Sunday, January 18, 2009

Sunday, January 18, 2009

Charlie wrote this to me today. "I know it is tough to think about going back into the hospital after so much time away. At least you are returning to a place where the staff understands and welcomes Mattie as a whole person and desperately wants him to get well. I hope that knowing all of us are once again with you and praying for Mattie to get to the LAST set of chemotherapy will help you find the strength to continue the difficult journey to remission."

Quote of the day:
"The only courage that matters is the kind that gets you from one moment to the next." ~Mignon McLaughlin

Charlie is indeed correct. Returning tomorrow to the hospital is painful. Not that our life was particularly normal the last three weeks that we were away from the hospital, but we did have some level of freedom that totally gets stripped away when we are inpatient. Thankfully though if we have to be in the hospital, we can be at Georgetown.

Mattie had another quiet day and he did not want to leave our house again today. In all reality that was okay, because it was freezing outside, and our DC neighborhood was in what I would call a lock down mode from the inauguration activities by the Lincoln Memorial. Wow! It is kind of scary when you can't easily leave or get back to your home! We want to thank Carrie for checking in with us today from Team Mattie and we want to thank the Doane family for making their way to the city today to drop off dinner to us. This was NO easy feat, since practically every bridge from Virginia into DC was closed because of inauguration security. Mike even called me, because he couldn't get close to our home by car, he literally was required to park and walk to drop off food. Thank you so much for doing this on such a cold day. Dinner was wonderful and Mattie is enjoying the special stars and stripes cookie, and of course the chocolate pastries were greatly appreciated. I must admit I did not know what a "terrible towel" was, so I had to ask Peter. In fact, the towel (which if you a Steelers fan, you know that this is a symbol of encouragement and loyalty to the Pittsburgh Steelers) inspired Peter and Mattie to watch some of the game!

Mattie and Peter spent the day playing together and they even accomplished a 500 piece puzzle. Mattie was very proud of this accomplishment. I on the other hand had an excellent excuse to leave our home. It was Ann's birthday. As most of you know, Ann is our Team Mattie coordinator. She does so much for our family from coordinating meals, the Team, and activities, to inspiring Mattie to move his body, and the list goes on. There was no way I could allow this special occasion to go by without celebrating with Ann. So today we had the opportunity to spend part of the day together. We had a wonderful time, and it is moments like this that I file away in my mental database and pull up and reflect upon during the difficult days ahead.

As I was driving home today, I ran into incredible traffic. What normally would take about 20 minutes, took me over 90 minutes tonight. The funny part is typically this traffic would have made me very agitated, but instead I called Peter while driving. Peter put Mattie on the phone and they spoke to me for about 30 minutes on speaker phone. Mattie told me about his day and then Peter said they were awaiting my arrival because.... and then Mattie piped in and said, "there is no one like Mommy!" Well do I need to say more? This was a great gift, and totally unsolicitated.

As I sign off tonight, Peter and I still have a dressing change of Mattie's central line to perform and to get him hooked up to his IV. We are also in the midst of doing a 24 urine collection so that the hospital staff can assess whether Mattie is able to get Methotrexate tomorrow. I also have to figure out what we need to take to the hospital so that we can attempt to be at Georgetown by 10am. Good luck with that! Thank you all for your continued support and for continuing to read the blog. This means a lot to our family.