Sunday, February 8, 2009

Sunday, February 8, 2009

Quote of the day: "Home is not where you live, but where they understand you." ~ Christian Morganstern

Charlie wrote, "In yesterday's blog I felt a lot of emotions about home; going home versus not going home and things being easier at the hospital than at home. Sometimes the support we get from friends, caretakers, and others is so important that in our hearts we really feel separation and anxiety when leaving them behind. This is even though the place we are headed is one where we've always gone and look to for respite. So it is, I think now for you and Pete. With all you are facing daily, the familiar surroundings of home, as wonderful as they are, lack the essential support of those you've come to rely on. Home is essentially split now between the physical place where you find familiar surroundings (physical home) and the hospital where you have an "emotional" home. No matter which one you are in, part of you needs the other place. This is understandable but difficult and another transition to be managed on multiple levels each time. Mattie too, feels this and it comes through in the blog. I think that a part of you will always feel both positive and negative about the hospital anytime you have to go there in the future."


Mattie made it through the night without getting sick to his stomach, however, food completely disinterests him. This is no surprise considering the intensity of the chemo he had this week. It will take time for him to recover. Peter stayed with Mattie last night and told me that Mattie was up a few times, but by 7am, you just couldn't keep Mattie in bed. Mattie wanted to head downstairs to play. Mattie entertained himself for a bit, and he was very motivated to get dressed and leave the house since he had a playdate with Alex, his preschool buddy. Before we headed out, we made sure Mattie got his first dosage of G-CSF. G-CSF (granulocyte-colony stimulating factor) is an haematopoietic growth factor. It stimulates the bone marrow to produce more white blood cells. Growth factors are special proteins which are produced naturally in the body. They can also be made as a drug. One of the main side effects of chemotherapy drugs is a reduction in the number of white blood cells. This makes your body less able to fight infection. There is a risk that Mattie could develop a serious infection, which might have to be treated in the hospital, which is why G-CSF is given to Mattie to stimulate the bone marrow to produce new white cells more quickly after chemotherapy. This can shorten the period during which he will be at risk of developing a serious infection.

Mattie enjoyed his time with Alex. They did all sorts of creative projects, building, and had lunch together. They made some beautiful clay hearts for Valentine's day. Mattie's preschool teacher, Margaret, dropped off this fun activity for Mattie and Alex to do together. The hearts are lovely! Mattie looks forward to painting the clay. They did spin art as well, and of course Mattie's favorite, Legos. Julie, Alex's mom, told me that Mattie spent some time petting and caring for Sophie, their West Highland White Terrier. I found this interesting, because I think pets are so important and therapeutic for the young and the old. I was so happy to hear about this connection, and this is making my mental wheels turn to find ways to get Mattie to interact more with animal buddies. I think having an animal around could inspire Mattie to get up and walk more! Julie and Rob gave us a beautiful gift today of several hours to ourselves. THANK YOU for being such good friends to both of us!

Peter and I went out to lunch, and sat in a solarium of a local restaurant. We even opened the windows next to where we were sitting. The weather in DC was beautiful again today, and since we are both usually couped up inside, and rarely get fresh air, we really enjoyed this opportunity. You don't realize how much you miss your freedom to walk around and smell fresh air until you can't have it anymore. Today, I had the pleasure of having e-mail and phone communications with Lana and Marilyn (both were teachers of Mattie's from Resurrection Children's Center, his preschool). These ladies are on a mission to help me track down the right phosphorus supplements for Mattie. In fact, Marilyn called me while I was having lunch and we had a delightful conversation. She spoke to her pharmacist personally for us, who is willing to mix up the correct compounds and dosages of phosphorus for Mattie. The phosphorus supplement the hospital wants us to get is no longer being made. Do you see a trend here with us with discontinued medications? First it was Zinecard (the heart protector medicine), then Vistaril (the antihistamine), and now neutrophos which is impossible to get! Marliyn educated me about compound pharmacists, professionals trained to mix drugs to meet the unique needs of a patient. Fascinating! Thank you Marilyn for connecting us with your pharmacist and I appreciate all the efforts Marilyn and Lana put into this today. I will find out from our doctor tomorrow what dosages of phosphorus Mattie actually needs.

Peter and I had a nice lunch together, and of course talked about all sorts of things. We are basically having trouble planning our future and our summer. We have no idea what the summer holds for us, but we feel like we need to go on vacation. It is complicated, because where ever we go, we need to have access to a major medical center, since Mattie will need to receive MTP-PE throughout the summer. Peter and Mattie want to go to the beach, and though I hear what they are saying I have a lot of fears about this. After lunch, Peter and I went for a walk at a nature center in Alexandria. Again, walking around outside, may sound so mundane to many reading this blog, but walking for us now is like a special treat. It is a big adjustment to live life on the outside again, and I equate this in some ways to people living in prison. When you are released (prison or a hospital) there is a big adjustment, because the way you have been living your life in confinement, doesn't equate well to the outside world. Which is why I think for both populations, we want to run back to where we feel safe, understood, and comfortable. Now for me to say this is a huge statement, because I DON'T like hospitals. I don't care for their smells, how they look, the equipment, etc. On our walk today, Peter talked to me about bracing ourselves for the future and when Mattie's cancer will reoccur. I have heard enough from osteosarcoma professionals to know that with multifocal osteosarcoma it is a question of when and not if. I know what Peter is saying is true, but I can honestly say this is not a topic I can think or talk about. So he got the message that he had to change the subject with me. This is a subject matter than pains us both deeply.

When we got back to Alex's house, Mattie was having a great time. He was eager to show me what he created, and I could see that Sophie and Mattie were sitting close to each other on the floor. I had the opportunity to chat with Julie, and Peter with Rob, and then Mattie was getting tired and wanted to head home. When we got home, JP, our neighbor came by to visit and dropped off pasta with shrimp and pizza for Mattie. It is my hope Mattie will eat something. But I also know not to push it! Thanks JP! I spent the evening doing laundry and straightening things up around us. Mattie is watching the movie, Babe, with Peter, but we still have the sunday event of a central line dressing change ahead of us. God give us strength. I am beginning to despise sunday evenings! Before sundays meant the start of a work week, but now sundays have a whole new meaning.

On monday we will head to the Lombardi clinic for a check up and MTP-PE administration. Whitney has agreed to work with us on mondays. Whitney is Linda's former childlife intern. Whitney is a wonderful person and relates well to Mattie. So Whitney will be working three hours for us every monday. Whitney is meeting us at the hospital tomorrow, and I hope this is the start of a productive and consistent relationship for Mattie. I end tonight with a quote Liza M. sent me this week. This quote hits home to me, because I see the message being operationalized each day in myself and in all those who support us. "Good actions give strength to ourselves and inspire good actions in others."