Tuesday, July 21, 2009

Tuesday, July 21, 2009

Quote of the day: "I believe that every human mind feels pleasure in doing good to another." ~ Thomas Jefferson

Mattie had a busy day that started at 8am. Mattie had an appointment with Dr. Biel, his psychiatrist, in the early afternoon. Mattie looks forward to his appointments with Dr. Biel mainly because Mattie thinks he is going there to play. They have a good rapport with each other, and I am happy to report to Dr. Biel and to all of you that Mattie is no longer experiencing any "strange" feelings or emotional outbursts like he did last week, when we weaned him off of anxiety and pain medications. Amazing to watch your seven year old going through withdrawal symptoms. Mattie still needs "medication" to calm his pains at night so he can go to bed. But the only thing we are giving Mattie now to "help" him sleep is Tylenol, and soon even that will disappear. I am thrilled to have him off all narcotics! Congratulations Mattie!

After Mattie met with Dr. Biel, we sat outside in his favorite spot at the hospital, and he had some lunch. However, in the midst of eating, he saw two people who looked familiar to him. So he had me stand up to see if I recognized these individuals. When I said no, the next thing Mattie requested from me truly caught me off guard. Mattie wanted me to take him to C52, the PICU. I was stunned! He wanted to see his nurses. So we took the elevators to the fifth floor, and before we headed into the unit, we checked to see if Linda was in her office. We did find Linda, and Linda helped bridge the way for Mattie. She helped us get in through the security doors in the unit, and even located Tricia and Kathleen for us! Tricia and Kathleen were THRILLED to see Mattie. They loved his hair and enjoyed touching it, and both felt that Mattie looked great. They made a big deal over him, and his Lego creations that they have seen on line. I am not sure what to say about the fact that Mattie's HEM/ONC nurses read Mattie's blog. These are women who live and breathe cancer each day, and yet in their spare time they want to check in on their patients by reading a blog. I am deeply touched by the connections they have made to Mattie and to Peter and I. This is why I always say being a HEM/ONC nurse is not only a profession, it is a lifestyle, because their care and compassion does not end with their 12 hour shift! I was so intimidated to go back to the floor, but the nurses and Maria (one of the PICU administrative support staff) made us feel welcomed again. In a way my family is in transition. We are in transition to finding our identity. We no longer live in the PICU, and yet we clearly are not part of the "real" world either. So where does that put us? Not sure! Thanks Tricia and Kathleen for a nice visit and your support that reaches outside the PICU walls.

Pictured in the back row is Vicki and Bernadette (one of the nurse techs in the PICU), and in the front row is Tricia, Mattie, and Kathleen.

Linda let us know that CR (short for Cecilia Rose) was visiting Georgetown today. CR was one of our great HEM/ONC nurses who we met in the fall, before she left to work for the Peace Corp in Ethiopia. CR is now an HIV/AIDS educator in Ethiopia and it is fascinating to hear her stories and the cultural experiences she is having there. Despite CR being so far away, she still stays connected to Mattie's story and even signed his LIVESTRONG dedication page! After stopping by the PICU, we headed to clinic to find CR. Pictured on the right is Brandon, CR, and Mattie. I truly enjoyed our visit with CR and I hope at some point she comes back to Georgetown to work with children who have cancer. She just has the personality, disposition, and healthy life perspective needed for this challenging job.

While in clinic for a short period of time before physical therapy, Mattie challenged Brandon to another boat racing contest. Last week you may recall that Mattie and Brandon built boats with the help of Jocelyn and her sister, Hannah from materials they found in clinic. Mattie won last week's race, but apparently Mattie wanted to test fate. So Brandon and Mattie made boats out of tinfoil this afternoon. Mattie is very much into this competition and Brandon is a good sport about the whole thing. It was a nice surprise to see Brandon and his mom today, and I am happy to hear that Brandon will be around this Thursday during Mattie's clinic day. Thursday the clinic is hosting a Sarcoma awareness day! Many osteo children and their families will be present for this event, and I am disappointed I won't be there to meet them. However, Thursday is our one year anniversary of Mattie's diagnosis. A day Peter and I will NEVER EVER forget. Ironic that the Sarcoma Awareness day falls on Mattie's anniversary!

Left: Brandon, CR, and Mattie sitting at the art table, designing tinfoil boats!

Right: Brandon's boat is on the left with green tape, and Mattie's boat is on the right with yellow tape.

Mattie was so excited about the boat race, that he got up out of his wheelchair and stood at the sink with Brandon. Jessie, one of Mattie's art therapists, was the judge of the race. Mattie and Brandon tied in the race, but the race was judged based on beauty, silliness of design, and buoyancy! So needless to say, Mattie has big boat race plans for Thursday's clinic visit!

Mattie then headed to physical therapy with Cathy, Anna's colleague. Cathy is really trying with Mattie, and he did fine for the first part of therapy. Mattie had me riding scooters with him, doing sling shots of bean bags across the room, and a host of other activities. However, toward the end of the session, Mattie had to stand and walk using the parallel bars. This is where Mattie became upset. He did walk through the bars once, but after that point he had enough. He did not want to do any more and certainly did not want to stretch. He started to become VERY upset. He wouldn't look at me, and began crying. The crying continued into the parking lot. However, once the car was moving, he fell asleep from exhaustion.

I headed to the conference reception tonight, and Mattie stayed with Marisa for about an hour before Peter came home. Then later this evening, Peter's parents arrived and spent some time with Mattie. Mattie is having a great time with them. By the time I got home from the reception, dinner had arrived thanks to the Bires family (we appreciate your continued support!) and was on the table. So I joined everyone for dinner, and then afterward proceeded to write tonight's blog. I have an early 7am start tomorrow, God help me. By the time the week is over, I may need my own private PICU! Attending the reception was an awkward feeling for me tonight. Awkward because I don't feel like this is part of my life anymore, funny, something you have spent your life studying and working toward for years, can be replaced instantaneously. In fact, instead of outside events cheering me up and giving me a break, the only thing many of them consistently provide me with is sadness. Sadness because this isn't my life anymore, I can't relate to it now, and in many respects I have seen, felt, and lived through things that some people can never understand (THANKFULLY, of course!). After dinner, Mattie crawled over to me, worked his way to a standing position and literally sat on my lap for over 20 minutes. He was cuddling and clearly missed me for the few short hours I was gone. It is moments like this when I truly appreciate this closeness, and frankly everything else around me could be going haywire, I don't care, because I have the need or maybe the healthy perspective now to appreciate and savor these tender times.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Monday's blog just confirmed what I have always suspected. No one can "see" what is right in front of you consistently. This is one of the reasons we send our children off to summer camp, so we can get a break from them and see how much they've grown and matured. I am glad that Linda was able to point this out for you because when you see Mattie constantly it is impossible to evaluate him objectively. I was very touched by Mattie's attempts to care for you, to offer you his medications, to entertain himself quietly so that you could rest. This is a huge step forward for him and was probably impossible just a few months ago. It shows that the caring and love you give Mattie constantly are watering a fertile field and that the "crop" of empathy as well as other positive emotions are beginning to reemerge. Although we'd like it all to be just what we are trying to encourage, even the best fields have some weeds (misbehaviors) that need to be discouraged. I know that with your excellent mothering and counselor skills that this will happen."