Sunday, December 28, 2008

Sunday, December 28, 2008

Quote of the day (Thanks Charlie!):
"A champion is someone who gets up, even when he can't." ~Jack Dempsey

Well today, I don't feel like much of a champion. Yesterday I started to feel ill, but I thought I could work through it. Bad idea! This morning I woke up with a fever, my ears are stuffed up, so much so I can't hear well, and my throat feels like sand paper. My body feels like it is falling apart, and I have no energy to even move. Peter took one look at me today and marched me right back to bed. Despite being tired and fatigued himself, he is taking on Mattie today. It is kind and loving gestures like this just illustrate what a wonderful person and father Peter is.

I was so concerned about feeling ill that I called in a prescription renewal for antibiotics. I know that Peter has to go back to work this week, and Mattie is probably going to become neutropenic, so this isn't a good time to get sick. Mattie can't be around me if I am this sick. So fortunately Dr. Bob, when he prescribed me antibiotics in October, allowed me to renew them three more times. My kind of doctor. At this point in my physical history, I can really tell when and if I need antibiotics, and on a sunday I don't have the energy to play around with an emergency room. So we called in the prescription, but we needed someone to pick it up since I really couldn't have Peter leave our home because I wasn't up to watching Mattie alone. So I called our Team Mattie point person for the day, Tanja. Tanja was my hero today. She gladly picked up my prescription and also brought Peter and I a lovely lunch. Chicken soup is one of the best medicines, don't you think? Thank you! Mattie also loves the pumpkin bread, so that was a hit too. Thank you Tanja for helping us so much today.

At around 2pm or so, Mattie's aunt, uncle, and cousins arrived and they have been with him ever since. They are playing, building, and having a good time together. This "kid" time is very good for Mattie, and from what little I can physically hear, it sounds like everyone is having a good time. Mattie needed a weekend like this, and I am all for him seeking joy and entertainment from others, other than Peter and myself. There are times Mattie is very capable and accepting of others, and then there are times he is closed off. I am just happy he is open to connecting with his cousins this weekend.

We want to thank the Knox family for making us a wonderful dinner. Everyone enjoyed your homemade enchiladas. We appreciate your support and for making plenty for our whole family.

Peter just let me know he is taking tomorrow off from work because he doesn't like the way I look. Peter will take Mattie to the clinic tomorrow for his blood work and appointment. That is a huge relief to me. Before I head back and rest, I wanted to share three e-mails I received today.

The first e-mail is from Maria. Maria's daughter, Teresa was a patient at Georgetown and she is an osteosarcoma survivor. Maria e-mailed me today a timeline of pictures of Teresa. So I got to see what Teresa looked like before she was diagnosed, what she looked like through treatment and surgery, and what she looks like today. Wow is all I can say. Teresa's pictures are amazing and it is hard to believe how someone so fragile and crushed through chemo could look as healthy and happy as she does today. The pictures were humbling and told a remarkable and uplifting story without words. Maria wrote the following to me, "So many good people are looking after you and following your story, there is so much compassion and good vibes around you, that I can't imagine any other outcome than a positive one. So very many people pulling in the same direction can't fail from helping Mattie get rid of his illness. I am not just talking, I really have a very positive feeling about Mattie's recovery.

I just finished reading yesterday's blog, and I read the story about the egg. Very true, indeed. I felt like that myself once. But there is one thing the woman failed to mention; just like a broken egg, put back together, never recovers its smoothness and perfect curvature it had before it broke, the parents and the child are never the same afterwards either. You always end up walking around thinking what would life would have been like if this had never happened. Then again, like you said, you'd probably had never appreciated the greatness of humakind as you have known it after you've experienced this. So yes, even when the egg will never be the same, those "cracks" are the proud display of the courage the family endured while fighting for a child's life.

Nearly 2 years since Teresa finished chemo, I can tell you that the more time passes by, the more we forget about all of this. Only the good memories remain, and that is why whenever you write about the wonderful Onc/Hem nurses, I feel joy in my heart thinking of them. The best part is, while many of your bloggers can only imagine what you are describing, I can see it in detail, even put faces to the names. What about the nice volunteers, like Jerry and Nancy, and so many others, who made a huge difference in our lives and are right now making a difference in yours? You asked yourself in your blog why so many of us keep faithfully reading it, well, there you have it, we not only want to support you, we love to hear about the heroes behind Mattie's brave fight, the ones that support him, the ones that help you endure all this. Without them, it would be a pretty hard and lonely battle, don't you think?

