Quote of the day: "Some people think only intellect counts: knowing how to solve problems, knowing how to get by, knowing how to identify an advantage and seize it. But the functions of intellect are insufficient without courage, love, friendship, compassion and empathy." ~ Anonymous
The National Organization of Rare Diseases (NORD) acknowledges February 28, 2009 as World Rare Disease Day. The purpose of this day is to call attention to the public health issues associated with rare diseases (of which Osteosarcoma is one!), which affect nearly 30 million Americans and countless others around the world. Though my family lives with this rare disease 24 by 7 (and will be for the rest of our lives), it is wonderful that at least there is one day a year where such rare diseases are acknowledged in some way publicly.
Peter tells me that Mattie was up every two hours on friday night. Mattie did not make it to the bathroom in time at some point during the night, and Peter and the nurse were cleaning up Mattie and the bed. As for myself, I couldn't wake up this morning and literally slept until 10:30am. I arrived at the hospital around 12:30pm, and Mattie had two visitors today. Tanja (a SSSAS mom and friend) and Carrie (my teaching assistant and now friend) came to visit Mattie and entertain him for two hours or so, so that Peter and I could leave the room and have lunch on Georgetown's campus. Carrie came loaded with a bunch of goodies Mattie really wanted, such as yogurts and yogurt tubes. Thank you also for the fresh fruit and cupcakes! Tanja came loaded with amazing activities. These ladies transformed Mattie's room into a fun and educational center. It was hard to believe Mattie was actually isolated today, because he did so many wonderful activities right within his room. I am not sure how I can ever thank Tanja and Carrie. Mattie is still talking about the fun things he did today! When we left for lunch, Mattie was working with music sticks, and bouncing and dancing to the music. Even Tricia, Mattie's nurse, was getting into the dancing mood!
Carrie snapped some pictures of Mattie playing today. Clearly Mattie was very engaged. He did several science experiments, participated in many activities that involved body movement using balls, and even got to explore different kinds of bugs under a magnifying glass. Check out the pictures!
Left: Mattie examining the music stick and seeing how it worked.
Right: Mattie and Tanja observing a chemical reaction, that will expand and blow up a balloon on the top of a bottle.
Left: Mattie is watching a volcano erupting!
Mattie showed me all the wonderful projects he did with sand, test tubes, and bugs. I think Tanja and Carrie stimulated Mattie incredibly, so much so, that it is 10pm, and Mattie is now sleeping. Unheard of! Thank you for making his day, and ours. Your efforts were so appreciated, and did not go unnoticed.
While Tanja and Carrie were with Mattie, Peter and I had lunch together, and then my dear friend, Lorraine, came to visit me this afternoon. In fact, I spent several hours outside Mattie's hospital room today. It was wonderful to chat with Lorraine. Lorraine and I met each other 15 years ago when we both started graduate school at GW. Lorraine has been through many ups and downs with me, and has been there throughout Mattie's birth and development. In many ways Mattie's illness deeply affects Lorraine. Lorraine and I spoke about Mattie, his care, and my concerns. While talking with Lorraine, I was able to finish my lunch. It took me several hours to eat today, because food isn't going down too well these days. Thank you Lorraine for your company and friendship. Mattie LOVES the bug book you brought him. We read the whole thing tonight, and we started one of the lego sets. They were a hit.
When I got back to Mattie's room this afternoon, Karen (a RCC mom and friend) came to visit us and brought us a homecooked dinner. Thank you Karen for the stuffed shells and wonderful pie! Mattie actually ate the shells before moving onto yogurt and cupcakes! I had a lovely conversation with Karen. She made me feel good, appreciated, and understood. I sometimes feel guilty for not having more energy to play with Mattie, but Karen snapped some sense into me. I felt like she really got it, and it is a very empowering feeling to be understood and heard. Thank you Karen!
I sent Peter home tonight to get some rest. He is wiped out, but I know that this one day at home (of course better than nothing), doesn't accomplish a whole heck of a lot for either of us, because we are so fatigued. I did speak with Tricia (one of our favorite HEM/ONC nurses) tonight about Mattie's VRE situation. Though Tricia wasn't our nurse yesterday, I learned that she was out there advocating for us on friday. This is one of the things I respect about Tricia. She truly looks out for her patients and families. She warned everyone yesterday that I wasn't going to pleased with this massive oversight, and she was 100% correct. Tricia did tell me that she spoke to several microbiologists today at the hospital, because Mattie's stool culture from yesterday also turned out positive. The microbiologist told Tricia that VRE could be colonizing in Mattie. I don't have a true understanding for the nature of this problem, but I can assure you I will be asking a ton of questions about this tomorrow. I was hoping the culture would be negative today, so this would be our first negative result out of three in order to get off of the contact isolation status. But I see this isn't going to be an easy process. However, I am more certain than ever that Mattie got VRE from a traveling nurse who a week ago did not use gloves when working with Mattie. This gets back to my resistance to work with nurses we do not know. God help this nurse, if he gets assigned to work with Mattie again.
Mattie is clearing Methotrexate fairly well. His blood methotrexate level was 2.80 today, and he needs to have a .1 or lower level to be discharged from the hospital. On sunday, Mattie has two SSSAS teachers coming to visit him. Caroline, his piano teacher, and Leslie, Mattie's kindergarten teacher. I think this stimulation will be very good for him and will break up his day of isolation. I can't thank both of these professionals for finding time in their weekend for Mattie.
As tomorrow is March 1, I realize we are heading into month 8 of Mattie's treatment. Despite the heartache Peter and I live with each day, we continue to be so thankful for the incredible support from our RCC, SSSAS, and GW communities. Today was the perfect example of people reaching out to us, and their passion to make a six year old happy and engaged. Peter and I are really seeing the worst and best of life at the same time. Thank you all for your continued support and love.
I end tonight's posting, with an e-mail I received from my friend, Charlie. Charlie wrote, "Today's quote sounds like some of the medical staff, who want to discuss a situation in a way that is devoid of all emotional content regardless of the impact on a patient's emotional and spiritual well being. I was horrified to read about Mattie's results and the lab's failure to follow up. To compound the negligence, they attempted to pass the blame off on others. I understand that Mattie needs to be isolated but, some understanding, empathy and an admission that this whole situation was not handled properly would be in order here. Perhaps you should ask if it is possible that Mattie contracted VRE from another patient who was also not informed that he or she was positive for this. Maybe that would wake them up since almost everyone who contracts VRE gets it from someone else in the hospital. I can only imagine how much more difficult this isolation is making the already stressful situation of being back in the hospital. I hope, although I don't have any faith, that steps are being taken to mitigate the effects of this on your family as much as possible. I also hope that the hospital is going to show how they intend to ensure that this situation does not happen again. Thank goodness for your advocacy and voice on Mattie's behalf; I cannot imagine how awful the situation would be without parents as dedicated as you both clearly are."