Friday, March 27, 2009

Friday, March 27, 2009

Quote of the day: "Wherever you go, no matter what the weather, always bring your own sunshine." ~ Anthony J. D'Angelo, The College Blue

Mattie cleared methotrexate from his body at around 4am. His nurse, Katherine, came in to tell me while she was drawing blood at that time. Even at that hour in the morning, I knew what this meant for us. It meant we were going home. Peter got up at 6am, and started getting himself ready for day. Before he left for work, he took practically everything in our room to his car. So when I left with Mattie later in the day, I only had to worry about Mattie and a few bags. That made life so much easier!

I landed up waking Mattie up at 9:30am, because he was scheduled to have a physical therapy session at 10am. Certainly I could have left the hospital before his therapy session, but I feel therapy is important for Mattie, and I was more than happy to wait a few more hours at the hospital, so that Mattie could work with Anna. When Mattie woke up, he had his oatmeal and then willingly changed into regular clothes. I think he was excited to be going home.

Nicole, Mattie's great HEM/ONC nurse, greeted Mattie this morning and she took his vital. He then headed to the playroom to wait for Anna. While waiting, I helped him log onto one of the childlife computers. We went to highlightskids.com. Mattie loves playing several games on that site, as well as doing the hidden pictures. The irony is, I have noticed that practically all the volunteers know Mattie. I guess that isn't surprising, we are certainly there most days, but the fact is I don't know many of them. Several volunteers came over to watch Mattie play on the computer. In addition, a patient's mom gave Mattie a glazed donut while he was playing, and he was thrilled. He devoured that up! Nicole came to find me around 10am, to let me know that Anna was delayed and wouldn't be up until after 11am. Since Mattie was occupied, I did not mind waiting in the least. In many ways there is more excitement for us in the playroom than at home.

Nicole came to talk with me about the discharge process and as we were talking she asked me about Mattie's fingers. Particularly if he had been painting. I knew exactly what she was asking me. Like myself, she assumed Mattie's hands were dirty. However, they were clean. Mattie's fingers, toes, and rump have all been discolored or darkened in pigmentation due to chemotherapy. I noticed this change weeks ago and mentioned it to Dr. Gonzales, who assured me this can happen and once chemotherapy stops, Mattie's skin coloration will return back to normal. However, Nicole hadn't noticed this before and suggested I follow up with Dr. Synder about this. Since this isn't that common of a reaction. It was a good idea, and I did do this today. Fortunately everything is fine. But I agree with Nicole, the skin discoloration is disconcerting. If this is what chemo does to your skin, it makes you wonder what is going on inside the body.

Mattie was excited to see Anna today. He was motivated to walk again, and Meg was on board today to be his racing partner. Meg had a team mate today, Marla. Marla is one of Anna's physical therapy interns from the George Washington University. Marla is delightful, and I was saddened to hear this was her last day of her clinical rotation. Meg and Marla were a dynamic duo. You should have seen how they hammed it up, falling on the ground, and even falling asleep while Mattie was singing them a lullaby while racing. At one point, Anna and I were just hysterical listening to this while we were observing Mattie. Some how they make physical therapy, which can be a painful and stressful process, fun. Never under estimate the therapeutic power of laughter. Mattie is still working hard, but why not work hard, and also emotionally feel good about the process. I snapped some pictures today of the race. There were more obstacle courses today that Mattie really had to negotiate. But he did it quite well.

Left: Anna (in orange observing Mattie), Marla in pink, Mattie, and Meg. Clearly you can see Marla and Meg are doing very exaggerated moves.

Right: Anna is cheering on Mattie as Meg, Mattie, and Marla are coming to the finish line!

Left: Mattie using his reconstructed knee on his right leg to bend over and reach for a bean bag frog. It has taken quite a lot of therapy to build up the confidence to do this!

At the end of the race, Mattie got to pick out a prize. He chose two plastic trucks for his sandbox, which he was eager to try out when he arrived home. After physical therapy was over, Mattie was ready to pack up and get the show on the road. Linda helped us to the car. Linda and I had a conversation today about the transition that is happening in our life in May. The transition from our PICU life to our home life. Clearly Linda understands the complexity around this. Sure we will be happy to be home, but we are leaving behind an incredible support network at the hospital. This has been our home for eight months and with leaving comes a lot of apprehension. Linda discussed ways to manage this transition that were helpful to hear.