I personally like to read everything you write because I can mirror myself in you and I can relive all that you describe and that it is just a memory now for us. It was so important, such an "eye opener" to me, to all of us, that I don't ever want to forget it. It is now a part of who I am and one that I am very proud of. And, while I am not happy that it happened, and God only knows what I'd give to have spared Teresa of it (my life, for one) I think it made me a much better person and it strengthtened the links between our family, even the way I perceive the world and my relationships with others, were greatly improved because of that experience. I know it is hard to see it that way now, but with time, believe me, one day you'll realize that there was some good in all of this. And you'll want to "coach" the next unfortunate mom who happens to inherit your position, and this will make your life much more meaningful, you will derive tremendous satisfaction from helping ease the pains and worries of someone who is now where you used to be.

I'd like to share a story that may ilustrate how I can so much relate to most of the stories you write about in your blog. Remember that episode when you related how after crying over the telephone, someone handed you a $20.00 bill? and you weren't even aware that someone was listening? I thought of the day when I was waiting in line at the Gift Shop at GUH, with Teresa in tow. We must have been quite a spectacle, altough then I didn't realize it. You should know that one of our few sources of contentment, during our stay at GUH, were those frequent trips to the Gift Shop. Tiny as it is, it held treasures Teresa and I loved. Candy, trinkets, beautiful souvenirs. So whenever Teresa and I felt down, we both tripped down to pick up something, even if it was just a chocolate bar or a bag of cheetos. I laugh to think about it now (poor us!). That particular day, Teresa saw a decorative figure, a little angel, 3 inches tall and made out of something like dough. She wanted it. Her heart just set on it, and started to ask impatiently that I buy it. I looked at the price, $25.00! for something that Wal-Mart probably sold at 3 or 4. I said no. Definitively. I was always very nice to Teresa considering her state, but positive as I always am, I was SURE that she would defeat this horrible thing, and I reassured myself that I did not want to spoil her by buying her everything that she wanted, simply because she was sick. No way. Least of all, something that was clearly not worth $25.00. Well, Teresa did not relent. She kept asking and begging, making a scene out of it. Picture this: she is 5 years old, bald, wheelchair bound, on casts, her wheelchair carrying a number of bottles that drain liquids into tubes, and these connect to her body. I probably looked like hell myself, dressed in rags after a rough night at the hospital. Then it's almost our turn ot pay, and the woman in front of us, in a white coat, obviously a doctor or a doctor's assistant, herself paying for her stuff, says: "oh, and I also would like to pay for that" and she points to Teresa's angel, back in the showcase. I felt terrible. Like a cheap, bad mom. I uttered some words to the woman, something like "it's OK, she really does not need that," but she was adamant, she quickly paid and left. She was courteous, nice, but at the same time did not want to make a big deal out of it. In my amazement, I could not even ask for her name. I always wondered who she was. I wished I could have known, to send her a note, to tell her how happy she made Teresa that day. To this day, the angel sits on a display shelf in Teresa's room, and whenever I see it, I have this very nice reminder of the many people who cared for us in so many ways and made a difference in our lives. Some of them were just helpful, nice in the way they treated us, others gave us presents, some others offered a word of consolation, a card, advice, a dinner, but the angel symbolizes all of them. I never want to put it away, because it reminds me of all the good that there is in this world, despite the bad I hear in the news everyday. To this day, I am convinced that Teresa got well thanks to the combined efforts of all those kind people, some of whom were even unknown to me (as I am sure happens to you with many of Mattie's benefactors). And that is why, deep in my heart, something tells me that Mattie will live to be a living testimony of all the goodness that sprung after his tragedy.

Even though I am not quite sure why this terrible thing happened to Teresa (to all of us, in our family) and why it is happening to you and you family now, I'd like to think that it is for some very noble cause, for some greater good, like the way Mattie's case has touched so many lives to this day. Maybe, just so that his recovery sets the record as one more big miracle in these terrible times we are living in right now, times of war, hunger, disease, pandemics, natural disasters, etc.."

The second e-mail is from Liza (a SSSAS upper school mom). Liza wrote, "When reading your entry this morning, I guess that I've always believed that your writing is a release for you too. You share information with each and every one of us and we're all so grateful for your candidness, wealth of information and heartfelt thoughts. I was assuming that since this is second nature for you that it just made sense for you to write and it also must be cathartic for you to share. I'm all about sharing so I get it - actually, we all get it. You have made a connection for so many of us and our hearts are following you. Some of us never would have really gotten to know each other so you are giving us a gift too - a gift of friendship."

The last e-mail comes from my dear friend, Lorraine. Lorraine and I went to graduate school together in DC. Lorraine wrote, "The beauty of being a human being is how resilient some of us are. Funny how much is written about RESILIENCE yet remember our textbook showed us that there is no way to know who is going to be more resilient than someone else. You clearly have mastered that ability." Thank you Lorraine for such a huge compliment. I think my resilience is out of desperation, because I can't give up or give in, because where would that leave Mattie? But I do think I am learning a lot about the principle of resilience first hand, and the factors that can enhance and feed it!