Quote of the day: "Courage is being scared to death but saddling up anyway." ~ John Wayne
Mattie fell asleep before midnight on Thursday. Another record, I hope this is a trend! However, Mattie had a very restless night of sleep. He was up every two hours moaning in pain and talking in his sleep. By 4am, he needed more pain medication, and clearly because he was so restless he had a hard time waking up this morning.
Before Mattie woke up this morning I received a call from the Kennedy Center for the Performing Arts. Peter and I have been ballet ticket subscribers for 15 years. I believe it is important to support this art form, and it has given me great joy over the years to see different companies from all over the world perform at the Center. Today was the last day to renew my long standing subscription, which included orchestra seats, front and center, just four rows away from the stage. It took us years to get these amazing seats. None the less, today was an end of an era. I broke it to the woman on the phone that I wasn't renewing my subscription because my son had cancer and I couldn't even attend any of the performance this year. By the time I finished with the woman on the phone, she was beside herself and now she too is praying for Mattie. I tell you this story because this is just another clear example of how my life is changing. Slowly one by one the things I loved to do and had time to do, are being removed. This is not a woe is me statement, it is more a statement of fact. A statement of how profound osteosarcoma is on a family. How I wish I could turn back the clock to July 23, 2008, and change the outcome of Mattie's original diagnosis.
Dan, the Georgetown University student helping me out this summer, arrived at noon. Based on how Mattie was feeling today, I had no idea how he was going to do without my presence. But I figured I had to give it a chance. I was determined to get my hair cut and nails done, and I am happy to report I was successful on that front. Though sitting still for me now is dangerous, because my eyes become so heavy and I can literally fall asleep in any position.
At around 3:30pm, I checked in with Dan and things sounded like they were going well, but minutes later Dan called me back and said Mattie wanted me to come home. Dan, of course, is doing the right thing, but I find that I am stressed out and can't plan my days because I never know when Mattie will become upset and need my attention. So part of me was enjoying my time out, and the other part of me was anxious and watching the clock. Not a good feeling! I am sure things will get better as Mattie adjusts to being home again, but I am not sure when things will stabilize.
Mattie and Dan recreated Gary, the snail alarm clock, from the Sponge Bob series. They did this on saran wrap. You can see the creation that is now hanging on his easel. Mattie was very proud of his art work today and couldn't wait to show me or tell Peter about it.
When I arrived home, Mattie landed up having a stomach ache, was nauseous, and in pain. So there were multiple things to contend with. Once we said good-bye to Dan, I sat with Mattie and he pulled out his Easter baskets and we started playing. Naturally Mattie has plastic bugs in the Easter eggs! The ironic part is while playing with Mattie, and mind you I was sitting up on the floor, I must have fallen asleep slightly and landed up talking about broccoli. Mattie was laughing hysterically at me and I heard him saying, "wake up Mommy, you are talking nonsense." Got to love it, no?We played a while and then Mattie was getting tired. At this point the Kytril (an anti-emetic) was taking affect, and Mattie was hungry. He ate more today than yesterday, but his appetite is definitely not back to normal. But I fight one battle at a time.
This evening we had a lovely dinner thanks to Dawnee. Thank you Dawnee for ordering some of our favorites from Pappa Razzi. The special brownies were sinful. Thank you! As always we appreciate your continued support and generosity!
I went over to Ann's house tonight to start the dance recital preparations (Ann's daughters are performing on Saturday). I did the nails of the girls, because I thought hair, nails, and makeup in the morning would be too difficult to manage and very hard on the girls. Ann's Aunt Helen and cousin, JP, are visiting from Boston for the recital. It was wonderful to spend time in a house that ISN'T cluttered with things, and to see normal and everyday activities being performed. It was nice to see kids being kids, and to be a part of the whole equation. Something I long for. I long for the days of simple problems, now that I know what a real problem is, not much ruffles my feathers anymore. Ann and I spoke about her parents, and the importance of her role as their caregiver. But one thing was a realization to me, who will Peter and I grow old with, if not with Mattie? Who will look out for us as we age? I don't like to think in these terms, but when caring for someone with a life threatening illness, occasionally reality sets in.
