! Anyway, Pete was hilarious that night! Vicki, I think you were in Hawaii for a conference. Pete, I'm so impressed with how you continue to keep pace too. Not just going through the motions, but staying connected with Mattie and Vicki when it would make sense to just not. You and Vicki really are such a great couple of people. We're really glad to know you. Have a great trip to NY."