Tuesday, May 26, 2009

Tuesday, May 26, 2009

Quote of the day: "A friend is someone who understands your past, believes in your future, and accepts you just the way you are." ~ Anonymous

Either Peter and I are getting more tired, or today was simply a non-existent day. I felt like I was in an absolute fog all day long. Mainly because I never left the floor and I was dealing with one issue after another. So though Mattie was very stable today, played, and left his room, it was not a very good day in my book. When Peter and I have to brainstorm surgeries and the "meaning" (keep reading, I will explain) of Mattie's life, it leaves me upset, frustrated, and sad. In fact, do you think it is possible to be so upset that you can't pinpoint it to just one thing in your day? It was the whole day.

Before I tell you about our day, I do want to comment that Mattie and Erin had a wonderful time together last night. Erin is one of Mattie's HEM/ONC nurses. Erin encouraged Mattie to draw pictures for her while I rewrote the blog. Mattie drew five pictures for Erin and on the back of one of the pictures he wrote, "I love you!" Mattie came up with this on his own, and it was very touching, because I think he is truly fond of Erin. To me these nurses are simply angels. Despite their long hours and the difficult work they do (seeing kids and their families cope with cancer), they always have a smile on their faces and want to help. In fact, at noon today, Katie (one of Mattie's nurses) came in and asked me if I had lunch. If not, she was going to get me lunch. I was truly touched by Katie's concern and support. To me this goes beyond the call of a job description, but is the perfect illustration of the amazing women caring for Mattie. I am beginning to see that being an oncology nurse is not just a profession, but a way of life.

Mattie did not wake up today until after noon. It makes perfect sense to me that he would wake up so late, since he doesn't go to bed until 2 of 3am. While Mattie was sleeping, several people came by such as Jey, Mattie's "big brother," and Dr. Biel, Mattie's psychiatrist. Linda also stopped by and told me that the movie, the Pink Panther 2 was going to be shown in the childlife room or Mattie's room if he should want to see it. On some level Mattie sensed Linda's presence in the room, and he started to stir. Within 10 minutes, Mattie was up, dressed, greeted Miki (his wonderful HEM/ONC nurse), and had his vitals taken. He was motivated to get to the playroom. I considered this a very positive sign.

Linda watched the movie with Mattie and they had a long play session. Of course Mattie was thrilled. During this time, I had the opportunity to do laundry, change Mattie's bed linens, and then meet up with Tanja for lunch. Tanja is a friend and SSSAS mom. She brought me lunch today, and we stayed in the parent lounge so I could remain close to Mattie if he needed me. I had the opportunity to learn more about Tanja's family and I enjoyed hearing about her family in Germany.

After I had lunch, Linda came to find me and let me know that Mattie needed me. When I got back into the playroom, Mattie was beginning another project. He wanted to create a beach scene. Jenny, one of Mattie's art therapists, brought up some sand from the clinic. Mattie placed the sand in a beautiful box that Linda gave him. Jenny created a stick character for Mattie, named, "Jenny," and I played the lifeguard at the beach. Jenny joined us for a while, but then had to go back to clinic, because there was a full patient load there. Mattie did not want Jenny to go, but he did understand she was needed downstairs. When Jenny left, I suggested to Mattie that Tanja take over playing one of the characters on the beach. Mattie was amenable to that, and clearly had to warm up to playing with a friend outside his "hospital" circle. Tanja was very patient and sat quietly until Mattie was ready to open up and allow her in. Tanja and Linda then took Mattie back to his room, while I was talking with Dr. Synder. Tanja brought many wonderful items for Mattie today, such as a kiddie pool, rubber bugs, moonsand (which apparently is a type of sand, where you can pour water on it, but it never gets wet), his own red towel, and lots of pool toys. Linda inflated the pool in the room and I hear Mattie had a great time. I at first was disappointed that I missed the action, but then I went to my camera tonight, and low and beyond Tanja took pictures for me. Check it out. I love the picture where it appears Mattie is washing an alien.

I really appreciated Linda and Tanja's time today. They enabled me to chat with Dr. Synder about Mattie's lung surgery. Peter and I would like to have a multi-disciplinary team meeting prior to the surgery, just like we had with Dr. Bob. There are many things I fear about the next surgery, and frankly such a team approach may help to ease my concerns. I am grateful that Dr. Synder is trying to make this happen, and I was also happy to hear that Dr. Bob is being asked to sit in on this team meeting. Since he is a crucial part of our team. Bob called me tonight and told me that surgeons are not used to having meetings, which was actually insightful to me, because this paints a consistent picture with what I am hearing at Georgetown.

