Saturday, August 22, 2009

Saturday, August 22, 2009

Quote of the day: "Tears are the silent language of grief." ~ Voltaire

Thank you Charlie for this beautiful poem!

A sad journey
Filled with loss
And painful steps
And more steep slopes
Than one person can
Brave alone.
And so we walk
Arm in arm
And I will support you
Until we reach
The destination
None of us wanted.

Mattie now goes to sleep early and wakes up quite late. Tonight, he was in bed by 8pm, which sounds like a typical bed time for a child, but you need to understand that just about two weeks ago, Mattie was going to bed at 1 or 2am, and waking up at 8am. In addition, just two weeks ago, Mattie was breathing on his own without the use of oxygen, and had a ton of energy to play and do physical therapy. Now just holding is body up is taxing and tiring. There are times during the day, he is talking to you, but he is doing this with his eyes closed. Mattie's pain appears to be managed, but remember he has a 37mcg Fentantyl pain patch on his back and a continuous drip of IV morphine. Despite the pain management, he continues to experience nausea and vomiting, even though he is on plenty of anti-emetics. I am happy to report thought that Mattie is fever free and the Vancomycin seems to be helping.

When Mattie woke up at noon, he was excited to see what the tooth fairy left him. She wrote him a note to let him know she was fresh out of hotwheel jeeps and 18 wheelers, but did leave him two cars, and promised as soon as she could find what he requested, she would be back. Mattie was very happy with this deal, and even more thrilled that she left his tooth behind for him to keep. Mattie has lost about three other teeth prior to this one, but this tooth fascinates him. He has been carrying it around in his tooth fairy box all day!

Mattie played with my parents in the early afternoon, while Peter and I had lunch outside on the deck. Mattie continues to play his Captain Mattie game, and my parents play intensely with him in shifts. They play, take a break, and then come back and play. I think this strategy seems to be working for Mattie, and as Peter and I commented tonight, we are thankful he is playing with them, because we are so BURNED out from playing, advocating, providing medical care, and of course now having to think about Mattie's pending death.

Toward the late afternoon, when Mattie was getting tired, I left the house to visit Ann's parents at their assisted living facility. Ann is currently out of town, and I try my best when she is away to visit her parents, because I know the level of isolation they experience on a day to day basis. I certainly wish I had the time and energy to do more to help Ann's parents, but despite the fact that I do not visit them consistently, I find that Mary and Sully (Ann's parents) are always very appreciative of my visits. In fact, Mary and I had a very moving conversation tonight. She told me she would give up her life, if it meant that Mattie could live. I found Mary's offer very touching because in all reality, she and I have only known each other for a year. Yet, I think time in this case doesn't matter. What matters is this is a mom who has already lost a son to cancer, and wants to prevent another mom from having to experience this same level of heartache. Mary also looked at me and told me that I was a good person, who does many loving acts of kindness. She told me that God sees all of this, and hasn't forgotten about me. I am not sure how she knew this was how I was feeling, but it could be based on her own experiences that she is deducing how I am feeling. Needless to say, I think my visits to Mary and Sully, have taught me one very important lesson. Through suffering and experiencing some of the worst things life has to offer, it bonds you as friends in a very powerful manner. Because I know Mary loves the feeling of getting her nails done, I gave her a manicure tonight, brought her fresh flowers (because to me this brightens up even the darkest of days), and also sat with Mary and Sully in their room while they were having dinner. I desperately needed to get out of the house today, and I am happy in doing so I could bring happiness to someone else's day.

When I arrived home, my parents were playing with Mattie. However, Mattie was wiped out by 7:15pm, and wanted to go upstairs to bed. So we carried him up, which is a feat, since he is connected to two IVs and oxygen.

Peter did let me know that Rev. Jim Greenfield, the priest who gave Peter and I pre cana and baptized Mattie, is visiting us tomorrow to discuss Mattie's funeral and answer other questions we have. I have known Jim for years, since he was the director of the Newman Center at The George Washington University. Jim is also a mental health counselor and gave me my very first client, so I feel very comfortable talking to him. I just wish that the conversation was of something more life affirming. Peter and I have been talking about what to do to acknowledge Mattie's death without having a typical wake. We will certainly have a funeral, but growing up I went to enough wakes with open caskets, that I know this is NOT something I want for Mattie, not for a child. Instead, I am reflecting on what my neighbor, JP, told me about. He told me about a traditional custom in Puerto Rico, in which there is a celebration honoring the memory of the child before the actual funeral. So I am giving that some thought and will discuss this with Jim tomorrow.

We would like to thank Nicole L. for a lovely home cooked dinner and fabulous cookies. Thank you for your support!

I would like to end tonight's posting with two messages I received today. The first message is from my friend, Charlie. Charlie wrote, "This continues to be a journey of sadness and loss of childhood joys for Mattie. It hurts to read how much he wants to do but cannot; he lacks the energy to play, the ability to eat. And how awful for you to have nourishing food that Mattie is unable to partake of. We all take for granted our family meals; to be able to sit and enjoy them together. You and Peter have been denied that joy for some time and I wish I were able to give it back to you. I think Mattie knows he is fragile and that he is far sicker than ever and his wish is to remain always a part of your life. I hope even in the midst of these trying, exhausting days, there are moments of love to store in memory. I hope the chemotherapy to come is able to give him some physical comfort and relief from pain. We all continue to pray for you."

The second message is from a fellow colleague and friend. Diane wrote, "I was devastated to read that you’d run out of medical options for Mattie. I’m reading more and more of your blogs through tears. I so want to offer you and Peter comfort at this time when there’s none to be had. Months ago I wrote to thank you for starting Mattie’s blog. You inspired me to create an on-line community for my father in his sudden illness. Dad’s heart attack led to a cascade of organ problems—above all, compromised lungs. I’m heartbroken to realize your experiences now echo ours. Maybe it will help to share how your family’s served as a beacon for me and surely hundreds of others this past year. There’s so much to learn from your blog. Above all, your family’s strengths. Your gifts as parents. Also the dedication and skill of (many) medical staff. As you’ve seen, critical care nurses don’t just employ technique, but also empathy and insight. The best doctors share their expertise, but also their tears, with family making life-and-death decisions. Also the import of friends, family, and community. Finally, to my surprise, and a little embarrassment, I find each blog puts my own experience more into perspective—recalling last year’s hospital sights and sounds with less passion. Please know that you have one more warrior here in your fight against osteosarcoma and childhood cancer. Your family’s in my prayers and the prayers of so many others. Perhaps someday we’ll understand how and why those prayers were answered with such challenges."