Friday, October 3, 2008

Friday, October 3, 2008 - The MRI did not happen today!

Mattie was scheduled to take a two hour MRI at Georgetown Hospital today. If you have ever spent more than 10 minutes in a MRI machine, then you can appreciate why Mattie needs to be sedated for a two hour long scan. I was briefed by two nurses yesterday on the phone about what Mattie could and couldn't eat and drink before the MRI today. They made it very clear to me, and since I have done scans many times in the past with Mattie none of these instructions were novel or unusual to me. However, there was a big difference today! Mattie is seven weeks into his diagnosis, he at times is at his breaking point with going to hospitals, and he gets scared. He woke up in one of those moods today. Any parent can relate to this, there are just some days your children wake up and you think to yourself, wow this is going to be a LONG day! In any case, Mattie was sad, upset, and unhappy about the prospect of going to the hospital today for a scan. He kept insisting that he was hungry, that he wasn't going to make it, and was simply hysterical. So against my better judgment (and of course judgment at times goes out the window, when you see your child frightened and upset), I gave Mattie a teaspoon full of yogurt to meet his hunger demand. Mind you I first tried all the other "approved" things he could of had, like water, jello, and popiscles. But he refused all of them, and he just persisted to work himself up into a fit.

We arrived at the hospital around 10am, and tried to register Mattie for the MRI. I went to the usual day registration area, like I have done in the past. However, today, the staff there told me I did not have to register there but just head to the MRI area (I was suspicious, but I went along with the process). So now I move my parents and Mattie from one location in the hospital to another. I get to the MRI area, and the staff there tells me, NO I am in the wrong place again, and I have to go to the Day Surgery registration area. So now I move to the third location. At Day Surgery registration, they tell me, NO I am still in the wrong location, and they send me back to the first place I tried, which was day registration. At this point I was livid. It took me over an hour to do all of this, and I had to schlep Mattie around from place to place. But you have to understand Mattie was frightened and upset to be at the hospital to begin with, so moving from location to location did not help the process. By sheer accident, I ran into Gail, our patient advocacy liaison. I told her I wanted to talk with her, and she met up with me about an hour later, and I told her about my registration fiasco as well as my unsettling experience with Mattie's platelet transfusion. Gail immediately went into action, so much so, that I had a meeting with the director of the Georgetown bloodbank later in the day.

Our saving grace today was Linda. Linda met me down in the Day Surgery area, and rescued us from hanging out there. She helped us back to the MRI waiting area and played with Mattie until his scan time. We got Mattie changed for the scan and they even started the sedation process. It was at that point, one of the doctors asked me what Mattie had to eat this morning. I was honest and told her about the yogurt. It was at that point that the doctor said Mattie couldn't have the procedure until 6 hours after he ate the yogurt. The MRI machine was booked up back to back today, so therefore his scan had to be cancelled. As if I did not feel bad enough about this, I felt that the doctor made me feel inept as a parent, and not only inept, but a parent who doesn't establish boundaries and limitations for my child. Of course, it is possible I read into this, but that is how she made me feel. Like the week hasn't been hard enough, I now needed another guilt trip. I left the MRI area feeling awful, because I knew this scan was important for Mattie to have. I called Peter and he immediately talked me through how I was feeling. Peter totally understood why I gave into Mattie's demands for yogurt today, and he told me we can always do another scan. Peter is very protective of me too, and I think if he were present today, he would have given this doctor a piece of his mind.

After this experience, we headed to the Lombardi clinic, because Mattie needed his blood checked to prepare him for his monday chemo admission. While we were at the clinic Mattie met up with his buddy, Jenny. Jenny normalized the MRI experience for me, and started playing with Mattie. Mattie even ate half a sandwich in the clinic. There is something about Jenny's presence and the inspiration to eat. Meanwhile, Dr. Toretsky came in to see us. This wasn't a planned visit, but he knew we were in the clinic doing blood work, and he had also read our blog and wanted to follow up with me. I am not sure how long I spoke with Dr. Toretsky today (it wasn't a short period of time, nor was he watching the clock like many others do), but he basically listened to every one of my concerns and helped me understand and put what I learned at Sloan Kettering into perspective. For me it has been a very sad week, and at times today I listened and cried, but Dr. Toretsky was able to walk this path with me. He holds out for what we all want, a cure for Mattie, and the only way possible to give him this opportunity is to have surgery on all four tumor locations. In many respects, Dr. Toretsky had a very hard job today. He had to find the way to instill hope back into me, and to pick up the shattered pieces and aftermath of our Sloan trip. One thing is for certain, I feel that Dr. Toretsky and I are on the same wavelength and he welcomes my feedback and concerns. But I feel tired, and just plain weepy this week.

After our visit to the clinic, my parents and I took Mattie out to lunch at a restaurant in DC, that has a working train that runs around a track on the ceiling. Mind you lunch for us was around 4:30pm, and we were all starved. Mattie started lunch grumpy, but perked up and I was able to feed him 3/4 of a pizza while he was busy working in his highlight's hidden picture book (thanks Margaret!). Fortunately my parents were with me, because if not, I most likely would have gone home and not eaten.

Mattie had a lovely visit this evening from JJ. It was a great reunion and JP (our neighbor and JJ's owner) brought Mattie back some very special gifts from his trip to Spain, where he visited his mom. JP brought Mattie a wonderful Don Quixote t-shirt. This Cervantes character is wonderfully symbolic of the tenacity of idealism that we need to hold onto during these difficult times. Another special gift JP bestowed on Mattie was an official Real Madrid soccer uniform! This was very "cool" as Mattie puts it. Thank you JP for thinking of us while in Spain!

I received two lovely e-mails that I wanted to share with you today. One came from Ashley, who is a RCC mom and Sam, her son, is one of Mattie's buddies. Ashley wrote, "Sam had a yogurt the other day that had one of those pink tops--the ones you collect and send off to help raise money for breast cancer. He asked about the top and I explained that if you collect the lids (we've done this in the past), send them in, the yogurt company will raise money for cancer. Sam said, "can we do this for Mattie Brown?" I thought that was very touching. Thank you Sam.

The second e-mail came from my college roommate and friend, Leslie. Leslie worte, "Last week Faye and I were doing her Hebrew School homework and reading about Rosh Hashanah (Jewish New Year). It said: "Rosh Hashanah is a day of hope. We hope for good things in the year to come...Whatever people hope for, they can tell their hopes to God." As soon as I read that statement I immediately thought of you, Pete, and Mattie. In the Greenberg household our hope for this New Year is for Mattie to beat this cancer. Leslie, I am hoping God is hearing our prayers. Thank you!

We want to thank the Peterson family for a wonderful dinner tonight. I love pumpkin soup and it makes me feel better. Also, how on earth did you know we LOVE apple pie? Your homemade pie is a total treat, and the fact that you made it from handpicked apples from an orchard is very special. Thanks for being so thoughtful.

On the electronic front, thank you Kim, Lorraine, Susan, and Karen for your great e-cards and Jackie for your wonderful seal video! We are hoping to have a peaceful weekend before we head back into the hospital on monday for the next round of Methotrexate.