Quote of the day:
"No act of kindness, no matter how small, is ever wasted." ~ Aesop
Mattie's Absolute Neutrophil Count (ANC) dropped today down to 16. It was 36 yesterday, and we had hoped it would continue rising today. In addition, Mattie's platelet level dropped and therefore he had to receive his third platelet transfusion since last week's admission. As of today we are at day 10 in the hospital recovering from neutropenia. Peter and I decided to ask Dr. Abu-Ghosh yesterday whether Mattie's reaction to ifosfamide and etoposide was unusual (since this wasn't our experience with these drugs back in December). She told me that she has known some patients who took over 26 days for their counts to rise so that they no longer had neutropenia. Most likely Mattie's counts will not come back until sometime next week, therefore, Mattie's chemo schedule will be altered, since he won't qualify for methotrexate on monday. He will continue to receive MTP-PE next week though.
While I was home this morning, I had the opportunity to read through some other caring bridge webpages of other children around the country who have osteosarcoma. I have become connected with a lovely mom in Nevada and she maintains her son's webpage. This morning she alerted her readers to a teen who is losing the osteosarcoma battle in Texas. I was saddened to read this, but then I clicked on the link to read this young man's webpage for myself. Certainly I am dealing with an inordinate amount of sadness in my own life, but a part of me feels it is important to hear what others have experienced, learn from these experiences, and also hear about how the disease progresses in others. This young man was a very active person, played ice hockey,and looked like the picture of health. It is hard to believe how someone so young and full of life, could be losing his life now in an ICU, almost two years after diagnosis. It goes against the natural order of things in the world! When this happens, it makes you reevaluate everything. This teen's story truly bothered me all day, because no matter how similar or different his case may be from Mattie's, as a parent, you can't help but reflect on this and say this could be me in a year or two. I had a hard time shaking this feeling all day. My thoughts and prayers go out to this young man and his family, because no words could possibly make this situation better.
Mattie had two special visitors this morning. Tamra and her daughter, Louise (an SSSAS senior), came by to visit Mattie. Louise recently went with her family on a trip to Texas. While there she thought about Mattie and brought him back an adorable stuffed animal. One he has never received before, a red, white, and blue armadillo! Louise also gave him a great t-shirt, which says, "don't mess with texas!" This is a great shirt for him, because in reality I translate the shirt to mean... don't mess with Mattie! Thank you Louise for thinking of Mattie and for brightening his long day in the hospital!
When I arrived at the hospital this afternoon, Peter and I were on a mission to change Mattie's central line dressing. We normally change it every sunday, but literally we hadn't done this since Mattie was in the hospital. This was causing major havoc in the PICU. Apparently we are not being compliant with hospital policies regarding dressing changes. Technically we are required to change Mattie's dressing every other day (since Mattie has a unique dressing because the typical dressing change material gives Mattie dermatitis), but if you were involved in a dressing change, you would then understand why we only do it once a week. I can't do it alone, it takes both Peter and I to manage this. Mattie lands up doing a lot of screaming and crying, because it is hard to get the adhesive tape off of his chest to clean the area where the central line is going into his chest. It isn't a fun process. I have been getting so much pressure from the nurses to change it, so finally I wanted to put this issue to bed today! I am happy this is behind us, but Peter and I worked hard to accomplish this task. So far my once a week philosophy is working. Certainly if the dressing was dirty or falling off, we would change it immediately, but in all reality the less you touch the area and mess around with it, the better it seems to be for Mattie.
Mattie was thrilled that I brought in cupcakes today. I always make extras to bring to the nurses as well. I snapped a picture of Mattie with his cupcake and his new pal, the armadillo!
I sent Peter home late this afternoon. He needs a break away from here, and I told him, he should not feel any guilt about leaving us. Without a decent night of sleep now and then, neither one of us is going to make it. Mattie was lit up today like a light bulb. He was very active and yet unhappy being in the hospital, especially with the playroom closed and all the childlife staff gone for the weekend. I did take Mattie for a spin around the floor in his wheelchair. He refused to walk with his walker, and he is smart, because the deal he made with me was to use the walker to go to the playroom. With the playroom closed, he therefore sticks to the terms and conditions of his contract. No playroom, No walker! Mattie helped me do laundry today and of course while we were doing laundry, Mattie fed Linda's fish. Mattie loves watching the fish come to the top to grab the food, and to guess which fish will get more food.
Mattie and I watched the movie, Paulie today. Paulie is about a talking bird. Should be cute, should be funny, right? Well I landed up crying. The bird had quite a journey from being separated from the owner he loved, to helping a woman who is blind, to eventually landing up in a research laboratory and studied extensively because he can talk. Fortunately the movie had a happy ending! After the movie, Mattie and I played Mouse Trap, played with his cars and track, and then did some craft projects in the room. We even went on line to Lego.com and had our first experince with the Lego Digital Design center. Jenny told us about this, and we wanted to check it out. Basically you can design things with legos, virtually. Mattie enjoyed it, but it takes getting used to this form of building. It is not like manipulating the real bricks. It is now 11:30pm, and Mattie is wide awake, and I am trying to get him to wind down. I am trying to keep my head up and my eyes open in the process.
Needless to say, I am not sure how Peter and I are going to entertain Mattie tomorrow. What Mattie really needs to do is go home, he told me as much tonight. He needs a change of pace and his own toys for a couple of days. We want to thank the Bower family for a wonderful and tasty dinner tonight. We appreciate all your support. I end tonight with an e-mail I received from my friend, Charlie today. Charlie wrote, "Needless to say, I was so happy to see things back on a positive note for Mattie. As always, it seems to be the small things that we take for granted (food, conversation, caring touch) that help make the day go well. The nurses are clearly the heroes (heroines) of this story with their constant attention and concern for the well being of the patients as well as the parents. Nurses have their fingers not just on the physical pulse of the patients but on their emotional pulse as well. It is clear that the HEM/ONC nurses are really expert at that. I am so glad you had the support of friends yesterday. This has been a long stretch in the hospital and it is unfortunately not over yet. Anything that eases that situation is wonderful. The better you feel the more emotionally stable Mattie seems to be. I hope today is as good a day!"