Friday, December 12, 2008

Friday, December 12, 2008

Quote of the day (Thanks Charlie!): Charlie wrote, "When I think about what you, Pete, and Mattie have gone through I think it is impossible that so much has happened over so short a time. I hope the journey for recovery runs as swiftly."
Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible. ~ St. Francis of Assisi

This quote today describes our situation perfectly. We have done the necessary (diagnosis, treatment, surgery, etc...) in order to try to achieve what is possible (a cure), however, in the midst of achieving the possible we are definitely doing the impossible. I am not sure this quote would have meant as much to me before Mattie was diagnosed with cancer.

Thursday night was another winner. Mattie was basically up until around 5:30am. He complained of intense stomach pain all night long. He even threw up. So clearly the placebo treatment of saline solution wasn't cutting it. I do think a part of Mattie's stomach issue is related to anxiety, but now that the stomach issue is present, it does need to be treated. So he is now taking a medication for heartburn and acid reflux. If I listed all the medications Mattie is on or has taken, it would be quite a long list. I am grateful that the stomach meds are through his IV. As you have heard me say time and time again, Mattie is not compliant with taking oral medication especially when his stomach bothers him. It would be wonderful if I could sneak medication in his food, but that would mean that Mattie is eating. Mattie basically has no appetite what so ever. When he does eat, the only thing he will tolerate is sticks of cheese, occasionally yogurt, and flavored ices. Not the best diet, but forcing food on him and making him uncomfortable isn't an answer either.

I was e-mailing my friend Karen back and forth today. Karen wanted to know if Mattie was napping during the day, to compensate for not sleeping during the night. When I told her 'no' for the most part, she wanted to know how he functions with no sleep? An excellent question, because I am bearly functioning at all. I was watching a video with Mattie today and literally I was falling asleep sitting upright. Mattie kept kicking me awake, and wanted to know why I was so tired. Funny, isn't it?!

Mattie had a slow start to the day, but as the day unfolded, Mattie started to break through his shell, and he began to play with Linda, Jessie, Jenny, and Whitney. In fact, when Liza came over today to drop off lunch, Mattie even spoke with Liza. Of course Liza enticed him with her delicious pumpkin muffins and a great police hotwheels car. That immediately caught Mattie's attention. I was able to leave the room today and have lunch in the parent lounge with my parents. Mattie was able to separate from me, and he had a ball with all his ladies. They are designing a wonderful Christmas house together out of a cardboard box. But they also did a lot of other wonderful projects, and sticking with the cockroach theme, Mattie made a Christmas cockroach for me today. I am not sure what the deal is with cockroaches, but I have a feeling he loves to see my reaction to the whole idea. Thank you Liza for the special angel lotion and the wonderful homemade soup, salad, muffins, and fudge! Liza and I are on completely different campuses of SSSAS and if it weren't for Mattie's illness we may not of had the opportunity to connect like we do now. These are the gifts that pop up in between a whole lot of sadness.

It was wonderful for a brief period of time today to see the old Mattie resurface. In fact the joke the psychiatrist and I had today, was did we walk into the wrong room. Mattie did not throw anyone out and was smiling and talking. However, as the day wore on, by the late afternoon, the stomach pain arose again, and he retreated back into his protective shell (where no one was allowed in his room and no one could talk in his presence). It is very sad to see this transformation happen right before your eyes, a transformation that one doesn't expect to see in a six year old.

While Mattie was playing with his ladies, I met with Dr. Toretsky. We talked about Mattie's treatment plan for the next month. Mattie is scheduled to go back to the hospital on December 22. We thought Mattie was going to have an infusion of Methotrexate then, but it turns out Dr. Toretsky would like to give Mattie the more powerful chemo drugs first, Doxorubicin and Cisplatin. So on the 22nd, we will check back into the hospital for those drugs. I believe Christmas week will be hard, because these are powerful chemo drugs that most likely will leave Mattie neutropenic by the end of that week. Mattie will be given another CT scan the week of January 12 (to assess the lung lesions), and the current thinking is we will try to go to Sloan Kettering the week of January 5, to get the first administration of MTP-PE.

