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!
December 28, 2008
December 27, 2008
Saturday, December 27, 2008
Saturday, December 27, 2008
Quote of the day (thanks Charlie!):
"We're so busy watching out for what's just ahead of us that we don't take
time to enjoy where we are." ~ From Calvin & Hobbes
time to enjoy where we are." ~ From Calvin & Hobbes
Mattie had a late start to the day today. Because Mattie is on IV hydation at night (his choice, since he refuses to take oral medications to balance his electrolytes), he gets up many times during the night. This doesn't seem to bother Mattie per se, but I can assure you, it wipes out Peter and I. Peter has been taking on the nights since we got home from the hospital on wednesday. But I know the night routine is grueling. Getting up three times a night doesn't sound bad in theory, but it is the cumulative effect that is wearing Peter and I down. Mattie continues to sleep upstairs in his room, inside a three person tent. The tent is so large, that it takes up his entire room. The cords to the tent are connected to all my closet doors, so at the moment, it is almost impossible to get into the closets without collapsing the tent! Makes for an interesting arrangement.
Mattie had a visit today from his Aunt Lisa, Uncle Chris (Peter's brother), and his cousins, Nat, Sydney, and Will. Mattie enjoyed his time today with them, opening up their Christmas gifts, playing with knex, legos, puzzles, and cars. At around lunch time, Alison, Ellen, and Tyler (Ellen's son, and many of you will recall the young man who raised a tremendous amount of money for the Mattie fund hosting a bingo night at his school) came over to pick up bags of Mattie items that I wanted donated. I can't thank this wonderful team for their help on a saturday! Thanks Alison for taking all these items off my hands today and taking on the responsibility of making the donation. In fact, Mattie was interested in the whole donation process today, that he insisted on going upstairs to my parent's apartment to check out what was being moved. Fortunately Lisa, my sister-in-law, and I went to my parent's apartment earlier in the day and took Mattie's things that were in clear plastic bins and moved them into dark garbage bags. So the contents inside the bags were not revealed. I think if Mattie saw his things being donated, things he no longer plays with or are suitable for him, he would have been very upset. Later in the afternoon, Mattie even took a long wheelchair walk with his family around the Washington Mall. We captured a couple of pictures of the kids today horsing around on the floor.
Left: Mattie, Will, and Sydney
Right: Nat, Mattie, and Will
We had lunch together today as a family and thanks to the Dowling family, we had an outstanding homecooked dinner. Mark and his son, Sean, came over today and delivered us a spectacular dinner, and Mark explained to me that he was born in Iraq and made us an Iraqi style chicken dish. It was wonderful, along with a lovely pasta dish and salad. Mark even brought Mattie a vanilla shake and wonderful ice creams. Thank you for working so hard and for bringing dinner for our whole family. That was very generous. You both are good cooks. It is wonderful to see a dad teaching his son how to cook! Mattie loves the airplane as well. It is a fascinating plane, you literally throw it backwards and it comes back to you like a boomerang. We also love the electric toothbrush, a great gift for Mattie since he is having trouble brushing his teeth now.
Earlier in the day I received a phone call from Grace (a friend and RCC mom). She invited all of us to go to Zoolights tonight at the National Zoo. Basically for those not familiar with this event, the zoo creates all sorts of light displays throughout the property and it is a fun and family oriented way to stroll and enjoy the season. Mattie did this last year with his buddy Alex, so I was familiar with the set up. This event did not even register with me this year, and I am so happy that Grace suggested it. It was a wonderful way to get outside, see lights, and thankfully it was a warm night. So everything was in our favor. It was nice to see our RCC buddies again, since the whole Putnam and Lee families joined us. They got to meet Mattie's aunt, uncle, and cousins as well. The light displays were very nice this year, and there is just enough not to overwhelm anyone, and yet enough to capture your attention. I took a picture of all the kids in front of the zoolights sign!
Kate, Nat, Sydney, Will, John, Mattie, Eric, and Christopher!
