Thanks Charlie for today's quote of the day!
“When you have come to the edge
Of all light that you know
And are about to drop off into the darkness
Of the unknown,
Faith is knowing
One of two things will happen:
There will be something solid to stand on or
You will be taught to fly” - Patrick Overton
I agree with this quote, Peter and I are learning to stand on the solid ground provided by all of you. Thank goodness our something 'solid' is SO SOLID!
At around 10:30am, Peter had a surprise visit from some friends who were going to take him out to brunch for his birthday. I am so happy that Peter got to leave the hospital for a little bit and celebrate this moment with some friends. Before the guys left the hospital, I took a picture of them. I don't think this would have crossed their minds, but I told them I wanted to document this special moment. Pictured from left to right is Chris Crowder, Tom Disantis, John Bonds, Peter, and Rob Frye. Peter told me he had a great time and had a lot of good laughs. Laughter is definitely the best medicine! Thanks John for helping coordinate this.
Mattie had a visit today from his buddy, Alex (a friend of his from RCC), and his mom, Julie. Julie brought Mattie a vanilla shake. Mattie drank most of the shake which was a great start to his eating plan today. Alex did a great job at understanding how Mattie felt, and did not seem taken a back by Mattie's physical condition. Alex brought several movies to watch with Mattie, but Mattie wasn't in the mood. They worked in parallel today, they were aware of each other, but Mattie wasn't able to connect today. At times I thought Mattie wanted Alex to leave, but when I presented this option, he said he wanted Alex to stay. Thank you Julie for a nice lunch (delicious cake) and a good chat! I think it is hard for Mattie to reconnect with his friends, and at times I am not sure who I feel more sorry for, observing Mattie unable to play with his friends like he used to, or the shock and fear I imagine Mattie's friends feeling with what they are observing. Either case, it is just a terrible situation for a six year old to have to deal with, and for us to have to live through.
I had the pleasure of meeting Christine O'Connor today. Christine is a friend of Bob Glennon's. Bob is a RCC parent and friend of ours. Bob affectionately calls himself the Bob #2 in our lives. It is a joke that Bob and I have going, since we know that Bob Henshaw is Bob #1 in our lives. In any case, Christine is a nurse and has worked at NIH and now at SOME. Christine is a lovely and sensitive individual, who follows Mattie's blog regularly. Though I never met Christine before today, I can say that Mattie's blog has yet again connected me with another lovely individual. Christine generously offered her nursing skills and input to me when I take Mattie home next week. Christine also brought Mattie a gift. Thank you Christine for the wonderful magnets, Mattie will really enjoy these. Thanks Bob #2 for introducing me to Christine. There is certainly an enormous amount of sadness associated with Mattie's illness, but the new connections and people we are meeting through the process is an indescribable feeling.
It is funny, while I was talking to Christine and Julie, I realized that while in the midst of caring for Mattie I have no time to reflect on anything. In a way that is a blessing. Because if I truly felt the reality of this situation, I probably couldn't function each day. After all, how do you function when you are living an inhumane existence? That may sound like an extreme word to use, inhumane, but trust me that is the nicest word I can use to describe the situation. We live a very powerless and uncontrollable life at the moment, and the worst of which is we as parents can't protect Mattie the way that we would like. Mattie is forced to grow up quickly, and he is seeing sides of life that I wouldn't wish upon most adults.
This afternoon, Mattie hit a wall of pain. He was maxed out on his pain meds, and yet he was still whimpering in pain. Normally I try to work this out with the staff at Georgetown, but I was frazzled and tired, and when this happens, guess who I call? If you guessed Ann, good guess. I called Ann, who put Bob on the phone immediately. I told Bob about my concerns who then spoke to Mattie's nurse about pain options. Mattie was given an ice pack for his arm today as well as tylenol. Mattie is not a compliant oral medicine taker and he refused liquid tylenol. However, I travel around with crewable tylenol that Julie gave me a month ago. Mattie's nurse, Jane, approved these chewable tylenols, and Mattie took two. About 30 minutes later, he was feeling better, and was playing with my mom and Liza (one of our favorite volunteers). Liza is a former ballet dancer, and has the most charming voice. She reminds me of Billie Burke (aka, Glinda the good witch in the Wizard of Oz movie). As I explained to Jane, Mattie's nurse, I believe Mattie has a HIGH treshold for pain. Afterall, Mattie was walking around with a huge tumor in his right arm for weeks, and he never took pain medication. That defies understanding really! So even though he isn't screaming his head off, that doesn't mean his whimpering doesn't mean he is in pain. In fact, whimpering for Mattie means LOTS of pain. I felt the need to clarify that today.
Later in the day we had a great visit from Kristin Emory. Kristin is a RCC mom and a physical therapist. Kristin helped us tremendously. She helped us reposition Mattie in bed, who looked twisted and very uncomfortable. After Kristin moved Mattie around, he started to feel better, and I so appreciate her sharing her skills with us. In addition, Kristin made us a delicious dinner. Her lime flank steak was divine, and there isn't a piece left over, and thank you for the arugula salad, I almost forgot how much I love it! The brownies are gone too! Kristin has offered to help Mattie when we get home, and I really appreciate her and Katie Parker (another RCC mom and physical therapist) who want to help rehabilitate Mattie.I received a nice and HUMOROUS e-mail today from my friend Susan. She wrote, "So I was cruising through my Webster's (Dictionary that is) in a vain attempt to improve my verbal skills. You won't believe what I saw!! I was so flabbergasted I just had to send it to you!! Well you, Peter, and Bionic Boy. Here it is:"
Possessing or displaying courage; able to face and deal with danger or fear without flinching. “Familiarity with danger makes a brave man braver but less daring.”-Herman Melville; “a frank courageous heart….triumphed over pain”-William Wordsworth; “set a courageous example by leading them safely into and out of enemy-held territory” [syn brave] [ant cowardly]
Example: see below
On the electronic front, we want to thank Tamra, Brian Boru, and Karen for your e-cards and e-mails. Mattie pitched a fit tonight and wanted to get out of bed. He is tired of lying down. He was complaining so much that Jane called Bob at home to get his approval. So we attempted to get him to sit up in a chair, but when Mattie realized he would need to be lifted and transferred by us, he then got very scared and refused to leave the bed. Pray for us tomorrow, as we attempt to motivate and help Mattie leave his bed for a chair. It is our hope that Mattie will be open to putting pressure on his leg so that he can at least stand. Jane, Mattie's nurse, has worked very hard with us for two days now. I told her to go home tonight and to get her rest, since we have a long day ahead of us with Mattie on sunday. Jane helped give Mattie a sponge bath today and to change his bed while Mattie was in the bed. It was a sight to see, and felt like mission impossible. But she was determined and helped us through it. I think the PICU here is experiencing something different. Many of the PICU nurses are having the opportunity to work with a HEM/ONC family and patient for the first time. We are definitely a different breed of patient from the typical PICU patient. Remember HEM/ONC patients spend a lot of time in the hospital, we are repeat customers, and in a way the nursing staff becomes our second family. The PICU staff are not used to this kind of relationship (most of their patients are one time visitors, and usually unconscious while in their rooms), but as Peter tells me, we are bringing the PICU nurses over to the dark side. Meaning, I believe they are becoming invested in Mattie and are getting used to taking a minute or two to connect and talk with us.