However, I am feeling very stressed out and landed up taking out my anger on my mother today. Denise, our social worker, was present for this too, and I am sure my mom knows how I really feel, but of course later on tonight I felt bad for my actions. None the less, I live in a trapped cage, where I am not able to vent anywhere. I always feel like I am under a microscope with people waiting for me to have a nervous breakdown. However, as I told the clinical psychologist tonight who came to consult on Mattie's case... breakdowns are NOT an option!

Peter came to the hospital at 5pm, so we could both meet with the clinical psychologist who is working with us on Mattie's case. Linda stayed with Mattie, so we were able to talk freely. We chatted for at least 90 minutes and came up with goals that we would like to work toward with Mattie. I do think the psychologist heard our issues, and was very open to strategizing with us. But I have major concerns about all of this. I realize creating structure and routine are important for Mattie, but are they important or even feasible right now? Before a major surgery? Peter and I were talking with my parents about the session, and they helped me realize that nothing will be normal for the next month or so, so how on earth do you establish normalcy with routines if there is nothing predictable about his recovery process? Excellent point, and since I now consider myself an expert on Mattie, they are right. It is impossible to establish routines when headed for another major crisis. I can't control the pain, I can't control Mattie's reaction to pain medication, and Lord knows what other complication (which I don't like to think about) can arise from surgery. So with that I pause. In addition, the therapist asked us how much Mattie knows about his prognosis. We said he knows about his illness but not his prognosis. After all we can barely handle and come to terms with his 10% chance of survival rate, how do you explain this to a seven year old? I believe in being honest with Mattie, but this type of honesty is counter productive from my point of view. I think she felt this would spur him on to fight for his survival, to be more engaged with physical therapy, and the like, but Peter and I both had a visceral reaction to this. In addition, she discussed the importance we all have for "meaning" in our lives. I concur with this wholeheartedly, until she suggested that we discuss with Mattie something he wants to accomplish in his life (kind of like what he wants to accomplish in his life before he dies!). Well I kept it together, but I wanted to absolutely lose it over this discussion. This dialogue about losing Mattie is not productive for me right now. This is too raw, and I told her I have no idea what a seven year old would want to accomplish before he dies, I can barely think about that answering this question for myself, and I am NOT seven! I do think the therapist has some valuable ideas about structure and routine, and I believe she wants to help us. But right now I am not sure I am open to help. It takes as much energy as I can to muster to be strong for Mattie and help him 24/7. I have no doubt Peter feels the same way! Asking more of us now just seems unfair, and I go back to resenting the initial referral for help. I get the intention, but I assure you unless you walk in my shoes and have a child who is so sick, then you really shouldn't be judging me.

Mattie received his MTP-PE tonight around 6pm. Mind you Miki, Mattie's nurse, was checking all day for the medication's order as well as when it would be ready. Funny how a whole day can go by without receiving medication. I really dislike Mattie getting medicated at night. Things always seem worse at night for us. Sure enough 90 minutes after his MTP infusion, he developed rigors and intense pain. Thankfully Mattie's nurse gave him demerol and the side effects went away after about 15 minutes. Mattie is now up and alert, and just finished a cup of warm milk. Erin introduced Mattie to this last night, and he loves it. Excellent!

Mattie's counts remain at zero, so we have no idea when he will be released from the hospital. Peter headed home tonight once everything was stable here. Keep us in your thoughts and prayers. As the psychologist said today, we are dealing with acute crisis and chronic stress. I agree with this assessment completely!

I end with a message from my friend Charlie. Charlie wrote, "What a change Monday's blog was from earlier in the week. I am so glad to see Mattie's good nature return. I think you have it right on; he has very little control over his situation so he attempts to control what he can which would be his response to the situation and to you. It is all very frustrating and exhausting. It was so wonderful to see Mattie back together with his friend Abigail. Friendship is so critical to all of us; it is a feast for a hungry and tired spirit. So it was great to see them enjoying doing kid things together. I agree with you that Mattie knows how much you've done for him. While he can't normally vocalize that, his desire to marry you after all this trauma tells you that your relationship with him is intact and very strong; you've done an amazing job balancing his medical needs against his emotional ones. I truly admire what you have accomplished this year although I am sure to you it seems like you haven't accomplished much at all. I am glad you got to spend Memorial Day outside the hospital; I hope next year your whole family is enjoying it together."