Toward the end of the evening, Mattie was getting upset and basically wasn't happy. By the time we got him to the car he was crying. We asked him why, but I really knew the answer. Mattie gets very upset these days when I talk to other people and do not focus my attention solely on him. Naturally it is impossible to spent 100% of my time focused on Mattie, but he gets easily slighted, and tells me that when I talk to other people it means that I don't love him or think he is special. This is not the first time I have heard this from Mattie while he has been sick, and each time, I try to help him work through this and understand how unrealistic and irrational his statements are. But there are times I am only human, and it is hard not to want to blow up, because in his mind I am not entitled to any free time. Part of if is a six year old manipulating the situation, and the other part is just his illness and insecurities. It is a fine line to walk when raising a child who is so sick. You have an obligation to be a parent, but I tell you it is very hard to parent effectively sometimes.
When we got home tonight, I could tell Mattie had something in mind to do. For the past couple of days Mattie has wanted to surprise me with something. So Peter sent me upstairs. About 20 minutes later, in walked Mattie as Rudolf the Red Nosed Reindeer and Peter as Santa. Mattie wanted to create something for me and give me a gift for Christmas. I think Mattie has been feeling that I needed to get something from him, and Peter helped him meet his goal. I took a picture of the delivery process and then the final product, which was a castle. It was a lovely surprise. I think Mattie also loves playing Rudolf and wearing the antlers.
As I write this blog we are watching "Charlie Brown's Christmas movie." A Christmas movie that transcends the generations, doesn't it?! I am reflecting on our day. I always wonder how children who spend time with Mattie process what is going on with him. Lisa was telling me today that she had an interesting conversation in the car with Will a week ago. Will is about 18 months older than Mattie. Will told Lisa that while he is at school, and in between the times he is learning, he spends time thinking of Mattie. I found that comment very interesting, because clearly children have their own way of processing what is happening to Mattie. I guess a part of me feels as if others are leading their normal lives, and perhaps occasionally think of Mattie, but I am learning that isn't always the case. Will is an example of how he is internalizing what is going on with Mattie. I also spoke with my mom on friday, and she was telling me that she may be in Los Angeles, but not a minute goes by when she doesn't think about Mattie and our situation. I think it hard to leave us after spending several months with us and realizing just how much help we need. I began to see that she is as deeply hurt by Mattie, almost as much as I am. I don't know, that probably makes sense to all of you reading this, but that was a revelation to me. Somehow I think that the magic of physical separation from us makes things better for others or makes the situation go away, but I think Mattie's situation is so profound that it does impact you no matter the age, circumstance, or your geographical location.
Tonight I was talking to Mark Putnam. Mark told me how much he enjoys reading the blog, but wonders where I get the strength each day to write it. Good question. I think the blog serves multiple purposes. It is a way of self expression, a way to document that is happening in Mattie's life (which I like to have for historical and record keeping purposes), and most certainly a fantastic way to keep connected with all of you and build our community. Sure there are some nights I may not feel like writing, but once I sit down, things usually just flow out. I chalk that up to my days as a graduate student at the George Washington University. There is a certain level of discipline required to get a doctorate in counseling, because you have to write process and progress notes on each client you counsel. Basically there is A LOT of writing involved in the degree. Writing becomes just a part of you after a while. I learned to really perfect my writing at GW, and thankfully so because this a great coping mechanism that I turn to now in this time of great stress and heartache.
As I sign off for the day, I am happy Mattie is having a good time with his cousins! It is wonderful to see, and I feel very fortunate to be surrounded by so many people who are eager to help us in a moment's notice. We are seeing the true meaning of the holiday season through each and every one of you. Thank you!
December 26, 2008
Friday, December 26, 2008
Friday, December 26, 2008
Quote of the day (Thank you Virginia B.):
"Whoever said winning isn't everything never had a child with cancer." ~ Anonymous
I was the first one in our house to wake up today, and that is only because I set an alarm clock. We had a deadline to meet, we had an appointment in the Lombardi Cancer clinic at 10:30am. The clinic staff are probably so used to me by now, because I am always an hour late to every appointment. Before Mattie's illness, if I made an appointment, I was there right on the dot. But now, my philosophy is we are doing the best we can, and we get there when we get there!
