Cherry Blossoms Festival Day

Sunday, April 5, 2009

Quote of the day: In honor of the Cherry Blossoms Festival in DC today

"Spring blossoms - the cherry blossom, plum blossom, peach blossom - suddenly appear on seemingly dead branches, heralds of the coming spring. They represent the gentle, almost unnoticed flowering of enlightenment, the surprisingly quiet recognition of the Buddha-mind. These spring blossoms appear only after the hard, lonely winter of meditation and spiritual practice, yet when they peek forth, their appearance is natural, effortless. Spring blossoms are the new life that emerges from the dead branches of the little self, they simply emerge when the limited ego has passed through its seasons and withered away." ~ Anonymous


Mattie woke up this morning and appeared to be hungry. He had his oatmeal and even some eggs. But that was the last time he ate for the day. It went down hill from there. On Thursday, as we were preparing for our pending discharge on Saturday, I asked the medical resident to let our attending physician know that Mattie would need IV kytril at home for the weekend. She assured me she would tell the doctor. However, my message did not get relayed and needless to say I have no IV kytril to give Mattie. Mattie seemed to be fine on Saturday, so I did not give the lack of kytril much thought.

This afternoon, Liza (one of Mattie's favorite hospital volunteers) came over to play with Mattie. I was looking forward to her visit, because I had planned for over a week to take Peter to a spa for a massage. He wouldn't do this for himself, but I knew he wouldn't refuse it if I made the arrangements. Our day was supposed to go like this, going to the spa, a late lunch, and then an opportunity to actually look around the mall. Buying clothes for one's self becomes a thing of the past, when you are trapped between the hospital and home. So I think I built up this day, and never really prepared myself for the fact that Mattie could get sick.

At the spa, Peter had a massage, which lasted longer than my manicure and pedicure. Which was fine, because I camped out in the serenity room at the spa, and got to enjoy hot tea. Jasmine tea to be specific. The smell of jasmine is intoxicating and somehow transports you to a better place. While in the room, I got a call from Ann (our team Mattie coordinator and dear friend), who checks on me daily. I also called my mom, since I rarely get the time to chat with her. Balancing Mattie and phone calls is virtually impossible. Not to mention while at the hospital, I live in a fishbowl, with people popping in and out of our room. Not conducive to personal phone calling. After Peter's massage was done, he came to get me, and I could see that his face looked more relaxed. It was a beautiful sight to see. It won't last long, but I am happy I was able to accomplish this for two hours.

We then left the spa and headed to lunch. We had just sat down at the table, and mind you we were starving, when my cell phone rang. Liza called, and she did the right thing, to tell me that Mattie was vomiting. I could hear Mattie was upset in the background, and I told Liza we would head home rather than returning in the evening. Peter and I jumped up, got in the car, and proceeded home. That sounds easy enough in theory, but it is Cherry Blossoms Festival day in DC, and traffic was horrible. What should have been a 20 minute trip home, was over an hour. While stuck in traffic, I just continued to get more and more agitated, thinking that I should be home to help Mattie and assess the situation, but there was no way I could get there. I was driving myself crazy, and probably not doing much for Peter either. I started the day with a headache, and it only got worse as the day went on. So while Peter was driving, I called Liza back to see what was going on. Mattie had settled down a bit, but still wanted us home. I at least was happy to hear it wasn't an emergency.

When we got home, we took Mattie's temperature. He was fine. But he did look pastie and a little listless. Mattie did not want Liza to leave right away, so Liza stayed an extra 30 minutes, while Peter and I walked to the grocery store to pick up some items. As the evening continued Mattie continued to vomit, and large quantities of fluid. The irony is he hadn't been eating or drinking anything since the morning. So I called Dr. Synder, Mattie's doctor. She assured me that Mattie would have access to IV kytril tomorrow. We had two options tonight, to either keep monitoring Mattie at home, or take him into the PICU. Going back wasn't an opinion we wanted to hear right now. Mattie gets IV hydration at home, so I can replace the fluids he lost through vomiting, and Peter and I finally rationalized with Mattie to take his oral Zofran (an anti-emetic). Normally Mattie would refuse an oral medication, but he was tired of vomiting, and at that point was willing to try anything to feel better. Good move Mattie!

Peter and I want to thank JP, our neighbor, for dropping off Mattie's favorite Dunkin Donuts this afternoon. That was so thoughtful, since in our neck of the woods, locating vanilla frosted donuts is like looking for a needle in a haystack. We also want to thank Eva K. for a lovely dinner from the Cheesecake Factory. It was funny, because this is the restaurant Peter and I were at today, before we had to get up and leave. So Eva and I must have been on the same wavelength. Thank you for a very generous dinner and cheesecake! As I am typing tonight's blog, Mattie is watching a Scooby Doo marathon on TV. It couldn't have come at a better time!

On Monday, Mattie heads to the clinic for a MTP-PE infusion. So we will be in the clinic for most of the day.

I would like to share a message I received from my friend Charlie. Charlie wrote, "Wow, what a day. I am so glad it was special for Mattie but I am sure it was completely exhausting for you and Pete. How wonderful though of all those people to come and share their time, often their precious time off from the hospital with Mattie. I do think you are "spot on" about why Mattie insists on helping; while the results can be frustrating for everyone, he feels it is necessary to assert his independence and growing self reliance which bodes well for his future. So while things may not always go well, it may make sense to try to plan for Mattie to help in the future, by trying to select tasks where he will be successful. Think of it as mental/emotional therapy to go along with his physical therapy."

I end tonight's blog with a song Charlie sent me today. I had heard it before on the radio, but hadn't thought about it in a while. Mostly because I heard it before Mattie was diagnosed with cancer. The song is entitled, Sarabeth, and is sung by Rascal Flatts. This song is used in a fund raising radiothon for St Jude Children's hospital. The video is very touching, and left me crying. If wonder if others have this same reaction? My hunch is the answer is YES.

http://www.youtube.com/watch?v=JhnU9IYTD9c