Friday, July 31, 2009

Friday, July 31, 2009

Quote of the day: “Love and magic have a great deal in common. They enrich the soul, delight the heart. And they both take practice." ~ Anonymous

Mattie had another late night on Thursday, and I don't think I actually got to bed until 2am. My level of exhaustion continues to rise, and without much sleep, my migraine remains pretty consistent. Mattie woke up early and of course wanted to play. He is very focused on playing our restaurant scenario all week. I probably should elaborate on it for you, so you understand the level of fun and creativity he is having as we play our parts. In the scenario, Mattie plays Chef Mattie, but I am a chef too. My name is Chef Sunshine. Chef Sunshine is a piece of work, talks like Scarlett O'Hara, and cooks VERY bizarre things like roaches, spiders, and other bugs (you can see Mattie has gotten to me with his bugs). Mattie thinks I am absolutely hysterical when I talk like this. Due to the nature of what Chef Sunshine cooks and serves to people, it should be NO surprise that she has been reported to the health department. Our play scenes always involve a visit from the health department, a visit from the police, and of course Chef Sunshine's fast talking wit to get out of being fined or arrested.

At lunch time, Mattie and I walked several blocks to meet Peter for lunch. Peter suggested this, and Mattie was actually excited to have lunch out. A definite first! This was actually a meal where we all sat down for more than five minutes and ate and talked. We filled Peter in on our restaurant play scenario that we have been playing all week. Peter couldn't get over this bizarre story, and as Mattie and I were reliving the stories for Peter, we both were laughing. As Peter commented to me, he hadn't seen me laugh in a long time. So certainly in the midst of HOURS of play, there are good moments, and I wanted to make sure I reflected on that, but despite these good moments, it is hard to capture them and balance them when we are so tired and the demands of Mattie's care seems endless.

After lunch we walked back home, but it started to rain. I can assure you a wheelchair never moved so quickly through the streets of Washington, DC as it did today! Mattie was practically timing me. Not a great thing to do, when I am already wiped out. We got home, played more, and then packed up and headed for physical therapy. Today I brought Mattie's walker into clinic. It was quite a juggling act dealing with the rain, Mattie in a wheelchair, and dragging the walker behind me. At one point I wanted to just stop and scream, ARE YOU KIDDING ME?! We did make it to clinic and Mattie had a good therapy session. I took many pictures of his accomplishments today that I wanted to share with you.

Left: Mattie using his walker for the FIRST time in months!

Right: Mattie brought a rubber fly with him to his session. He had to walk to the fly, and then squash it with "Steve," his right foot.

Left: Mattie throwing a 3 pound ball at Anna, and Anna batting it.

Right: Mattie did a great deal with these large therapy balls. He rolled them with his feet, but he also picked them up, raised his arms and threw them.

Left: Mattie even tried walking up steps today. This was quite complicated for him, but he did try it. By the time the session was over, he did not want to move at all. Though he had a good session, he can direct many of his negative feelings about the process onto me. So I experienced a lot of snappy and nasty behavior post therapy. I have learned to put this all into perspective, but there are some days I can handle this better than others. Today wasn't one of those days, mostly because I am simply tired of ALL of this.