Mattie had a good morning, and ate oatmeal and pancakes. It was an eating morning. Mattie has lost some weight, and is a solid 42 pounds at the moment. My goal is to continue to get him to eat anything prior to his next chemo treatment. Mattie was compliant to go to the clinic, because we promised him a trip to Walmart and Target afterwards. Basically my least two favorite places to go to the day after Christmas. But he was so disappointed yesterday with his gifts, we told him he could pick something out at each store. He was all business during his clinic appointment, because was motivated to get out of there and achieve his goal... picking out a toy!
Moving Mattie in and out of the car isn't a simple process. The wheelchair alone feels like it weighs more than I do. So each time I want to get Mattie from the car to the wheelchair, I have to first lug the chair out of the trunk, then I have to assemble the chair, help transfer Mattie from the car to the chair, and then reverse the process when you are done. I think Mattie was getting tired after several attempts in and out of the chair today! We first stopped at Walmart, which if you haven't been in a Walmart the day after Christmas, then let me paint a picture for you. It is wall to wall people, and frankly a zoo. You think the store was giving away merchandise with the crowds it pulled in. Any case, Mattie found a wonderful Knex set at Walmart, called a Doubledare Dueling Coaster. It reminds me of a rollercoaster, but for two racing cars! At Target, he found a remote control car carrier, which also had a remote control car inside. These two items made him so happy today, and he played with them all day. In fact, Peter and Mattie spent about three hours building the Knex structure. Take at look at the masterpiece!
While they were busy building, I was doing some other chores. I decided to do laundry, because you never know when you will get called back to the hospital. I want to be prepared in case Mattie does become neutropenic. It is like living from moment to moment, from fever to fever, and chemo cycle to chemo cycle. Basically you are always walking a tightrope. I have my hospital clothes or uniforms as I call them. I only wear certain clothes at the hospital, and if I should ever be able to put this time behind me, I plan on literally burning the clothes. In fact, I may never be able to wear sweat materials again in my life.
In addition to doing laundry, I also decided to move supplies from my parent's apartment to our home. My parent's lease is up on December 31, and I figured since I had the time to devote to this project today, I might as well do it. I knew I shouldn't put this project off to next week, because I don't know what condition Mattie will be in then. I took cart loads of canned foods and paper products from one place to another today, but what I quickly realized was where in our home was I going to put all this stuff? We are packed to the gill at the moment, because now I don't have the time, patience, or effort to devote to combing through things on a regular basis. So what started as a simple project of relocating items, took on a life of its own. I had to rearrange all my kitchen cabinets and pantry closet to get things to fit. It actually was an important exercise to do, but it only further showed me how things are piling up around me, and I can't seem to keep up. Tomorrow, Alison and Ellen will be helping me move all the boxes of things I plan on donating of Mattie's, which are currently sitting in my parent's apartment, into Alison's car. December 31st is my time frame to complete everything in my parent's apartment, and I want to do it sooner rather than later. I was contemplating schlepping the things myself on saturday to Goodwill, but then I thought about it twice, and e-mailed Alison, Ellen, and Christine.
I am very fortunate, Ann has found someone to help me everyday of the week during the day time hours. So each day I have a point of contact, who I can call or e-mail on a moment's notice for help. I do not like to take advantage of people, but there are times, I know I have to send the flag up, and need to step back and get help. Moving boxes is one of those times. Thank you Ashley for checking in with me today, and offering to help me!
I want to thank the Cooper family for a lovely chinese dinner. We actually all watched a Scooby Doo movie tonight with Mattie, while we were eating. This was a major accomplishment, because for the past two days, Mattie did not even want to be in the same room as food, or smell food. We also want to thank the Cooper's for the gift they gave Mattie, we haven't opened it yet, but I think Mattie will like it, since it sounds like a lego from shaking the box. Great dinner and thank you also for the beautiful holiday cookies!
