Thursday, October 9, 2008

Thursday, October 9, 2008

Mattie had a late rising this morning. Which was just as well since he was not allowed to eat or drink ANYTHING after 9am in order to prepare for his two hour long MRI. Ann came in this morning to sit with Mattie for a while. This was a much needed break, since I was dragging and feeling ill. I have developed a cold, sore throat, and am just feeling tired. Ann came in this morning filled with all sorts of goodies. Ranging from vanilla frosted donuts, munchins, to bags of toys and cards. When Mattie woke up, Ann took Mattie for a walk around the floor and they landed up together in the childlife playroom. They were sitting with Lesley and Whitney and were making friends with some other kids in the room. I have had the wonderful opportunity to meet some lovely families while in the childlife room. But frankly to me, today was a big old blur. Maybe it is because my head is full of fluid, or because it was a day where we had to work hard to entertain Mattie so he wouldn't focus upon the fact that he was hungry. Thank you Ann for the hot tea!

On a funny note, Jenny and I have a running joke. There is NO amount of signage I can put on Mattie's door to prevent people from entering when we are resting. While Ann was with Mattie today in the childlife room, I attempted (emphasis on ATTEMPTED) to lie down and rest my head. I had Jenny's 'do not disturb' sign on our door. Do you want to take a guess as to how many people entered the room even though the sign was very visible? If you guessed four, give yourself a gold star. The first person to enter was the cleaning person, who decided to empty all my trash and bang around cans, while she could see I was trying to sleep under the covers. Now I could have started yelling, but then I wouldn't get my trashed picked up for the rest of the day. So I let it go. But after the fourth interruption, I gave up! I headed back to the childlife playroom, and Lesley literally decided to create an octagon shaped stop sign in red that she attached to Jenny's sign and put it on Mattie's door. When Jenny and I were headed back to the room and we were in the hallway, we could observe someone at Mattie's door. This fellow proceeded to knock on the door and walk in. With that Jenny surveyed him and asked him if he saw the STOP sign, and whether he thought the sign did not apply to him. You had to be there to truly get the humor to this whole scene. To me it is a study in human behavior. No one reads signs, we sometimes work on instinct.

This brings me to the next point. Scheduling a six year old for scans in the afternoon is like sheer punishment, especially when we have finally turned a corner and Mattie is willing to eat. Holding Mattie back from eating food until his MRI at 1:45pm was hard. Thankfully though Mattie had great distractions such as Ann, Jenny, Linda, Whitney and Lesley. In addition, Susan, the story lady, came in today and acted out a story she wrote herself. Mattie played the prince. My mom played the queen, and I was the Witch in the story. Very fitting based on my mood! Mattie then headed back to his room, and got ready for his MRI. Linda came down with us to the MRI procedure, since Mattie needs as much distractions as possible, since he gets scared when he sees the intimidating MRI machine. Linda was great, and her whole childlife team tried super hard today to make sure they knew how Mattie was doing throughout the two hour long procedure. Lesley (one of Linda's interns) met Mattie after the MRI was over and was with him as he was wheeled back to the PICU. However, some of you may recall my harrowing three hour nightmare on tuesday when Mattie was recovering from being sedated from a PET scan. Well today went much smoother, because he was given Versed to help him transition out of his propofol sedation. It was a night and day difference. He still was crying and groggy for about 90 minutes, but he wasn't agitated and hysterical.

When Mattie finally recovered from sedation he was ready to eat. However, there was no food for Mattie. I am not sure what is going on with the hospital kitchen, but Mattie received NO food yesterday and then did not get a dinner tonight. Rest assured that won't be happening again, since I raised such an issue over this, I had the head of the kitchen come and visit and apologize to me tonight and he brought Mattie a beautiful dinner. I think it is unfortunate that it has to come down to this, that you really need to constantly advocate and speak up on behalf of the patient. Lord knows what happens to those not being represented. Mattie had his heart set on spaghetti with tomato sauce for dinner. He wished for this the whole day. So I called Peter and I told him he couldn't come to the hospital tonight without the pasta. Peter was a major hero this evening! Mattie ate like a champ, and at 10:30pm, he is still eating.

So as we head into friday, we are awaiting Mattie's methotrexate level to continue to fall. It is .27 now, and it has to be .1 or lower to leave the hospital. Friday holds another two hour MRI at 1pm. So it will be a long day for Mattie and part of me has been so wrapped up at getting Mattie through the scans, that I haven't prepared for what the scans are actually going to be showing. I suppose we will deal with that on friday or monday as it comes.

Ann collected several gifts from other families today and brought them to the hospital. I want to thank the Doane family for their lovely Scooby Doo video collection. This is a big hit tonight. Mattie loves his cute pumpkin (things are looking like Halloween in Mattie's room!) and car stickers as well. We want to thank Susan Cooper for her amazingly generous check to the Mattie fund and for her sending along two books she authored and signed for Mattie. We would also like to thank the Singh Family at RCC for their contribution to the Mattie fund. It is amazing how we are all connected through RCC, even if we do not directly know each other. Ann also told me that Siobhan Starrs hosted another successful bake sale at last weekend's soccer game. Thank you Siobhan for helping and supporting Mattie.

On the electronic front, we would like to thank Coach Dave and Carey C. (she lives in PA, and her daughter has osteosarcoma too, and has located us through the blog) for your wonderful e-mails and Kim and Karen for your e-cards. We thank the Brandt family for a delicious dinner and for thinking of us. Mattie really appreciated the shake. He has asked for one all day. I guess we are back into drinking shakes.

I end tonight on a musical note. Each week, the hospital has two volunteers (Jerry and Nancy) who go room to room with a keyboard and entertain those in their rooms. The hospital has many volunteers who come by during the week, but our favorite volunteers are by far Jerry and Nancy. The last time they came we played name that tune with old movies and musicals (this occurred during our first week of chemo, and just when I thought our world was ending at that point, they lightened our spirits and restored our hope). Tonight we played name that tune to TV show theme songs. Peter and I held our own, even with shows back in the 40s and 50s. Toward the end, Mattie also played name that tune, and got all 5 songs correct! Jerry and Nancy lightened up our night, and somehow when they play music we all forget our problems. What therapy, and we don't even have to pay for it. They are just delightful and generous spirits. They stayed with us for about 90 minutes. Thanks for the fun, it is a nice way to end our day!