Friday, October 24, 2008

Friday, October 24, 2008

Quote of the day (Thanks Susan S.!): Life is like a rainbow. You need both the sun and rain to make its colors appear. Your rainbow colors shine brilliantly.

Mattie woke up a couple of times during the night (thursday). He was up from 11pm to 1am, and then was up again at 4am. His 4am awakening was because he was hungry. Can you guess the food he requested? If you guessed potato chips, then you win a prize! This is the food of choice for the week. At 4am, we ran out of potato chips (mind you they have to be plain potato chips and made by Utz). So literally Peter hit every vending machine in the hospital until he hit the mother load of chips. This would be almost hysterically funny, if it wasn't happening to Peter at 4am. I think Peter gets major Daddy points for this potato chip search and rescue operation!

Since Mattie was up for quite a bit during the night, it made sense to me that he did not want to wake up this morning. However, Mattie's PICU nurse kept checking in with me this morning, despite the fact that she knew Mattie was asleep. Her constant checking got to the point that I got worried that something was wrong with Mattie. You know where your mind can run, especially after a major surgery and being on all sorts of pain meds. So I got myself so worked up about this, that I finally went over to Mattie and called his name and rubbed his arm, until he looked at me. Once he acknowledged me, I let him go back to sleep. Eventually Mattie woke up and was hungry. You probably see the trend now, he woke up and wanted his potato chips! While he was eating, Mattie had a visit from Anna. Instead of giving her a hard time, he quickly came to the conclusion that he wanted to get up and walk. Anna, Mattie's nurse, Julia, and I helped Mattie up. However, I noticed once out of bed, Mattie did not want to go out of his room into the hallway. We tried to figure out why. We thought about fear, being tired, in pain, but then it dawned on me. Maybe he did not want to leave the room because his back was exposed, since I can't get his PJ top around his body. He had pants on and his top draped over his front, but he did not want to go out the way he was, he was embarrassed. So I finally asked him if he would feel more comfortable with a blanket around his shoulders, and he seemed to embrace that idea, and was then eager to walk in the hallway. Mattie literally walked from his bed throughout the hallway, where he met up with his wheelchair. He did a great job, and did not even need more pain meds to do this. Mattie then had a brief visit to the childlife playroom, where he showed Julia all of his art work. Julia is a PICU nurse and I got the feeling that she really enjoyed meeting Mattie today. You have to understand that a PICU nurse deals with crises and very ill children. Many of these children are either unconscious or at least too ill to really interact. Though Mattie is a PICU patient this week, there is nothing quiet or slowed down about him. He kept Julia busy today with running back and forth to the playroom, and then doing laps around the hallway. However, she was a good sport, and I think by the end of the day, she had great respect for Mattie. I don't know, but Mattie has a way of making friends. All the nurses seem to be very fond of him. Perhaps they feel this way about all their patients, but they have a way of making Mattie feel very special.

My parents and I went to have lunch together at the hospital today. Thanks for a great lunch! It was nice to leave the room for an hour, since by 1pm, I felt like I was going to pass out. Thanks Whitney, Lesley, Jenny, and Jessie for making this possible. When I got back from lunch, I found all "the ladies" in Mattie's room. They had built a cardboard box structure, and fans out of popsicle sticks. In addition, Mattie started blowing bubbles too, and all of us got a kick out of him. We started using his popsicle fans to redirect bubbles around the room and into the hallway. It was a sight to see. All of us were on the floor, fanning Mattie, and I agree with Elizabeth (an art therapist intern from GW!!!), Mattie looked like he was surrounded by a "fan club." See some of these pictures below.
Mattie, Jenny, Jessie, and Elizabeth

While Jenny, Jessie, and Elizabeth were visiting, they gave Mattie a scrap book/journal. It is our hopes to save Mattie's pictures in this book, and perhaps write a story about each. Thank you for this lovely gift. Also they bestowed on Mattie a personalized autograph picture from Mickey Mouse, as well as Mouse ears and a wonderful stuffed Mickey Mouse pirate animal. I am not sure how they got these special treats, but we all love them! They are always thinking of ways to get Mattie engaged and smiling. Sometimes easier said than done.