This weekend, Peter's brother, sister-in-law, and their three children are in town. So I will be curious to see how Mattie relates to his cousins and what he decides to play or do with them. This could either be a great weekend, or a very difficult and moody weekend for Mattie. The verdict is out.
Today in the mail, Mattie received several handmade Santa cards from Ms. Pessaud's second grade class at SSSAS. Thank you for these lovely cards and for thinking of Mattie! The santas are so colorful and the sentiments inside the cards are lovely. I also received two lovely e-mails today that I would like to share with you. The first one is from Mark (a friend and RCC parent). Mark wrote, "I wanted to let you know how happy we were to see that the presents were a hit and to see the photographs of Peter and Mattie in the noses, hats, and antlers. Grace had a feeling they would bring a smile and I'm so happy to see that she was right.
I actually first stopped by the hospital (we hadn't been able to check the blog since my computer has been giving us problems, so we didn't know you'd gone home) and a nurse told me with a gentle smile "Oh, Mattie was able to go home yesterday." So I dropped them the gifts by your front desk -- I'm not sure if it was Mazie or Jessica, but she was very nice.
I'm mainly writing because I wanted you to know that Christopher picked out that blue winter hat specially for Mattie. John had wanted to give Grace a winter hat for Christmas and when we were in L.L. Bean looking at hats, Christopher just said out of the blue "I want to give Mattie a hat." He picked it out and picked out the card, too (the popup card with Santa in his sleigh). Both were totally unprompted. Christopher talks about Mattie often and while I don't think he understands everything that's happening, he clearly understands that Mattie isn't well and wants to do anything he can to help. I am thinking that Christopher must have thought that Mattie's head is probably cold. He will occasionally see us reading the blog and probably sees a photo of Mattie every now and then over our shoulder. We haven't talked about Mattie's loss of hair, but he was very determined to give Mattie a hat and this hat in particular ...
We are always thinking of you and are aching with you, too. You and Peter are truly Mattie's angels on earth. No matter what the future might hold, you are making the most of every moment with Mattie and his life is so much the richer for it. John, Christopher, and I have a favorite saying -- "I love you every minute of every day and every moment." In those darkest times when Mattie is unhappy and difficult and, most likely, scared beyond all imagining, I hope it is of comfort to know that at some level, he knows that you love him every minute of every day and every moment. And all of us are with you every moment, too." I think an unsolicited gift from a child to another child is so meaningful and special. Which is why I felt the need to capture that sentiment here. In addition, I just love Mark's saying, I love you every minute of every day and every moment. That is indeed how we feel about Mattie, it is just unfortunate when fighting cancer, you need to spend so many minutes of every day fighting such nonsense as health care systems and a host of other things.
The second e-mail I received from a woman I do not even know. Virginia B. found our blog through her community's listserv. She shared with me the following, "I am a mom of an only child as well. I can only imagine the horror you must be living. I recently discovered this blog through the Beverely Hills list serve and live in Alexandria. My son and I pray for you all each night. I wanted to share something with you all in hopes of giving a further voice to your terrible nightmare. A college friend, too has a child suffering from cancer and she shared this with me..."
Thank you Virginia! This is a great story and analogy! I end tonight with the story of The Strength of an Egg!
The Strength of an Egg
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make. An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength. That is why parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
~ Juliet Freita
Quote of the day (Thank you Virginia B.):
"Whoever said winning isn't everything never had a child with cancer." ~ Anonymous
I was the first one in our house to wake up today, and that is only because I set an alarm clock. We had a deadline to meet, we had an appointment in the Lombardi Cancer clinic at 10:30am. The clinic staff are probably so used to me by now, because I am always an hour late to every appointment. Before Mattie's illness, if I made an appointment, I was there right on the dot. But now, my philosophy is we are doing the best we can, and we get there when we get there!
