January 22, 2009

Thursday, January 22, 2009

Quote of the day:

"That some good can be derived from every event is a better proposition than that everything happens for the best, which it assuredly does not." ~ James K. Feibleman

Based on today's quote, Charlie wrote me the following. "Somehow this seems apt. You always seem to find something good in the situation no matter how bad it is. This is a great survival strategy and a wonderful life lesson for Mattie. As you discovered, we teach our children and create memories for them even when we think they are not paying attention. So it is with this and although often Mattie doesn't seem to "get" what you are doing for him, in retrospect he will and he will remember the lesson of fight for what's important, love with everything you have and celebrate life to the best of your ability."

Wednesday night was eventful, but not because of Mattie. Mattie had sedation wednesday afternoon and therefore he took a long nap, so he wasn't able to go to bed until 2:30am. So I stayed up with him. For the most part the PICU was quiet, until 1am. At 1am, a could hear that the room next door to us was being cleaned and furniture was being moved so that the hospital could prepare for a patient to occupy the room. Okay that sound was bad enough, but what followed next I am still processing. At around 1:45am, I could hear a family coming in. The mother was hysterical. She was crying and was uncontrollable. She was in the hallway and then in her child's room, but I could hear her quite well regardless of where she was. I actually found her crying and the intensity of it intimidating, mostly because I too live in a precarious position with Mattie. However, her crying never got better. I am not sure why Mattie did not ask me about this, but he was focused on his movie (thankfully!) and I kept turning up the volume of our sound machine. I am just thankful that this crying did not disturb him. I tried not to look bothered by what I was hearing, and therefore, I think this made a difference for him. We are used to hearing crying in the PICU because of pain and the other issues around us, but last night's crying was a type of crying I have yet to hear before in this unit. When I woke up this morning to take a shower, I did not hear any noise next door. Because our room shares a shower with that room, I figured I would be hearing something while in the shower. But I heard nothing. Later in the morning when I went out in the hallway, I noticed that there was no one in that room next to us. Being optimistic, I figured that either the family was discharged or maybe they were moved. When I asked Tracey, our night nurse, about this tonight, she told me she couldn't comment. Which reading between the lines means the child died last night. I think illness is hard enough to come to terms with when you are in a pediatric unit, but now we are also dealing with death. I think what I found particularly disturbing about last night, is I felt like I was intruding (though certainly not intentionally) on this family's private time to deal with this shock. So in essence Peter and I don't only have to live with the smells and daily nuances of cancer, but we also have to face the reality of death. Not an easy topic to address in our society in general, but most definitely a very sensitive issue for us based on Mattie's situation.

Mattie woke up in a happy mood today. Meg (Linda's intern) came in to visit him, along with Sally the story lady. Mattie showed these ladies the quicksand he made out of cornstarch and his other science experiments. Sally came dressed today in jungle/hunting attire, in order to set the mood for her two stories about bears. One of the stories was entitled, "Going on a bear hunt." The ironic part is Mattie remembered this story from his days in the pretend room at RCC. Mattie even remembered the song that accompanied the story line. It was wonderful that Mattie allowed Sally into his room today, because he has literally thrown her out of the room for the past two months. Today he was animated and truly enjoyed the stories and his time with Sally and Meg. Sally even shared her story about how she came face to face with a bear when she visited Glacier National Park. Mattie was fascinated by this story and then created his own story about how he too had seen a bear's house (which was just a story of course!).

Later in the day, Ann came to visit Mattie. Ann came with a basket full of tricks and ALL sorts of foods to eat. Mattie did devour a donut (so that one donut a day principle is still in effect), but refused to eat anything else. Mattie and Ann did some wonderful projects together such as creating a spongy octopus, watching crystals grow, and playing with parachutes attached to little action figures. Mattie even showed Ann and I how his new money magic trick works. Through all the play that Ann does with Mattie, she tries to get him to move his arms and legs, so there is a definite strategy underlying the play which I am not sure Mattie is aware of. He had a great time playing and when I came back in the room Mattie was animated. Ann gave me time today to have lunch outside of the room. I really appreciated the wonderful lunch and pastries, and time away. These moments are true gifts. Ann also dropped off a gift for me from a former student. Thank you Pam for the beautiful sweater/scarf. I will be able to use this a lot during these cold days. Thank you also for the pumpkin breads and lovely angel. That was so thoughtful of you to think of us.

While Ann was visiting us, we also had a visit from Joy. Joy is a friend and former RCC mom as well. Joy brought us a wonderful dinner tonight. One of the dishes was pasta with olives, since clearly our readers know I am an olive fan, you can imagine how much I enjoyed that. Thank you Joy for the wonderful gifts you brought Mattie. In particular, Joy brought us two beautiful pieces of art. One piece was for a mother of a boy and the other piece was a gift for a nurse. The one I kept literally said, "....there's a special place in heaven for the mother of boys." Indeed! The other art piece Joy said we should give to a favorite nurse. So tonight we gave this piece to Tricia. Tricia has been one of the nurses who just rises to the occasion, and has been with me every step of the way with Mattie's treatment. She has advocated for us with doctors on many occasions and has a wonderful rapport with Mattie. I couldn't think of a more deserving person for this lovely gift. Tricia was so touched by this gift she cried. Joy, what a fabulous idea! Thank you for bringing this to me today. I will treasure the piece about mother's of sons.

