Sunday, November 16, 2008

Sunday, November 16, 2008

Charlie, thank you for the message of the day! Charlie wrote, "to me this describes you perfectly in your battle for Mattie and his right to live a life free of this disease."
The bravest battle that ever was fought; Shall I tell you where and when? On the maps of the world you will find it not; It was fought by the mothers of men!”

Mattie had a good night of sleep on saturday. Peter and I could tell that by 6:30pm on saturday, Mattie was taking a positive turn in the pain department. His vitals were looking better too. The goal was to get Mattie off of the every two hour demand for more fentanol, which is a narcotic and has its own nasty and addictive side effects. Mattie yesterday switched over to using tylenol. Not his drug of choice, but when no other option is presented, it is amazing how good tylenol looks. Mattie did awake this morning at 5:15am, and Peter and I had a mini battle with Mattie about pain medication. He demanded more fentanol, but we told him he could make a choice, either it was tylenol or nothing else. Of course we also explained why we couldn't give him more fentanol, and that it wasn't good for his body or his recovery time. That message did sink in! So Mattie eventually made the right choice, and he took tylenol and then went back to sleep and slept soundly.

Mattie had a visit today from Margaret, his first preschool teacher from RCC. Margaret came bearing all sorts of treats. Beautiful cookies with wonderful designs on them. Mattie selected a heart shaped sugar cookie and ate the whole cookie. We want to thank Margaret for the coffee and tea and the tasty snacks for us as well. I ate a pastry that was in the shape of a horse shoe that was delicious! We had a nice visit with Margaret, and I reflected that it is ironic, that we are back together once again working on meeting Mattie's needs both educationally and developmentally. Margaret met our family during a crucial point in Mattie's history and it is very meaningful that once again she is rising to the occasion to help us again. Thank you Margaret for the floam and the highlights hidden pictures (one of Mattie's favorites!).

After Margaret's visit, we had a visit from Tamra Bentsen and her daughter, Louise, a SSSAS family. Tamra brought us a wonderful and generous lunch and has very thoughtfully offered to help connect us to doctors at MD Anderson for a consultation. Tamra was even willing to help guide us around Texas if we so chose to visit the medical center there. We thank the Bentsen family for their support and the cider was a wonderful fall treat!

This afternoon was a momentous occasion. Mattie moved from his bed to a lounge chair right next to his bed. This was not an easy task by any stretch of the imagination. You have to understand that Mattie has his left arm wrapped up, his right leg completed wrapped up, his right arm still recovering from surgery, his central lines connected to both an IV and a fentanol drip, and his left arm is connected to a perineural (a localized pain management system to his arm). Also let's not forget he also has a catheter attached so he can go to the bathroom without leaving his bed. So even if Mattie wasn't in pain, just managing this octopus of tubes is a feat. Mattie was given anti-anxiety medication to help with this transfer from the bed to the chair, but I am not sure that really worked too well. Mattie was still quite upset and in pain. Which leads me to believe as a mom that it isn't really anxiety that we are battling but true pain. It took four people to transfer Mattie to a chair, Peter, me, Jane (Mattie's nurse), and Brad (the physical therapist). I am not sure who the move was more traumatic for, Mattie or us?! It is wildly painful to see your child in so much pain, for all of us to be so sleep deprived, for us to be battling cancer, and I could go on, but you get the picture. Mattie was a brave soul, and found a way to work with us and transitioned to the chair. He put some slight pressure on his right foot, which was amazing considering he just had major surgery. Once in the chair, Mattie needed two tylenol and then literally slept for three hours in the chair. The move was that tiring for him! It takes a lot to slow down Mattie, so it should give you some idea of the magnitude of effort it took on Mattie's behalf to accomplish what he did today!

While resting for three hours, Linda came to visit. Linda isn't in the hospital normally on a sunday, but she was meeting a Brownie troop here who was visiting the hospital. Linda spent some time with us and we told Linda about how Mattie managed his transition to a chair. It is always wonderful to chat with Linda, and to hear her insights about Mattie and our situation.

By 4pm, we needed to transition Mattie back to his chair. Again, all four of us convened for this event. What an event it was. I found the transition back to bed much more debilitating. So much so, that after the transition, I had to sit down. I closed the hospital door, and closed the lights. I was in a terrible mood, and just wanted to barricade the door. I wanted to hear from no one and just wanted a minute of peace, to forget for a minute what our life has become. But who am I kidding, peace and quiet in the hospital is literally impossible. I think I got about five minutes to myself. I sat down because my back hurt, my arms hurt, and my stomach wasn't far behind.