Mattie had a good morning, and ate oatmeal and pancakes. It was an eating morning. Mattie has lost some weight, and is a solid 42 pounds at the moment. My goal is to continue to get him to eat anything prior to his next chemo treatment. Mattie was compliant to go to the clinic, because we promised him a trip to Walmart and Target afterwards. Basically my least two favorite places to go to the day after Christmas. But he was so disappointed yesterday with his gifts, we told him he could pick something out at each store. He was all business during his clinic appointment, because was motivated to get out of there and achieve his goal... picking out a toy!
Moving Mattie in and out of the car isn't a simple process. The wheelchair alone feels like it weighs more than I do. So each time I want to get Mattie from the car to the wheelchair, I have to first lug the chair out of the trunk, then I have to assemble the chair, help transfer Mattie from the car to the chair, and then reverse the process when you are done. I think Mattie was getting tired after several attempts in and out of the chair today! We first stopped at Walmart, which if you haven't been in a Walmart the day after Christmas, then let me paint a picture for you. It is wall to wall people, and frankly a zoo. You think the store was giving away merchandise with the crowds it pulled in. Any case, Mattie found a wonderful Knex set at Walmart, called a Doubledare Dueling Coaster. It reminds me of a rollercoaster, but for two racing cars! At Target, he found a remote control car carrier, which also had a remote control car inside. These two items made him so happy today, and he played with them all day. In fact, Peter and Mattie spent about three hours building the Knex structure. Take at look at the masterpiece!
While they were busy building, I was doing some other chores. I decided to do laundry, because you never know when you will get called back to the hospital. I want to be prepared in case Mattie does become neutropenic. It is like living from moment to moment, from fever to fever, and chemo cycle to chemo cycle. Basically you are always walking a tightrope. I have my hospital clothes or uniforms as I call them. I only wear certain clothes at the hospital, and if I should ever be able to put this time behind me, I plan on literally burning the clothes. In fact, I may never be able to wear sweat materials again in my life.
In addition to doing laundry, I also decided to move supplies from my parent's apartment to our home. My parent's lease is up on December 31, and I figured since I had the time to devote to this project today, I might as well do it. I knew I shouldn't put this project off to next week, because I don't know what condition Mattie will be in then. I took cart loads of canned foods and paper products from one place to another today, but what I quickly realized was where in our home was I going to put all this stuff? We are packed to the gill at the moment, because now I don't have the time, patience, or effort to devote to combing through things on a regular basis. So what started as a simple project of relocating items, took on a life of its own. I had to rearrange all my kitchen cabinets and pantry closet to get things to fit. It actually was an important exercise to do, but it only further showed me how things are piling up around me, and I can't seem to keep up. Tomorrow, Alison and Ellen will be helping me move all the boxes of things I plan on donating of Mattie's, which are currently sitting in my parent's apartment, into Alison's car. December 31st is my time frame to complete everything in my parent's apartment, and I want to do it sooner rather than later. I was contemplating schlepping the things myself on saturday to Goodwill, but then I thought about it twice, and e-mailed Alison, Ellen, and Christine.
I am very fortunate, Ann has found someone to help me everyday of the week during the day time hours. So each day I have a point of contact, who I can call or e-mail on a moment's notice for help. I do not like to take advantage of people, but there are times, I know I have to send the flag up, and need to step back and get help. Moving boxes is one of those times. Thank you Ashley for checking in with me today, and offering to help me!
I want to thank the Cooper family for a lovely chinese dinner. We actually all watched a Scooby Doo movie tonight with Mattie, while we were eating. This was a major accomplishment, because for the past two days, Mattie did not even want to be in the same room as food, or smell food. We also want to thank the Cooper's for the gift they gave Mattie, we haven't opened it yet, but I think Mattie will like it, since it sounds like a lego from shaking the box. Great dinner and thank you also for the beautiful holiday cookies!
