Friday, March 6, 2009

Friday, March 6, 2009

Quote of the day: “In times of great stress or adversity, it's always best to keep busy, to plow your anger and your energy into something positive." ~ Lee Iacocca

Peter took over last night because I was just too tired and my migraine headache prevented me from waking up multiple times. I could hear Peter, Mattie, and Ellen (our wonderful HEM/ONC nurse) moving around last night, but there was no way I could respond. So Peter was up and down many hours throughout the night with Mattie. Mattie tolerated the chemo very well, and woke up this morning feeling fine. Fortunately!

When Mattie woke up today his initial thoughts were of the playroom. He wanted to know if he could go to the playroom and he wanted to find Linda. I knew Linda was going to have her hands full because she was hosting a ribbon cutting ceremony for the playroom, so I went out to assess the situation to level set Mattie's expectations. The playroom was closed this morning for good reason, because the room was being prepared for the big event. Fortunately Linda sent volunteers to Mattie's room all morning to come help entertain him. Mattie began the morning with Tony, a volunteer. They did a 300 piece puzzle together that I brought from home. They were quiet together, but none the less worked well with each other. While Tony was in the room, Laura, one of Linda's interns, came down to work with both Mattie and Tony. At which point I bounced back and forth to do laundry. I think I have done more laundry this year than in my entire lifetime. When I got back to the room, Kathleen, Mattie's nurse, was in there with them. Kathleen and Mattie get along beautifully. Kathleen knows how to hold her own with Mattie, how to appropriately joke around and encourage him. Kathleen is an excellent and competent nurse, and today I had a chance to see her fun loving side. I think you should also know that Kathleen attended the music fundraising event that Tyler Gehr's and other SSSAS high schoolers hosted in Alexandria. Kathleen certainly did not have to go, but I think her actions speak volumes about her commitment to Mattie.

After Mattie put the 300 piece puzzle together, he then decided to act like a tornado and destroy and break apart the puzzle. His hands were the tornado. Apparently Kathleen and I were asked to pretend to live within the puzzle, and Mattie was looking for a reaction from us as our homes were getting blown away by his tornado hands. Kathleen was hamming it up and Mattie was loving it! I snapped two pictures of Mattie and Kathleen together!

Left: This picture of Mattie and Kathleen was taken outside the playroom right before the ribbon cutting ceremony. Kathleen understood that Mattie was very excited about cutting the ribbon, and she wanted to support Mattie and therefore came to watch the event!

Right: Kathleen and Mattie playing a tornado game with all his puzzle pieces!

Mattie played with two other volunteers today, and he started designing another cardboard box structure. He won't tell me what it is yet, but he was chatting up a storm. In between all these activities, Liza May came to visit us. Liza is an upper school mom at SSSAS and now a friend. Liza brought me a wonderful lunch which was comprised of homemade zucchini soup and a wonderful salad. Liza, please consider adding your soup recipes to Mattie's cookbook. Liza also packed a very creative lunch for Mattie. She included all sorts of snacks, spiderman mac and cheese (with a spiderman activity book and stickers), and homemade pumpkin muffins. The muffins were a major hit. Mattie is back on a pumpkin kick! Thank you Liza for supporting us today, and sharing your cooking skills with us.

Mattie was literally counting down the minutes until he could go to the playroom for the ribbon cutting ceremony. Kathleen was teaching Mattie how to tell time and track the time himself until the event. Mattie understood the concept of a ribbon cutting ceremony because he participated in such a ceremony last year at SSSAS. The kindergarten classes created a garden at the school, and there was a special ceremony to acknowledge this contribution. On an aside, I always regret that I never got to see this garden. Mattie always wanted to show it to me, but one thing led to another and I never got to see it. Funny isn't it? I wouldn't be making this mistake now if given such an opportunity. The things you have to learn! Any case, Meg, Linda's intern, came to Mattie's room today and helped us to the playroom. Mattie waited by the door with anticipation. I snapped some pictures of the whole event. To Mattie this was a big deal. Though the playroom is Linda's baby and creation, Mattie takes a lot of pride in the playroom. Linda did a beautiful job hosting the event, and it ran smoothly and was very festive. For those of you who haven't met Linda, you probably can get the feeling for who she is from reading this blog. She is an amazing lady and we are so grateful to have her in our life.

Left: I thought this picture was very sweet. Mattie and his buddy, Linda were having a chat minutes before the ribbon cutting ceremony. You need to understand that Linda was running this event, and despite having a thousand things to do, she made the time to chat with Mattie and make him feel special.

Right: Mattie with Linda, several hospital administrators, the president of the Starlight Foundation for the MidAtlantic region, and a representative from Toys R Us (the two co-sponsors of the playroom).

Left: Mattie had the opportunity to meet Geoffrey, the Toys R Us mascot. They gave each other a high five!