After Ann and Joy left, Mattie was headed to the x-ray room to have x-rays done of all four of his operated parts. Linda and Meg came with me, which helped tremendously. Linda's support is truly valued, during all these difficult moments. Mattie started off the x-rays doing well, but by the mid point, he was getting impatient and also was developing pain from being asked to hold a certain position with one of his operated parts. Mattie's leg is very sensitive today after Dr. Bob worked on Mattie's knee yesterday. So Mattie is hyper sensitive. When I spoke with the x-ray tech she told me the order said that she needed to x-ray Mattie's left leg. I then asked why? Nothing is wrong with Mattie's left leg, it is the right leg that needs to be x-rayed. So Linda jumped into action, but it was hard to get the residents to address this ordering issue. So right in the middle of the x-ray room, I halted the process and paged Dr. Bob. Okay, do you want to hear a funny story? Well we have at least three Bob's in our life right now. Bob Henshaw, Bob Glennon, and Bob Weiman. The number I first called wasn't Dr. Bob, but I did not know this! I pressed the wrong Bob by mistake. So for the first two minutes of my conversation on the phone I am asking a Bob about x-rays and what I should do, but it wasn't Dr. Bob I was talking to, I was talking to Bob Weiman (Mattie's head of school). It really was too funny and Bob W. was such a good sport about this! It just had to make me laugh. This is how disoriented I was. I finally paged the correct Bob. Bob called me back within minutes and he agreed the order was written incorrectly by a resident. I felt the need to check with Bob because he may have had a plausible explanation for x-raying the other leg that I may not have been privy to. So we did get the correct parts scanned today, thankfully! But x-raying was painful, and Mattie landed up hysterical by the time the process was done.

After the x-rays, Mattie came back to his room, and Linda invited him into the playroom. While I was cleaning up Mattie's room, I wasn't aware of the fact that Mattie had all his girlfriends with him. Mattie was designing a beautiful eagle model with Linda, Jenny, and Jessie. They brought Mattie back to the room and showed me the model. Mattie is quite proud of his artistic endeavors, that he asked all his "ladies" to stand with his art work, so he could take a picture of us! Here is the picture he captured!

Pictured clockwise: Vicki, Anna (Mattie's PT), Linda, Jessie, and Jenny! In the picture are all of Mattie's wooden models that he has created this week such as a shark, a peacock, an the eagle.

Jenny and Jessie were telling me that they could see Mattie was visibly upset when he came back from the x-rays today, but that he pulled out of it quickly. He was happy to work on a project. Jenny told me that while creating the eagle, Mattie was trying to stick a pipe into the base holding up the eagle. He was having a hard time getting it to go through the material. He then said he wished he had an x-ray machine so he could see what was actually inside the base that the eagle was attached to. Jenny and Jessie felt that was a profound comment, because first Mattie understood what an x-ray machine actually does, and second despite being upset about the x-ray machine and what he just experienced today, he moved passed that to understand how it could be used in his daily life.

I had the opportunity to talk with Jenny and Jessie today about a project I would like to work on. My former student, Pam, sent Mattie a card in the mail this week. When we opened the card today, I happened to glance at the postage stamp. I do that often, since I find it interesting to see what stamps people select and place on a card. Stamps to me are like mini pieces of art, and by picking a certain stamp, to me it says something about the person sending the card. In any case, Pam, created her own personalized postage stamp. I was intrigued by this, and my wheels started turning. I want to create an osteosarcoma stamp. I realize this may not be a US stamp recognized by the US postmaster general per se, but why not create our own stamp through stamps.com to publicize this horrific disease? I asked Jessie and Jenny to work with me on this since they are both artistically strong! I am excited by the possibilities of this idea and I think they are too.

Anna had a very successful physical therapy session with Mattie. Junko's air balloons that she gave Mattie yesterday played a big role in the therapy session. Mattie had Linda inflating balloons in the hallway, and he had to use his arms to send the balloons crashing into us. In addition, he walked to a few balloons that fell on the floor to pick them up. This session lasted for over an hour. During that time Anna helped stretch out Mattie's leg, and got him to do some exercises in a very creative manner. Anna and I consulted this afternoon with Dr. Bob in order to get his approval to try to use some walking devises tomorrow that will help brace his arms so he can focus on his legs. So he has another big PT day tomorrow.

Mattie received a lot of wonderful mail this week. We want to thank Brian Boru (our feline friend) for all the wonderful creepy crawling creatures made of our rubber. Mattie loves them!We want to thank my former student, Mary for the wonderful card and gift card to Target that she sent Mattie. Target is one of Mattie's favorite stores to visit. We also want to thank Susan DeLaurentis (Mattie's Director of School Counseling at SSSAS) for the fun musical cards she sent to both Mattie and I. Mattie's card had coachroaches on the front, so you can imagine what kind of hit this was. My card played a Dionne Warwick song, which I absolutely loved. Thanks Susan.

As I finish writing this blog tonight, Mattie has just completed his second dosage of MTP-PE for the week. So far he is holding his own, but he is very tired and ranges from being awake to completely sleeping tonight. It is our hope that we will be discharged from the hospital tomorrow. Mattie's methotrexate level today was .23. Quite close to .10. I imagine we will go home in the afternoon tomorrow, since Mattie has PT in the morning and the discharge process takes a while. As I sign off for the evening, I have a full evening of packing up Mattie's room ahead of me. I have to pack tonight and load things into Peter's car, so that all I have to worry about tomorrow when Peter is at work are Mattie, the wheelchair, and a light bag or two.