This afternoon at 3pm, Mattie was very eager to attend the childlife science activity hosted by Chris (Chris helped make gak with Mattie yesterday). Chris is a Georgetown student and member of the chemistry club. However, in order for Mattie to participate in Chris' experiment this afternoon, he had to find a nurse who would be willing to escort him to the playroom. Because Mattie is on a monitor and on pain medication, he is not allowed off the unit without a nurse. Fortunately, I ran into Miki (one of our amazing Hem/Onc nurse who has helped me many times!) and she agreed to go with Mattie so he wouldn't miss out on the ice cream experiment. Chris and his group planned two experiments. The first one was making vanilla ice cream using cream, vanilla extract, sugar, salt, and the magic ingredient, liguid nitrogen. Mattie and his big buddy, Brandon, watched and were eager to sample the final product. The other experiment was very neat. Everyone got a chance to take a live rose and dip it into liquid nitrogen. After 20 seconds the rose petals froze to the stem and then using the stem of the rose we struck the rose against the floor. The rose petals literally broke in many pieces, almost like breaking a glass on the floor. We were all fascinated with this and we all just wanted to continue "breaking" roses. Though Mattie loved his rose so much, he refused to break it or dip it into liquid nitrogen. So we took his rose back to the room and put it in water. Below you will see some pictures of this great activity. Chris also asked for our permission to put a picture of Mattie doing one of these experiments in the chemistry lab. So Mattie is getting around Georgetown's campus!

Is Chris stirring a witch's brew or making ice cream?


Brandon (Mattie's big buddy) and Mattie enjoying ice cream! In fact they both had two cups full of ice cream. The best they both ate all week!

Watching all the fun activites were Miki (Mattie's nurse), Grammie, Toni (Brandon's mom), Dr. Gonzalez, and Margaret (Mattie's first preschool teacher and current tutor).

Whitney captured Mattie and I smiling during today's "break the rose" experiment. I think this picture speaks to the power of the human spirit. We have been through so much this week, yet for a minute everything was okay in the world, and Whitney captured it!

Mattie dipping a rose into liquid nitrogen!

After the experiments were over, we went back to Mattie's room. Mattie was then greeted by Dr. Bob Henshaw. Bob answered our questions and talked about how we will taper off Mattie's pain meds, so that he can hopefully be discharged on sunday. Bob and Mattie started joking about Sparky. Mattie was surprised that Bob knew that Mattie called his central line, Sparky. Bob told Mattie that he has spys around the hospital that let him know how Mattie is doing. We all cracked up with this. Mattie let that sink in and he said, really, well if you do, then what is Sparky's middle name? Lord knows what Mattie is talking about, because it was news to me that Sparky had a middle name! Any case, I asked Bob who would be removing Mattie's perineural catheter on sunday. Bob reflected on this, and was going to say the surgical resident, but then asked Mattie if he wanted him to do it. Mattie said yes, so Bob agreed to come to the hospital on sunday to remove the pain med catheter and the stitches. I don't know about you, but I don't know many doctors willing to come in on a sunday, when they are not on call.

During the afternoon, Mattie had a special visit from Margaret. Margaret and I have been through a lot together. She was Mattie's first preschool teacher, and she came into our lives at the right time. Mattie and I both learned a lot from Margaret, and I admire Margaret and her teaching abilities. Over the years, Margaret and I developed a close friendship and it means a great deal to me that she is willing to work and tutor Mattie this year. Before Margaret left the hospital today, she shared several gifts with us. She gave Mattie the cutest frankenstein filled with candies for halloween. Then Margaret gave me some tea (the name of the tea was "calm," very appropriate no?), chocolates, and then handed me a beautiful silk pouch with dragonflies on it. When I opened up the pouch, I found a most exquisite and delicate silver trinket box. Inside the box was a stunning silver rosary that Margaret's mom purchased from the Vatican in Rome. I consider this a very special gift, for many reasons. First of which is because Margaret is dear to me, but also because Margaret recently lost her mom (about a year ago), and to me parting with such a special item that belonged to her mother means something very significant to me. I will carry Margaret and the spirit of her mom with me each day, during this cancer journey. Thank you Margaret for coming today, and participating in the experiments with us, and for sharing a part of your mom with me today!

