Quote of the day: "To be complete, a healing system must be able to cover the entire field of human experiences-physically, mentally, and spiritually. Any system which denies any part of this trinity fails in its attempt to heal to the same extent to which it denies any part or parts." ~ Stanley Burroughs
Charlie wrote, "Why is it that the patient's needs always seem to be in last place behind the needs of the doctors, nurses, technicians, etc at the hospital? The patient is finally resting after hours of exhausted tossing and turning but blood pressure is taken at 4:30 AM no matter what. Is this really necesary? Is this helping heal the patient or delaying the process? A nurse opens the door and all is dark and quiet in the room, parents and children are sleeping, Let's flip on the light and check the monitors, check IV lines, take temperature and make sure we wake everyone in the process. Then a couple of hours later the child is uncooperative, the parents are short tempered and the staff says, these people don't appreciate what we do for them. What happened to the healing process? It gets hijacked in the name of convenience and routine. If we want to improve medical services and save money by getting people out of the hospital sooner, we need to find ways to help them heal faster, not just move them out early. Ignoring the mind-body-spirit connection is not just wasteful, it is hazardous to a patient (and family's) long term health."
Mattie had a busy monday night. He was up every hour going to the bathroom. Fortunate for me, Peter did all of the jumping up at night. I was too tired to move. I don't know how Peter got up for work this morning and was able to function, but I could write a blog entry on this alone. The complexities of trying to work full-time, to try to stay competitive, and yet be able to support Mattie emotionally is a real balancing act. But it seems to me the work place needs to get a better handle on how to support employees who have ill or impaired family members to care for. Yes I realize that in 1993, Clinton passed the Family and Medical Leave Act, which is a start, but so much more needs to be done. Just like with bereavement issues, I find our work culture makes allowances for a employee for a week or two, but there after, things are expected to go back to normal. If they don't go back to normal for you, well then something is just wrong with you, and you basically become dispensible. I have seen this happen many a time with several of the caregiving clients I have worked with.
This morning, Mattie slept in until 10am. Kathleen, Mattie's nurse, came and chatted with us, and she told me that she attended the music event fundraiser in Old Town for Mattie, while we were away in NY. I was very touched by her attendance and willingness to support Mattie. This only further illustrates the dedication of Mattie's nurses to his treatment and recovery. We learned early in the day that Linda would be away from the rest of the week because she has had a death in her family. We were saddened to hear this, and of course, I know Mattie will really miss Linda this week.
Mattie had a special visitor today. Brandon, his big buddy, came back to the hospital for a check up. So we had the good fortune to catch up with him and his parents. Brandon looked wonderful. Like the picture of health. It is hard to believe he was the same fellow we saw stuck in the hospital back in November. A lot of healing happened for him in just two months. I think life for Brandon is complex. He is 18, and at the moment has No Evidence of Disease (or as the lingo around here goes, NED), but because he had chemo, his immune system is still somewhat compromised and his doctors are recommending that he go to a community college rather than go away to college and stay in a dorm. This has been a blow to an 18 year old, who is fighting for his independence and his ability to explore the world on his own terms. As I was talking to Toni, Brandon's mom, I could also understand her fears. It is very hard to go from dealing with cancer, being stuck in the hospital (and the hospital becomes your new community), to hearing that your son is now cancer free and you no longer need to report to the hospital. To some extent you just can't accept this news, and you are just waiting for the next shoe to drop. I can see why there are support groups for families of survivors of cancer. In fact, I was telling Toni today, that if Mattie ever gets over this, I have no idea what I want to do with my life. Everything that I thought I wanted to do and accomplish now doesn't mean as much to me anymore. Cancer changes your life in a profound way.
Brandon played with Mattie in the childlife room. They played the classic game, "You've got cooties." I snapped a picture of them together (Brandon is holding the cootie that he built). Brandon is such a good sport, and a great big buddy. We really miss him and his family, but we also are thrilled about Brandon's recovery. You may notice that in the picture there is a little boy who has his head on the table. Well this little fellow is Mattie's age, and we have gotten to know his family over the last couple of months. He did not want to be in the picture, but Mattie had a good time playing with this little boy today. They are both spitfires and have a lot of energy. It was nice to see Mattie relating to Brandon and this other boy today. But then again, Brandon has a way for helping Mattie come out of his shell.
Mattie had a physical therapy appointment today at noon. Dr. Matt (psychiatrist) also attended the meeting. Mattie was eager to get out of his room, and he used his walker with Anna to go from his room, into the hallway. But he tired easily and then had to sit on a hallway bench. He then did not want to walk again for the rest of the session. Anna and Dr. Matt got Mattie to use his legs and kick balls and things, but I did not see a lot of walking. Both Anna and Dr. Matt will be working with Mattie again tomorrow morning. It is funny, I was reading a blog maintained by a mom I have befriended in Nevada. Someone posted a comment on this blog. In the posting a mom said it took her child 6 months after chemo was completed to begin walking again, and then an additional 6 months thereafter to walk without a limp. So we are talking about a year's worth of recovery time once chemo is completed. What a time frame! I begin to worry about how Mattie can go back to school, when he still will need further surgeries, will need MTP through September, and he may not even be walking well in September. When all this hits me, I then realize I need to take a step backwards and adopt the one day at a time philosophy. But it is hard not to get carried away with worry and stress over all of this.Mattie's PT session did not end well. Mattie wanted to go back to his room, and basically asked Anna and Dr. Matt to leave the room. He only wanted me present. He landed up sitting next to me for 20 minutes crying. Before all this transpired, I had a lovely visit from Laurie. Laurie is a lower school mom at SSSAS. Though I knew of Laurie, I never met her personally. Laurie has been very supportive since Mattie was diagnosed and today she brought Mattie and I a wonderful lunch and gifts for Mattie. Mattie ate his happy meal, and he loved the cute cookies. One was in the shape of a VW bug. Mattie will also enjoy building the lego's bionicles. Thank you for the Caryle Grand salad, it is one of my favorites and for the soup, and chocolate goodies. Laurie wrote me a lovely note, and the one positive in all of this is the opportunity to get to know all our wonderful supporters.
Mattie wanted to spend a good portion of his day in his room today, but finally this afternoon he ventured back out and we went to the playroom. We met up with Mary, a volunteer. We met Mary a few months ago but haven't seen her since. Mary is delightful, very good with children, and wants to apply to medical school. She played with Mattie, and then Mattie asked to paint. Mattie painted three wonderful things. One was a picture of a watermelon, the second was a picture of a jack o lantern and the final painting was that of a slice of pizza. Everyone loved his paintings and they are now posted to the outside of his room door. I snapped a picture of the paintings with the artist today.
We want to thank Margaret for a wonderful dinner tonight. Mattie loved the shrimp, the fresh mozzarella cheese, and he even tried a spinach ravoli. We all enjoyed dinner, and the canoli was a special treat! Margaret called us today to check in as well, and it was nice to connect with her, despite Mattie screaming that I should get off the phone. Mattie was excited to see Peter tonight, and Mattie showed him all his paintings and science projects he has around the room. In one container we have a rubber lizard hatching from an egg, and in another container we have an octopus which is growing in size each day (Ann you would be amazed how much bigger your 8 legged friend has gotten this week!). As I sign off for the evening, Mattie is watching a Scooby Doo and barking out commands left and right at us. I am wiped out dealing with his need for constant attention today and the need to reprimand him. It takes a great deal of effort on my part and Peter's to assure that Mattie has a good and productive day. I always felt when you become a parent, you lose a bit of yourself in the process, but now that we are caring for a child with cancer, it takes the losing yourself to a WHOLE new level.
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