Tuesday, September 30, 2008

Tuesday, September 30, 2008

We had a slow start to the morning. Mattie did not wake up until 10:15am. Then we started to pack and get ready for the journey ahead. Packing for a child is complicated enough, but when the child also has cancer, the complexity of the packing job goes up by a factor of 10. I was worn out just figuring out what medications I had to take with me, and which ones needed to be transported in a cooler. But by 1:30pm, we were finally out the door, and to some extent we were excited just to be leaving DC. But as we were driving on the NJ Turnpike, Peter got a call on his cell phone. It was Dr. Myers checking in and asking how Mattie was feeling. At first, I thought, how lovely, the doctor is calling because he is concerned about Mattie and his well being. But when Dr. Myers asked Peter for the third time how Mattie was feeling and where we were, Peter said, "why are you asking me all these questions?" Well in a nutshell, you may recall that Mattie had an allergic reaction to the platelet transfusion yesterday. It turns out that the Georgetown blood lab and the American Red Cross determined that the platelets that were given to Mattie were tainted with a bacteria. So Dr. Myers wanted us to check into Sloan as soon as we got to NY to get a bacterial culture of Mattie's blood, as well as IV antibiotics. Since most of you have been following this journey with us, you can imagine how disillusioned Peter and I feel right now. Mattie immediately said, we are on a road trip, we are NOT going to the hospital tonight. Peter and I range in reactions from being mad, angry, and sad. As I expressed in prior blogs, I do not like blood/platelet transfusions, and this is exactly why I don't like them! Nothing is 100% safe with a blood transfusion. Mattie is sick enough, and why expose him to these other outside threats?! But as I said to the resident yesterday who came in to ask for my informed consent for the platelet transfusion.... What other choice do I have?!

In between our complete anger over all of this, we had moments of laughter in the car. Peter drives like a typical Bostonian, or NY cab driver. Being in NYC, only highlights his abilities. So he was flying over potholes, and my mom, Mattie, and I were in the back screaming and laughing at the same time. To top it off, the music we were playing in the background was the perfect backdrop for our city driving experience. I am happy to report that we are in NYC in one piece, but I am writing this from the Urgent Care Center at Sloan Kettering. I realize we are not in Kansas anymore. Peter and I drove up to the hospital, and we couldn't even figure out where to park. So we landed up at NY Presbyterian Hospital's parking area. Mattie was examined, and his vitals are fine. He had his blood drawn, and his counts look good except for low magnesium and potatsium. Mattie is currently getting an infusion of antibiotics. So apparently fun and a break are not in our future!

Before we left our home today, Mattie had the joy of opening some packages he received in the mail. The first package was from the Gelhoff's. Matt Gelhoff is Mattie's music teacher, and his family sent Mattie some wonderful Scooby Doo stickers (which will be added to the haunted house he is building at the hospital), and a fantastic Scooby Doo 3-D board game (which looks like a lot of fun!). However, the real treat in this package, was a special music CD Mr. G made just for Mattie. The first CD had Mr. G narrating what Mattie was about to hear. Mr. G's voice sounded so professional, like someone you would hear over the radio. It was a fabulous introduction to the music we were about to hear. We listened to this special CD through the entire car trip up. It was a wonderful variety of music and Mattie really enjoyed this special gift. The second package Mattie opened was from Cohort 12 at the GW Alexandria Campus. These are a special group of students, and they really spoiled us with gift cards from Dunkin Donuts, Target, and massages. Mattie also loved the paint and floam. What can you say about such a giving, caring, and thoughtful group of students (who have recently graduated)? Other than I am proud of all of you and I know you will be great counselors. Your gift means a great deal to all of us, and thank you for giving us an opportunity to have such a special treat. The third package we opened was actually for me. Thank you Ellen for the wonderful shoes. They will be coming with me to the hospital. I love them.


On the electronic front, thank you Charlotte, Kim, Karen, and Susan for the wonderful e-cards and videos, and Jacky and Grammie for the great e-mails. I sign off for tonight, and reflect at an amazing six year old, who sat through over a four hour car trip patiently, and then instead of being able to have fun tonight, is back in a hospital this evening. He isn't pouting or acting sad (like I would be doing!), he is building legos and chatting with the doctors and nurses. An amazing fellow indeed!