Thank you Carolyn Coker for the wonderful dinner tonight. You sent us a feast of Italian food. Mattie was thrilled to see the spaghetti and he even broke the potato chip routine to have some. The chocolate cake was wonderful. Everyone this week is helping keep my chocolate addiction at bay this week!

I want to share some e-mails and letters I received today. The first e-mail I want to share comes from Carrie, my TA. Carrie wrote, "I met Janet M. today at my office; she brought a beautiful plate of homemade brownies to donate for the Bake Sale tomorrow. Also, several of the Master's level students have given me cookies and brownies and one Doc student brought cookies by my apt this morning. I still have some more coming in tonight! So many people are so giving and generous and I love being a part of the receiving end; it truly brightens my spirit! It was a pleasure meeting Janet, she had only wonderful things to say about you and how she remembers when you were pregnant with Mattie and that her son is Mattie too...I can tell she really loves you and is thinking of you and is very touched by your blog. She just kept saying 'anything I can do I would do for Vicki, I just want to help.'"

The second e-mail comes from Tamra B. Tamra is a SSSAS mom at the upper school. Tamra wrote to Mattie, "We hope and pray for you everyday. And we wanted you to know that we live a couple of blocks from your doctors at GTown. Please tell your mother and daddy and grandparents and friends that we would welcome anyone on your "team" at our home, day or night for a respite, a soda, a dinner, a shower, a place to gather in groups when you spend some time at the hospital or simply a place to be closer so they don't have to go all the way home." Thank you Tamra for your support and such a generous offer.

Jane P. (a RCC mom) wrote us a beautiful letter last week. Jane wrote, "The Mattie helpers are like an army or a group of undercover special agents. There are a lot of us, and not just locally but all over the place. We will all be pumping up the prayers today and tomorrow. God will not know what hit him! We're going to be praying non-stop and I pray that somehow you will feel our prayers like a blanket wrapped around you." Thank you Jane and for the wonderful muffins and gift card!

This week, I received a letter in the mail from a doctoral student and friend at GW. Melissa S. wrote, "I have a very clear memory of you pushing two year old Mattie in a stroller by the Jefferson Memorial. He had the cutest little blue docker type shoes and was just so sweet and darling. It crushes me to think of the pain that he is now having to endure and the torture you and Peter are having to endure as you try to help him, advocate for him, and protect him in whatever ways you can. I now check you blog daily. I've always been amazed by what an amazing researcher, counselor educator, and professional advocate you are. Now through your blog, I've gotten to see what an amazing mother, wife, daughter, and friend you are too. The ways you are able to work through each unique problem each new day astounds and inspires me. The fact that you are able to articulate it all so clearly, humbly, and honestly is truly such a gift. And the love and hope that exudes each entry is just breathtaking." Thank you Melissa for your kind words, they mean a great deal to me.

On the electronic front, we want to thank Ms. Pollak and Teresa H. for your lovely e-mails and Lorraine and Susan for your e-cards. I want to thank you all of you who are baking and participating in tomorrow's Team Mattie bake sale at Episcopal High School. I have high admiration for all of you. I understand why Peter and I stay up 24/7 to handle Mattie's issues, but what I keep asking myself is what keeps the rest of you motivated? I am not sure I know the answer, other than you are all special people and God brought each of you into our lives for a very specific purpose. Thank you God for these gifts!