When Mattie and I arrived home, we got a call from Dr. Gonzales. Dr. Gonzales is one of the HEM/ONC attending physicians, she has been working with us while Dr. Synder is on vacation. Dr. Gonzales called to follow up on many of my concerns that I aired yesterday. The first of which was Mattie's stomach issues. Back in May, tests were run on a stool sample of Mattie's to assess for the presence of H. pylori, a bacteria responsible for peptic ulcers. Turns out that test was positive back in May, but additional blood work was going to be done, because I was told the stool sample test can produce many false positive results. Lovely! So since that time, each week I would ask about the blood test results. Each time, I heard no results were back. So finally yesterday I told Dr. Gonzales that this was ridiculous, and I wanted an answer because in my assessment Mattie has an issue, and it isn't being addressed. So today Dr. Gonzales found all the results, and indeed Mattie also has a antigen in his blood for H. pylori. So in essence he has an ulcer. Finally! Something to explain his symptoms. Mattie will begin treatment for an ulcer tomorrow, which involves being on two different antibiotics for two weeks, as well as taking prevacid. However, Dr. Gonzales feels the ulcer issue doesn't explain his lack of eating. So she would like to start Mattie on Megace next week. Megace is a man-made chemical similar to the female hormone progesterone. Megace is used to treat loss of appetite and weight loss in certain patients. It is either that or Marinol, which is a derivative of Marijuana. Given Mattie's sensitivities to things, we are opting against using Marinol. At this point I am desperate to get him to eat, but if this appetite stimulant doesn't work, then more invasive methods like a feeding tube have been posed to me.

This evening Mattie was invited to a play. Ann's daughters were performing and Abigail personally invited Mattie on Tuesday. Mattie THOROUGHLY enjoyed the play. His body was moving to the music and he really seemed engaged and having a good time. Mattie sat next to Jackson, who some of you may remember from our July 4th trip. Jackson is Liz's son, and Liz is a good friend of Ann's. Any case, the boys had a good time next to each other. After the play was over, we all went out to dinner together. Michael (Ann's son) came in our car, and Mattie and Michael had a wonderful time chatting with each other. Mattie had a prism in the back seat with him, and Michael was showing him all the neat things you can do with it. Michael is 9, but despite his young age I was impressed with how patient he was with Mattie and he couldn't have been a better assistant to have along (helped me with the wheelchair, closed the trunk for me, etc...). I told Michael I would hire him! He seemed very proud of this comment, and what instantly struck me is that helping others gives all of us a way to feel important, responsible, and connected to another human being. In any case, it was a wonderful to see the empathy, level of sensitivity, and concern Michael expressed toward Mattie, and it did not end once the car ride was over. Michael stuck with Mattie throughout the evening, helped him order his food, and then let me know what Mattie was able to actually eat.

Despite Mattie being surrounded by people who cared about him, mid meal, Mattie looked at me, and waved me over. By the time I got to him he was crying. He said he felt nauseous and sick and he wanted to go home. Mind you I was in the process of trying to eat. But tonight is not unlike any other night, where eating is an expendable chore. Ann and her friend, Liz, helped me get packed up, and assisted me getting Mattie to the car. So I left tonight pondering, is it worth doing these outings? It is worth trying to pretend to be normal? Clearly we are not normal, and seeing what other children are able to do and participate in, only further upsets me, because this is not Mattie's life, nor do I know when it will be. I have no answers to any of my questions, other than I continue to grieve for a life that no longer exists.

When we got home tonight, Peter gave Mattie Kytril (his anti-emetic). Peter stayed home this evening in an attempt to start cleaning out stacks of toys and things that have accumulated over 12 months. We have so many things, that it literally could take me weeks to sift through. I appreciate Peter making a dent into this project, but we have SO much more to do. However, in the grand scheme of things, do I care that things are piling up around me? I guess a part of me does since I am a highly organized person, but on the other hand, I am dealing with so many emotional things right now that just keeping it together is the best I can do.

We want to thank the Keefe family for their very generous dinner! We will be enjoying it tomorrow night! Thank you for thinking of us and for your continued care and support.

I would like to end tonight's posting with three e-mail messages I received today. The first is from my friend, Charlie. Charlie wrote, "Wow, what a full day on Thursday. I wonder how you kept going with so little sleep and such a full schedule. Mattie looked like he was fully involved and invested in what was going on in both physical therapy and in the art therapy rooms. I think you are right that Jocelyn is a great role model for Mattie. As much as we as parents would like to think of ourselves as our children's role models, unfortunately sometimes their experiences are outside our own and we cannot make the connection they need; how fortunate Mattie is to have someone like Jocelyn (and Brandon as well) to use as his models in this instance. Mattie clearly enjoys entertaining the other children in the clinic and it is wonderful of Bob Weiman to help Mattie gain the skills to be able to do this. I hope that you are able to find a way to ameliorate Mattie's stomach problems so that he is once again able to begin to enjoy eating and gain weight and health."