Right: Linda snapped a picture of Mattie and I at the party, we were right in front of the fantastic cake. The cake had NO chocolate in it. Mattie was thrilled!

As the party was taking place, Peter arrived. Peter came to the hospital today, because he and I made an appointment to speak with Julie Andrews. Julie is a Vice President at Georgetown and the head of patient advocacy. We wanted to go on the record with some of our concerns. It was a very productive meeting and Julie assured us if we write a letter to Dr. Draso (the CEO at Georgetown Hospital), that she will personally make sure the CEO receives it and will strongly encourage the CEO to respond to it. So Peter and I are compelled to write a passionate and well documented letter. This could all be for naught, but we feel that the HEM/ONC practice at Georgetown deserves the opportunity to be represented from the side of the consumer.

When Peter and I arrived back at the PICU, Mattie had just finished playing with Linda and had moved onto physical therapy with Anna. Anna got Mattie up and walking. Meg, Linda's intern, was instrumental today in the therapy session. Basically Mattie and Meg decided to have a race around the floor. Not just once, but TWICE. This is a ton of walking for Mattie, but he was motivated. Linda was the race commentator, I was the person who sat at the start and finish line to blow the horn indicating the start and finish of the race. It was a riot to watch this. Meg really got into her role, and she pretended several times to be caught in quick sand, so that Mattie would be the natural winner of each race. Which only motivated him to do a second lap! Excellent. Peter and Denise, Mattie's social worker, also got involved! I tried to capture the excitement of the walking session on camera.

Left: Mattie and Meg at the starting line of the race. They were both determined that they could beat one another.

Right: The whole racing gang! From left to right, is Anna, Peter in the background, Denise, Meg, Mattie and Linda

After Mattie's exciting physical therapy session, we headed back to his room and he had a special visitor. Susan DeLaurentis, the director of school counseling at SSSAS, came to visit Mattie. She brought a wonderfully creative card from Ms. Flanigan's first grade classroom. It was a card with different bugs on it. A card right up Mattie's alley. The bug card now is posted on Mattie's hospital door. I took a picture of it for you to enjoy how special it is for a bug lover.

In addition, Susan brought a wonderful book from SSSAS' book fair. It is a book about bugs. Mattie was able to identify many of the bugs on the card that matched bugs in the book! Susan also brought a wonderful highlights activity book, which Mattie jumped into and started completing. Mattie also loves the travel size Hoppers game. Mattie recently received the Hoppers game from a friend, and he loves it. He can play it independently and having the travel size version will be great to take to the hospital. Thank you Susan for all the great gifts. You know what is up Mattie's alley. I also appreciate the visit and support.

We want to thank Beth Engiles for the wonderful home cooked dinner. We loved your crabcakes and shrimp, and the aspargus was a special treat! Mattie loved your pumpkin bread as well! Thank you Beth for your continued support and for your visit tonight.

As I write this blog I am home tonight. Though I know Peter is very tired too, I can't function at this point. I need rest and I need sleep in order to get rid of this migraine headache. As the days continue on I realize I am getting weaker and without a break, I can't continue at this pace. I am sure Peter is not far behind. I am hoping a day away will give me the energy I need to continue on because this is a fight of a lifetime not just for a year. Mattie will get his second dosage of doxorubicin and cisplatin tonight. It is my hope that he will tolerate it well. The plan is that he will have 24 hours of post-chemo hydration on saturday and then be allowed home on sunday. Of course, by tuesday or wednesday I am being prepared for Mattie to become neutropenic. I am not sure Peter and I can handle another 11 days of a neutropenia admission. One thing is for certain, Mattie is coming back like gang busters, and Peter and I are dwindling. It is hard to manage his HIGH energy, and I think without being able to physically expend his energy, it is bouncing out of him in so many other directions.

I end tonight's blog with a message I received from my friend, Charlie. Charlie wrote,"If anyone is an example of turning frustration into something positive it is you. The medical community as a whole needs a real wake up call for their part in keeping patients from getting well. Many physicians don't realize that their staff is a reflection of themselves; we judge them by how the people they hired treat us. I am truly sorry for what you experienced with your doctor's staff yesterday, as you said there is a wide divide between hearing someone and truly listening. The former is done with the ears and the latter with the heart. When someone who is supposed to be listening refuses to acknowledge what you are saying it is incredibly aggravating. Add pain into the mix and it can get explosive. I am glad you finally got to the doctor and were able to make yourself heard. I am amazed that the situation with admissions to Georgetown are still a problem. Unfortunately, you have run into a not so positive side of human nature; when no one is pushing, things tend to return to the status quo because that takes less thought and effort on the part of the person who is directing. I hope that since your patient advocate saw what was going on your next admission will be smoother. It is absurd to fill out the same forms over and over again within a very short period of time. I hope that some of the barriers to good patient care you have identified to the hospital administration are resolved and that better solutions take root in a lasting way."