I asked Dr. Toretsky what the plan will be for Mattie's treatment based on what is found in the second scan. If the lung lesions remain the same or smaller during the second scan, then will we continue with his current treatment. If however, more lesions pop up and/or if the current lesions get larger, then we know that the current treatment is not working and all the chemo drugs he is on will be stopped. Then the next question from there is, then what? I think Dr. Toretsky is looking into the next steps if this is what happens, but today he seemed visibly upset by the fact that Mattie's cancer has spread to his lungs. I told him then he could only imagine how I felt. He also understood that waiting for the results of the first scan was absolute torture, especially in terms of how the results were delivered. So for the second scan he said that Mattie will get scanned at 10am and he will meet with us at 1pm, whether the results are positive or negative. Half my stress with the first scan arose because I knew Dr. Toretsky had called a last minute meeting in which he wanted Peter present for the results.

So needless to say, we have a lot riding on these new chemo drugs and the week of January 12 will not be an easy week. In fact, waiting until then is not easy either. I feel like Mattie's well being and safety is completely out of my hands, and really out of the control of the doctors as well. Only God can determine at this point whether Mattie will remain with us and for how long.

At around 6pm, Peter called me tonight and told me his company's holiday party was this evening. He hadn't told me before, probably because he did not want me to feel bad for not going, but all I could think about was last year's office party. Mattie was running around, happy, and it was really the age of innocence for us. Funny how things can change in a year. When Peter got back from the party though, I decided to pack up and head home for the evening. I need a night's separation from the hospital for my mental sanity and stability! We want to thank the Langford family for a wonderful dinner tonight. The California Pizza kitchen pizzas were delicious along with the chocolate treat!

When I arrived home tonight, I could see my two elves had been busy at work. Today my friends Ellen and Christine came over to my home and helped organize and pack up some of Mattie's toys and things that he has outgrown. That was going to be my project while Mattie was at school this year, but that never happened. In addition, since Mattie's illness he has accumulated some wonderful gifts and presents, but right now our home is brimming from wall to wall with things. Ellen and Christine could sense this was bothering me so they gave up their morning to come to see how they could help me. Believe me they had their work cut out for them. As they know I am very sentimental and I don't like throwing out anything, which of course leads to an accumulation of a lot of things. So they sorted for me today and put together five large boxes of things for us to donate. I need to sift through those boxes soon just to make sure there isn't anything of great sentimental value that I just can't depart with. With Mattie being so ill, I think I cling to certain things more than before. The ironic part, which many of you probably wouldn't guess, is I am a VERY private person. I imagine you most likely wouldn't guess this about me from reading this blog. But prior to Mattie's illness, I was much more reserved about issues, concerns, and feelings with others in my life. Which brings me to today. Under most circumstances I would never have asked anyone to go through my home and reorganize and purge things for me. That just doesn't fit my style. But there is a lot about experiencing cancer that helps to change your perspective. Ellen and Alison say this to me all the time, that people are looking for ways to help us. That helping me makes others feel good, and not to look upon my request as a burden. So I am trying to look at these requests now in this fashion. Any case, thank you Ellen and Christine for tackling a tough job, and hopefully you will continue to work with me on the stages of this clean out project.

I received this lovely e-mail today from Ashley. Many of you now know Ashley, since she led Mattie's prayer service recently. Ashley wrote, "Your blog describing yesterday leaves me without words. But I wanted you to know I read it, absorbed it, and the image of your day yesterday has remained with me today. I am thankful to have been able to step into Mattie's room for a few minutes. Thank you. I also have the image of Mattie's little hand waving to Sam. Oh, my. That brought some tears to my eyes. The wave was gentle and welcoming, such a contrast to the other experiences you have written about. Both experiences are true--the welcoming and the traumatic anxiety with others. It's incredible that both extremes can exist within any human body, especially the body of a little 6 year old."

As I sign off for the evening, I am happy to report that Mattie is fever free. All of his cultures appear negative, meaning he has no known infection that must be treated, and hopefully within the next few days his white blood cell count will rise and we can leave the hospital for a few days. All I know is Mattie's illness has taken a great toll out on Peter and myself. Like I told Dr. Toretsky, I could put up with six more months of this, if I knew that in the end Mattie would be okay. With cancer there are no guarentees and it is hard to plan for tomorrow. This level of uncertainty is hard to come to terms with and I am in no way there yet with accepting that reality.