Sunday, July 5, 2009

Sunday, July 5, 2009

Quote of the day: "Love is the strongest force the world possesses, and yet it is the humblest imaginable." ~ Mahatma Gandhi

Though we were staying in a hotel room for the last two nights, all of Mattie's medicines and IVs came with us. This should give you some feeling for what packing was like for us. We had to bring a cooler with us too, that we constantly kept filled up with ice, so that the refrigerated medicines could stay cold. Thankfully that worked well, and thankfully Peter is ingenious and figured a way to hold the IV fluid bag over Mattie's head at night (since this IV runs through a gravity drip, and must be held up high enough over Mattie's head to work), since we did not bring the IV pole. Peter literally tied a string to an air vent in the room, which was near the ceiling, and the bag hung from this string. It worked like a charm, and Mattie successfully got his fluids at night. Mattie woke up naturally at 11am today, which was great, since we had to check out at noon. While I was getting Mattie ready for the day, Peter carried things to the car. I asked Mattie if he wanted to play by the pool this morning before we left, and he seemed amenable to that. We brought a box of Legos with us, and Mattie seemed determined to work by the pool on this project. When we got to the pool, I settled him in, and we ordered lunch. I am happy to report that Mattie ate all his lunch!

When Ann's children arrived at the pool, Abigail, Michael, and Katie came over to say hello. They wanted to know what Lego he was working on, and Mattie seemed okay at that point. However, as more people showed up at the pool and more kids were around Mattie, I could sense his level of agitation rising. He did not want to work with others on this Lego set today, like he did yesterday. So Peter wrapped up all the pieces, and tried to redirect Mattie. However, Mattie was getting moody, and I decided to take him for a walk on the property to change his scenery and to discuss what we could do to make the environment by the pool better for him. After all, my main goal was to encourage Mattie to participate socially with the other children, and if there was some information or insights he could share with me that would help him, I wanted to know about it.

We had a nice walk together, and were away from the others for about 30 minutes. When we got back to the pool, Mattie was eager to find Ann and Abigail, and he wanted to tell them about some of the things he saw on his walk, particularly about a playground. Mattie also seemed to enjoy watching Dr. Bob and some of the other kids going down the water slide, and we moved Mattie closer so he could get a better view. In fact, Abigail and Jackson (Liz's son, a friend of Ann's), sat with Mattie watching how people slid down or got stuck inside the water slide. In typical Mattie fashion, he shied away from the camera, and Abigail also followed suit. Though Abigail likes taking pictures typically, when she is with Mattie she adopts his strategy. I think it is one of Abigail's ways of relating to Mattie, it is something they share together and laugh about.

Left: Abigail, Mattie, and Jackson. Mattie can literally put his right leg over his head these days, which isn't good for his hip, and Anna (Mattie's PT) and I are working on reminding Mattie not to do this. Because such a flexible hip extension will make it harder for him to relearn to walk. You can see in the picture that Abigail is also doing the Mattie signature pose, with the right leg covering his face.

Right: Abigail, Mattie, and Jackson! Avoiding the camera at all costs! Jackson is smiling, but I have a feeling if he hung out with Mattie longer, he too would be following suit and would be avoiding the camera.

Pretty soon thereafter, Mattie wanted to leave and go home. I am not sure how the other kids felt about this, since they really were trying their hardest to engage Mattie. But I have to respect when he has enough, and Peter and I packed up things and headed to the car. On the car trip home, there were VARIOUS moods and attitudes within the car. Mattie was edgy, which of course translates down to our moods. We all feed off of each other. As I was sitting still for this 40 minute car trip home, I kept analyzing whether this weekend was worth it? Or better yet, is this how all our days will be like into the future? Filled with tension, conflict, and attitude? I certainly hope not, but it is moments like this when I have a hard time pulling out of the funk that our situation creates. Because Mattie is so moody, I am hesitant to do many things with him by myself. On the other hand, it is priceless to see him smile with Abigail and Jackson, and certainly it was lovely to see his face light up with the fireworks, but all of this comes at a large cost to Peter and I. At this point, we have no more money in our emotional bank account, so this makes it harder each time to replace our amazing deficit. Also we can't afford a deficit, because of Mattie's daily care that is needed to sustain him. So it leaves us in a quandary.

Once we got back home, we started the unpacking process. While unpacking, Mattie was very focused on his Lego carousel. I still have parts of this 3500 piece set all over my living room! I landed up doing three loads of laundry, and thanks to JP, our neighbor, I did not have to worry about dinner. Thanks JP for bringing us dinner and welcoming us home tonight! It was greatly appreciated.

As we head into Monday, Mattie will have his clinic appointment to receive MTP-PE. I have no doubt it will be another long day! However, I am saddened to report that Dr. Kristen Synder, Mattie's oncologist, is leaving Georgetown University Hospital. She let me know about this over a month ago, but I promised her I wouldn't let others know until she told them. So this will be our last Monday appointment, we are switching clinic days to Thursdays. Though Kristen will be working at the Federal Food and Drug Administration, she will be working at Georgetown one day a week, Thursdays. So happily to keep working with Kristen, we are changing our clinic appointments to Thursdays. None the less this is another loss for us, because we have been used to having Kristen around five days a week. However, I know she is only a phone call or e-mail away.

I end today's posting with a message from my friend, Charlie. Charlie wrote, "Vicki, thank you for sharing the ride (blog) with us and I know we all hope that the sharing helps you even as it teaches life lessons to your audience. We are all riding the emotional coaster along with you. Sitting at the top of the loop doesn't take away the feeling that one had after the headlong rush downward the day before. Even with that said, I know that without the good days, the bad ones are impossible to survive. As you go along this process of moving toward health and healing, I hope the bad days become less frequent and less intense as well. I think what you have done with and for Mattie is remarkable. I am so impressed by his ability to be his own spokesperson, to explain what cancer is about in an upfront, unapologetic manner. I know this will be a strength for him as he continues to heal and to connect with other children. Shopping, like many other things, is a distraction from what is the central focus of your life right now. It is hard to let go and enjoy something like that when the reality of your existence intrudes. Although it was a more positive experience, I am sure it was difficult to sit and enjoy leisure reading when you were preparing for your doctorate; there was a feeling that taking time away from preparation was somehow wrong. Experience shows though, that the break makes us more productive, focused and better able to deal with the problems when we return to the task, so whatever you can find that allows you to temporarily escape from "cancer thoughts" is good and should be welcomed."