Tuesday, April 28, 2009

Tuesday, April 28, 2009

Quote of the day: "If you don't like something change it; if you can't change it, change the way you think about it." ~ Mary Engelbreit

A quick walk update! We are thrilled to report that we have about 200 people registered for the walk! We can't thank you all enough for your energy and support behind the walk and I appreciate you passing along our website to friends and family. I am receiving some of the nicest e-mails from people I have never even met who are behind this event and committed to supporting Mattie and my family. We deeply THANK YOU!

It was my hope that I could sleep in this morning, since Mattie typically doesn't wake up these days until 10:30 of 11am. Mattie had me up and down every couple of hours last night to use the bathroom. I know Mattie's doctor spoke to me about hydrating Mattie during the day, but I gave that a lot of thought, and realized this physically wouldn't be practical for me. There is no way I can balance Mattie, carrying him around, and the IV pole. Those of you who know Mattie, even with a cast on his leg, know that he rarely sits still. Case in point, today he had me carrying him up and down the stairs several points during the day, because he gets tired playing in one place. It is hard enough transporting him, and I know my limitations moving an IV pole around in my home. So for the moment, I feel it is safer to give Mattie hydration at night, despite the fact that it comes at a huge cost to Peter or I.

Mattie kept me hopping today. He was visited by JJ (our resident Jack Russell Terrier). We learned today that JJ shares Mattie's affection for cheese. Mattie was into non-stop play. I tried to keep up, but frankly I have very little to give at this point, and knowing that I have so much still to help Mattie with as he has another major surgery in June, I feel the great need to conserve my energy. Mattie and I played with his suspension bridge, we did puzzles, we read books, we played with his trains, we made up some games, and even watched a video. This afternoon, I felt like I had to lie down, so Mattie and I went to my bed, and he watched a video, and I attempted to close my eyes. But that did not last long because the hospital called me to schedule Mattie's May and final scans. After that call, shutting off was no longer an option for me.

Mattie refused to go for a walk today or leave our home. Fresh air did not interest him in the least, so it made for a very LONG and taxing day at home. When Ann called me in the afternoon, I gave her a mouthful about my day, and we joked about me using a number to describe my day, similar to the scale that hospitals use to manage pain. But true to form, Mattie wouldn't allow me to talk for very long on the phone.

We want to thank JP, our neighbor, for giving Mattie his favorite pizza and pasta last night. It made for a wonderful lunch today. When Peter came home this evening, Mattie changed his mind and decided to go outside for a walk with him. Mattie waited with Peter until he saw my parents coming to our front door. Mattie was very excited to have, as Peter and I call it, "fresh blood," to talk and play with. Mattie was super animated tonight, and even joined us at the dinner table and actually ate. We can't thank Beth E. enough for an incredible dinner from the Cheesecake Factory as she even got food for my parents. Mattie loved it and my parents appreciated you including them. After a long travel day from Los Angeles, they really loved the opportunity to eat with us and catch up. Mattie made some gifts for my parents last night out of beads, and this morning I helped Mattie complete the project. So he was very excited to see their reaction and to also play with them after dinner.

As we head into Wednesday, I need to pack up things tonight because Mattie is getting admitted for his FINAL dosage of Methotrexate. Peter and I have decided that I would stay in the hospital Wednesday and Thursday night with Mattie, and then Peter would stay on Friday and potentially Saturday night. We did learn today that Mattie's lung surgery is scheduled at Georgetown Hospital on June 15. Peter and I are still assessing our surgical options, but at the moment, we felt it was important to get on the surgical schedule, because as soon as Mattie's body is able to qualify for surgery, he should have it. We do not want these lesions lingering in his body for any longer than possible.

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "Wow, another really long day in the clinic. Thank goodness for the help provided by Jessie and Jenny; they certainly kept things fun for Mattie. Mattie continues to be full of surprises when it comes to reactions to treatment; it is a good thing you are so sensitive and observant to his physical and emotional state so that you can catch these reactions early on. Thinking and planning ahead for the central line post surgery is also a really good thing to do; I feel for those who do not have a parent or caregiver who is as active an advocate as you clearly are."