Mattie was invited to attend the recital tomorrow, but he has chosen not to go. It is my hope that he will decide to join us afterward at Ann's house, but I have learned not to force things on Mattie, and when he feels more emotionally ready, he will do it. Or at least that is my hope based on previous experiences this year.
I would like to end tonight's posting by sharing three messages with you. The first one is from my friend, Charlie. Charlie wrote, "Reading Thursday's blog I had the distinct impression of someone hunkered down in a bomb shelter. You are surviving but all the joy is gone and all your attention is focused on when the next explosion will occur. I hope that Mattie's medication helps him because this situation is not good for him or for you. I am grateful to the people who did mitzvahs (good deeds) for Mattie and you yesterday (tickets, parking, acts of kindness) and sorry for the ones who behaved in a less appropriate way. Illness, particularly one that can be fatal, is very difficult for many people in our society to deal with. We hide the ill and the less than perfect away and unless they are members of our circle, many people do not have any contact with those who are fighting to survive. As a result, they have no idea how to respond or that their attentions are unwelcome or inappropriate. I do not believe they do it to be unkind but like very small children, they are unschooled in appropriate ways of behaving and fearful of the unknown. I am sorry that the outing was not what you hoped it would be, but as you said, even prior to the illness, going to baseball games was not Mattie's forte. Maybe once Mattie's medications begin taking effect you can come up with something that is better suited to his ability and comfort level."
The second message if from my friend, Susan S. Susan wrote, "I was watching the special on Farrah Fawcett this morning. Barbara Walters asked her physician, Dr. Lawrence Piro, what he thought the message Farrah would want to relay to the world and this is what he said: 'Be as fearless as you can be, don’t be intimidated by fear, keep marching forward, do what you think is right, fight for what you want to fight for whether you are winning the battle or not….' I send this to you because this sounds so much like you and how you are living your life."
The third message is also from Susan S. Susan wrote this to me last night, when I was in a foul mood. I read her fabricated article, and it got me laughing! Thank you Susan for this good chuckle. Susan wrote, "I read this article in the NY times today and thought you might find it interesting:(AP) Georgetown University Medical Center is unveiling their new medical model this week. Entitled the "Sardi Phenomenon" it has put a whole new spin on how to practice medicine. The focus is on "convenient care for the patients." An entirely new concept in the field of medicine. Named for Dr. Victoria Sardi who was the impetus in helping hospital administrators realize the need for convenient care for the patients rather than care centered on the needs of the medical staff. Dr. Sardi, with a background in mental health, realized first hand how patients' recovery is severely impacted by the lack of sensitivity to the situation of the patient."
1 comment:
Hi!
I have some input on the whole staring public issue. This was less of a shock to me when Emma got cancer than it is for most families because of Emma's autism. Of everything (autism, obvious cancer, obvious disability) autism actually is the most alienating-everyone stares at "autistic" behavior and often adults think you just have a "misbehaving" child that you aren't controlling and get snippy about it. Once Emma was obviously sick, people still stared but at least they seemed somewhat sypathetic and would try to connect with Emma who appears less "autistic" when sick because she is tired and doesn't have the energy to stim as much as usual. In my experience baldness and the wheelchair are what keep people staring. Once Emma has grown back her hair and is no longer in the wheelchair people don't stare unless she is displaying "autistic behaviors" at the moment.
You might be interested in knowing that Mattie is lucky in one way. The best next step for Emma appears to be LMPTE but the company that makes it was recently taken over by another company and supplies of the drug are running short so people who aren't already on the drug can't get it. It doesn't look like Emma is going to be able to get it at least until mid September at the earliest and I won't be surprised if that date doesn't get pushed further and further back. There are lots of kids in a similar position so Mattie is lucky to have started LMPTE when he did, just before it became hard to get.
Post a Comment