Quote of the day:
"There is a crack in everything, that's how the light gets in." ~ Leonard Cohen
Monday night was uneventful for the most part. Mattie got up a few times during the night to go to the bathroom, since his home IV hydration started up again. The funny part is when we took Mattie to bed last night, he did not want to sleep in his own bed, he wanted to sleep on the aeromattress on the floor in his room. He asked if we could switch beds. So I slept in his bed, and he slept in the one I normally sleep in. That was fine by me! I was up a few times last night, and I could tell so was Peter. He was downstairs, the lights were on and so forth. He fell asleep downstairs doing work. At 5am, he was still down there, but I figured waking him up to go to sleep was pointless. So I let him stay there. When I officially got up this morning, I headed down the stairs, but I did not see Peter's computer, so I figured he was at work. Then I heard a rustling in the kitchen. I panicked because I did not know what the sound was. Mind you, I am tired and not always thinking clearly these days. I slowly approached the kitchen, and there was Peter on a conference call in the kitchen. I think we scared each other at the same time!
Peter has been under the weather for a few days, and decided to work from home today. Which was a good plan, because it serves no purpose for him to get sick. He is an important part of our equation. Ann visited us today at 11am, and I convinced Peter to leave the house and walk with me and have lunch together. Ann was a sight for sore eyes, she is like our 911. Peter and I really needed to regroup today, and we can't do that at home. Funny how our home has become anything but relaxing for us. Illness has a way of changing things profoundly. The beauty of Ann, is she comes in with a smile and high energy. Just what Mattie needs. She brought all sorts of activities that instantly engaged Mattie. Mattie was thrilled to say good-bye to Peter and I, and I really think Mattie feels Ann is his friend, and she comes solely to see him. It is very cute. Ann came with snacks of all kinds for Mattie, and coffee for Peter.
Peter and I took a walk to Washington Harbor, and walked along the Potomac River. We then ate by the water. Today was frigid, but at least the sun was out. But frankly it did not matter. You accept freedom in whatever form it comes in. Peter and I had a chance to chat over lunch and I had a chance to hear about how work is going for Peter and to discuss Mattie's upcoming walk on May 9th. Thankfully we have a whole team of wonderful members of Team Mattie working diligently on walk preparations! Peter was reflecting on some things, and as he spoke, I landed up in tears. He captured the essence of what we are going through beautifully! Ann, gave us a special gift today of three hours to ourselves!
When we returned home, Mattie was having a ball. Mattie did all sorts of activities such as digging for real gold. Ann captured Mattie in motion today. Some of the pictures are classic Mattie. I particularly love the one of Mattie washing his toy cars with one hand and eating a donut in the other!
Left: Mattie cleaning his gold pieces that he dug out of a big clay block!
Right: Mattie multi-tasking! Cars in one hand and a donut in the other.
Left: You can see all the cars Mattie washed this afternoon! He was BUSY!Thank you Ann for spending part of your day with us. It made a big difference. After Ann left, I decided to do more laundry in order to prepare for heading back to the hospital potentially on thursday.
This evening, Peter and Mattie were working very hard on their lego addition to Mattie's village. It is coming along nicely. It is a beautiful structure. I took some pictures of the work in progress. Mattie wanted everyone to share in his excitement.
JP, our neighbor and JJ's owner, came to visit us today, and brought Mattie his favorite pizza and pasta. Thanks JP for thinking of Mattie and us. While JP was visiting he commented to me about Mattie's Mr. Sun painting. JP is an International Art Dealer and he told me that Mattie's work reminded him of Julian Schnabel's works. Especially because of the vibrant colors and the way Mattie signed his name on the painting. So I googled Schnabel tonight and I concur with JP's assessment. I attached the link below, so you could see some of Schnabel's paintings. When Mattie signed his name to Mr. Sun, he integrated his signature into the painting, just like Schnabel integrates words into his paintings. Interesting!
As wednesday approaches, we are heading back to the hospital tomorrow afternoon for a blood test to determine Mattie's blood count. He needs an ANC of at least 1500 to qualify for chemo on thursday. After his blood test, Mattie has an audiogram. Linda is coming with me to the audiogram, in case, like the last time, the audiologist wants to talk with me afterward. Every time Mattie takes one of these tests or scans, you have your heart in your mouth, not certain what they are going to find.
We want to thank the Katcher family for a wonderful dinner tonight from California Pizza Kitchen. Your support is greatly appreciated! I end tonight with several e-mail messages I received today. The first is from my friend, Charlie. Charlie wrote, "I was fascinated by Mattie's play therapy session. I think it started out as an art project but it seems to have morphed into something else entirely. It is wonderful that Jessie and Jenny gave him space to explore his negative feelings and that you were able to come in and help him resolve what was going on in the session. Mattie knows that his behavior is not what would normally be acceptable but of course the situation is not normal. He is angry and resentful (who would not be?) at the people who are doing things that hurt him and yet he knows they are trying to help. He has all these conflicting feelings and no way to resolve them except through action. Your intervention was timely and perfect, helping Mattie to see that the negative behavior will hurt the doer as much as the people who are subject to it. While this may not change his behavior very much during treatments, it tells you that he will be willing to work on changing it once the treatments are completed. Hang in there, Mattie is telling you that the sun and positive feelings he painted still remain within him, even on the most cloudy of days."
The second e-mail is from my friend Jen. I met Jen at Boston College while we were pursuing our master's degree in Biology. Jen reads our blog every day, and is supporting us from afar. Thanks Jen for the lovely poem on hope!
Hope ~ Emily Dickinson
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
The last message was a posting from Charityfocus.org that Charlie sent me today. I liked the sentiment so much, I am posting it here!
Inspiration of the Day: It has become a beloved ritual at Dana-Farber's Cancer Institute, where they are building a new facility. Every day, children who come to the clinic write their names on sheets of paper and tape them to the windows of the walkway for ironworkers to see. And, every day, the ironworkers paint the names onto I-beams and hoist them into place as they add floors to the new 14-story Yawkey Center for Cancer Care. "It's fabulous," said 18-month-old Kristen Hoenshell's mother, Elizabeth, as she held her daughter and marveled at the rainbow of names. "It's just a simple little act that means so much."
Leaving your mark is indeed important for children with cancer and their family. Mattie has had the opportunity to do this with two ceiling tiles in the Lombardi Clinic and with his footprint on the pediatric welcome sign that will be displayed on the fifth floor of the Comprehensive Cancer Center. Somehow these marks signify a moment in time, because you don't want your child or his/her presence to ever be forgotten nor do you want anyone to forget the struggle and journey he/she had to undertake to try to become whole again.
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