My parents came to visit Mattie this afternoon, and were given a less than pleasant greeting from Mattie. Not that Mattie doesn't love them, or appreciate their visit, but on some level Mattie wants to control who can come into his room and spend time with him. He knows yelling at them is safe, so he was very nasty and told them to leave. Mattie can do this now to the people he loves, which can be very hurtful and depressing to experience. He does this to Peter and I as well, which we have learned to process and understand. But I can assure you it isn't a good feeling. So I could tell my parents were upset, and I spoke to Mattie about this. They separated for a while, and during this time my good friend, Amany came to visit. Amany spent time with my parents and we had a good time catching up with her. Amany has many talents, and as an empathetic mental health professional, her energy seemed to cut all the tension we were all feeling. In the midst of all of this, a nurse came to Mattie's door and delivered a gift to us from the Lee Family. Julia Lee is a RCC mom and friend, and she dropped off the book, Harry Potter for Mattie. We opened up the gift and the card, and the book began to change the tone of the evening. I asked Mattie if he would he like to hear Pop Pop read the book to him. At first he said no, but then I told him he never heard Pop Pop read a book before. My dad has a way of making the serious sound hysterical. So my mom and dad came back into the room, and the story of Harry Potter tranformed the tone of the room. Talk about magical, and bringing a book to life!

Mattie also had a special visit from Liza, one of our favorite volunteers. If you read the blog last night, then you know that Liza reminds me of Glinda the good witch from the Wizard of Oz. She is simply delightful and has a beautiful smile and demeanor. This was not a scheduled volunteer night for Liza, but none the less she came to the hospital and bought some books out of her own pocket for Mattie. She wants to start reading to Mattie on a regular basis. Can you believe the generosity of such a lovely young person? So after my dad made a hysterical mess out of the first couple of pages of Harry Potter, Liza took over. Mattie laughed for at least 20 minutes while hearing my dad read. At the moment, Liza is still here reading to Mattie. I just can't get over a young person who would give up her sunday evening for a child she doesn't know that well. I chalk it up to Mattie's magic and Liza being a special individual! Thank you Liza for all the wonderful books you brought Mattie.

We want to thank the Holm family for a wonderful dinner and coming by to say hi. Both Sarah and Annie are about the cutiest little girls and they were listening attentively as I was telling them about Mattie's day. I also want to thank my friend, Amany for coming by and also bringing us some food today and the remote control cars (one of Mattie's favorite things to play with). All the food is appreciated, and we thank the Bentsen, Holm, and Aridi family for keeping us nourished today!

On an aside, it is funny, one of the shopping bags that I saw today was from the restaurant, Panera. I noticed it has a holiday theme on the outside of the bag. Living in the time warp that I am in, I was stunned to see the bag. It doesn't feel remotely close to a holiday for me, and to me Thanksgiving and Christmas this year will feel like just another day in this long recovery process. In fact, I am on a holiday hiatus until Mattie gets better. When someone you love is sick, nothing feels, acts, tastes, or is the same anymore. It isn't depression it is just what it is!

I did get a lovely message from Emily W. Emily was one of Mattie's most recent babysitters. Emily wrote, "I have to tell you that I have been reading the blog as always but am more and more impressed with Mattie and also you and Peter everyday. There is no adult that would be able to handle Mattie's situation with such maturity, grace and dignity as Mattie does. How is it that a 6-year is more mature than most of us reading the blog!?? Honestly, everyday when I finish reading the blog I feel as though Mattie has taught me another lesson and set another standard for me to strive for. Incredible. Thank you for bringing such a hero into this world. There is not another person (child) who has touched and taught as many people as Mattie has...and there are no other people to thank than you and Peter. So, thank you."

In addition, I received an e-mail from Bunny Rodak (Rev. Rosemary's sister, Rev. Rosemary is the lower school chaplain at SSSAS). Bunny wrote, "The publisher of the Flightless Goose called me and said that the author and the illustrator (Husband and wife) would like to bring a signed copy to Mattie AND read it to him. I arranged for the purchase of the book, but I think the arrangements for presenting him with the book would definitely be better in your hands. Flightless Goose is a new, full-color, hardcover storybook for children. In the book, a goose becomes unable to fly and must learn to overcome the challenges of being different. Flightless Goose teaches important lessons to children about dealing with challenges such as disease, ailment, and disability. It also teaches about focusing on positive strengths, and how to treat people with respect and dignity. The book entertains as it educates. I sent Mattie's blogspot address to the authors so that they could follow his recovery, if they are able to find time. Mattie's courage is spreading inspiration everywhere. It is amazing how many people have been touched by him. I have his picture on my bulletin board, and when anyone asks about who he is, I share his story and ask for prayer."

I end tonight by thanking Joan Holden, Head of School at SSSAS, for her lovely phone call and message of support. She and the entire SSSAS community have and continue to be incredibly supportive. Thank you!