The second message is from Carolyn, a hospital volunteer who worked for Linda. The irony is Carolyn and I only met twice while Mattie was in the hospital, but apparently Mattie made quite an impression on her. Carolyn's message was deeply touching and I wanted to share it with you. Carolyn wrote, "I have been meaning to e-mail you for some time now, and hours before my organic chem final seemed as good a time as any. First let me re-introduce myself -- I was a volunteer in the Child Life department (when Linda's interns were Meg and Laura), until I came home to Wisconsin for the summer. (I have your e-mail address from the time when I put Mattie's picture in the GU Relay for Life slideshow.) I only interacted with Mattie a few times in the PICU -- I had the privilege of seeing a great magic show as well as prepping for the birthday party! -- but when Meg told me about your blog I hopped online to check it out. And now I can barely fit all I want to say into an e-mail of reasonable length -- or even put it into words. I wanted to let you know first of all that you have a loyal blog reader and Mattie supporter in Wisconsin! It's probably a bit boring by now to hear from blog readers like me that your strength simply amazes and inspires me. As a psychology major, I always love those little tidbits you throw into the blog too :)But why I'm really writing to you is to say how dramatically your blog has changed my perspective on my own future. I am hoping to be a doctor someday, and Mattie and the blog will forever impact me on that journey. Reading your blog puts a face and a story behind the hard sciences that seem so far removed from medicine. And I am certain that I will never forget Mattie, and your family will constantly remind me of why it's worth it to put myself through the long haul of med school. Perhaps even more powerful is how your candid writing has shaped my conception of what it means to be a good doctor and of what kind of doctor I want to be. Through you, I've gained such a unique appreciation of the patient's side of things. To hear how many times you have had to go out of your way to advocate for Mattie is frustrating, and it's so discouraging to a med student-hopeful to see so many arrogant and, to put it plainly, socially incompetent doctors. BUT I strive to be like the few valuable Dr. Bob's and Dr. Snyder's out there. It's not just about treating a disease or using a drug -- it's about treating a patient and using respect. It seems so obvious! But far too easy to forget.To focus on what your blog means to me is selfish, I know, but I offer what support I can from 1000 miles away -- my prayers. I just want to say THANK YOU. We've scarcely even met (though I feel as if I know your family intimately), but know that you have had a significant impact on my life."

The last message is from my mom. My mom wrote, "Chronic Sorrow is an apt name for what you are experiencing every day of your life since the diagnosis of Mattie's bone cancer last year on July 23rd. It is a condition that can't be treated by conventional medicine, altered, or "counseled away." It is a profound unhappiness that exists in your very soul, altering the way your body works, your eyes and ears communicate with the outside world. Even your mind is not allowed to function normally and your thoughts are constantly disrupted by doubts and fears that are frightening but not exaggerated and can give shape to deep seated anxieties about the future. You are intimately affected by every symptom, pain or discomfort that Mattie feels and are bound to his body, mind and spirit as if you had an outer body experience that has transformed you into an extension of Mattie. It is a crushing weight to handle every day and accounts for your wicked migraine headaches and general fatigue. It is a burden "too large" for human endurance and you are just a fragile young woman. I am proud of all that you have accomplished but like Daddy, I worry about you, your physical health and stamina to continue to function as the life-line for Mattie if you do not take steps to protect yourself from further physical stress and strain. I was thrilled to hear that you are seeking help at home to assist you in caring for Mattie on a regular basis. In the past, I felt It could have helped to make your day less tense and easier but now I feel it is imperative that you follow through on this idea before you break down and lose the physical capabilities that are required of you daily to ensure proper care of Mattie. That would be a disaster that neither you, nor Peter and especially Mattie could afford at this critical junction in his path towards recovery."