When we arrived home, Peter was home to help us. Peter worked from home today. Peter did most of the unpacking of things from the hospital and I helped Mattie get into the sandbox. He was thrilled to be outside and in his box, playing with his prizes he acquired from therapy. I ate a quick lunch and then headed out the door to visit Ann's parents. Ann arrives home late tonight from her family vacation, but I had promised her parents that I would visit them if Mattie got out of the hospital today. I wasn't going to let them down. Before I visited them, I bought Ann's dad some New York newspapers and stopped off to buy hot tea and pastries for her parents as well. It was another delightful visit. While I was at the assisted living center, Ann's mom received some phone calls, and it was wonderful to hear how happy these calls made her. It speaks to the importance of human connections at any age. After she got off the phone with one of her childhood friend's she relived some stories about this time in her life. I was happy to spend the afternoon with my newest hot tea buddy and to see Ann's parents enjoy the pastries together. As the afternoon went on, Tanja (a SSSAS mom and friend) came by to visit with Ann's parents and it was nice to meet up with Tanja too.

When I arrived home this afternoon, Mattie and Peter had been busy building with tinkertoys and knex. I am happy to say that Peter went out tonight with some of his friends. Peter is always hesitant to do this because he doesn't want to burden me with extra coverage time. However, I was happy to see him get out and clear his head. We all need this, and I know after I got back from the assisted living center I felt better than before I left.

This evening Mattie and I had a nice dinner together thanks to Janet Heddesheimer. I have known Janet since I was a student at GW, since she is the associate dean in the Graduate School of Education. I appreciate Janet's support and generosity, and for providing Mattie with his food of choice this week, bread and butter. We thank you for the tasty treats, and for the movie, The Blue Butterfly. This movie is based on a true story of a mom who helped her child overcome a life threatening illness. Mattie loved his Scooby Doo Easter card, and I know he will enjoy using the gift card to Pizza Hut that Janet gave him. Janet came up with a great idea, she is funding a way for Mattie to surprise Peter and I with a gift of a pizza. So with the help of an adult in his life, he will be able accomplish this surprise, and of course Peter and I will not let on that we knew about the gift card.

After dinner, Mattie decided to play with bowls of water and the syringes he has been accumulating from the hospital. He had a great time transferring water from one place to another with the syringe. He was placing various objects in the water to see which ones would float, I felt like I was watching a science lesson in school. Check him out!

We want to especially thank Chi Sigma Iota (CSI), the Rho Theta chapter at the George Washington University (the counseling honor society on campus). CSI sponsored a bake sale on campus, with the proceeds going to Mattie's fund. I want to thank everyone who baked for the sale, as well as volunteered at the sale. I especially want to thank Carrie Barone (my teaching assistant), Donna Paknejad (a former graduate student), and Tess Marstaller (a former undergraduate student) for their dedication, energy, and passion behind this sale!

I end tonight's blog, with two messages I received. The first one is from my mom. I appreciate the lovely e-mails I received today about my mom's e-mail to me. My mom wrote, "The title of one of Ernest Hemingway's most widely read books, "The Sun Also Rises" is symbolic of the struggle of two people dealing with the consequences of war and it so aptly reflects my reaction to seeing Mattie on your blog walking with his entourage on the fifth floor and displaying his gold medal proudly after "winning" his race with Meg. My heart skipped a beat and my spirits soared to new heights because our Mattie Sun Also Rises Again from his wheel chair where he has been recuperating for so many months to walk again like he did before all this happened."

The second e-mail is from my friend Charlie. Charlie wrote, "Hello from Newport News, Virginia--still too early in the morning. I managed to get on line this morning to read the blog and I am so glad that Mattie had a good day on Thursday. So much of how we react to things is our attitude and it is amazing how much more we can accomplish with a positive attitude. Four laps around the fifth floor is pretty amazing and I want to congratulate Mattie on that accomplishment. I think he will be back up on his feet and playing with his friends sooner because of his change in attitude. Anytime I miss a night's sleep now I think of you and just how exhausted you are and I wonder how you and Pete keep going. You are my personal heroes and role models for those days when I just don't feel like giving it 100% effort; then I realize what I could be facing and get going. I think of Mattie spreading sunshine and I try to keep a positive attitude because I can clearly see the difference between days when someone is positive and one when you are not. I wish you the energy to keep going and the faith to keep moving in a positive direction. I really hope you get some much needed rest on this next "space" at home."