This weekend, Peter's brother, sister-in-law, and their three children are in town. So I will be curious to see how Mattie relates to his cousins and what he decides to play or do with them. This could either be a great weekend, or a very difficult and moody weekend for Mattie. The verdict is out.
Today in the mail, Mattie received several handmade Santa cards from Ms. Pessaud's second grade class at SSSAS. Thank you for these lovely cards and for thinking of Mattie! The santas are so colorful and the sentiments inside the cards are lovely. I also received two lovely e-mails today that I would like to share with you. The first one is from Mark (a friend and RCC parent). Mark wrote, "I wanted to let you know how happy we were to see that the presents were a hit and to see the photographs of Peter and Mattie in the noses, hats, and antlers. Grace had a feeling they would bring a smile and I'm so happy to see that she was right.
I actually first stopped by the hospital (we hadn't been able to check the blog since my computer has been giving us problems, so we didn't know you'd gone home) and a nurse told me with a gentle smile "Oh, Mattie was able to go home yesterday." So I dropped them the gifts by your front desk -- I'm not sure if it was Mazie or Jessica, but she was very nice.
I'm mainly writing because I wanted you to know that Christopher picked out that blue winter hat specially for Mattie. John had wanted to give Grace a winter hat for Christmas and when we were in L.L. Bean looking at hats, Christopher just said out of the blue "I want to give Mattie a hat." He picked it out and picked out the card, too (the popup card with Santa in his sleigh). Both were totally unprompted. Christopher talks about Mattie often and while I don't think he understands everything that's happening, he clearly understands that Mattie isn't well and wants to do anything he can to help. I am thinking that Christopher must have thought that Mattie's head is probably cold. He will occasionally see us reading the blog and probably sees a photo of Mattie every now and then over our shoulder. We haven't talked about Mattie's loss of hair, but he was very determined to give Mattie a hat and this hat in particular ...
We are always thinking of you and are aching with you, too. You and Peter are truly Mattie's angels on earth. No matter what the future might hold, you are making the most of every moment with Mattie and his life is so much the richer for it. John, Christopher, and I have a favorite saying -- "I love you every minute of every day and every moment." In those darkest times when Mattie is unhappy and difficult and, most likely, scared beyond all imagining, I hope it is of comfort to know that at some level, he knows that you love him every minute of every day and every moment. And all of us are with you every moment, too." I think an unsolicited gift from a child to another child is so meaningful and special. Which is why I felt the need to capture that sentiment here. In addition, I just love Mark's saying, I love you every minute of every day and every moment. That is indeed how we feel about Mattie, it is just unfortunate when fighting cancer, you need to spend so many minutes of every day fighting such nonsense as health care systems and a host of other things.
The second e-mail I received from a woman I do not even know. Virginia B. found our blog through her community's listserv. She shared with me the following, "I am a mom of an only child as well. I can only imagine the horror you must be living. I recently discovered this blog through the Beverely Hills list serve and live in Alexandria. My son and I pray for you all each night. I wanted to share something with you all in hopes of giving a further voice to your terrible nightmare. A college friend, too has a child suffering from cancer and she shared this with me..."
Thank you Virginia! This is a great story and analogy! I end tonight with the story of The Strength of an Egg!
The Strength of an Egg
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make. An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength. That is why parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
~ Juliet Freita
December 25, 2008
Merry Christmas!
Thursday, December 25, 2008
He shut down from talking for many parts of today. In fact, Mattie was going to have two visitors today, Marilyn (one of his preschool teachers from RCC) and Kathie (his occupational therapist), but he refused all company. This is certainly understandable considering all the people that freely come and go in his hospital room 24/7, but I can tell you as a parent, this is very isolating and makes you feel helpless and at times hopeless. In between his moodiness, Mattie reported to Peter and I that he sees things, frightening things while he is awake. It can come on all of a sudden, and he doesn't know how to describe it, but to me, who is more familiar with working with adults rather than children, I would call it a child version of a flashback. Mattie is reliving the trauma he is experiencing in the hospital. It is very upsetting to hear this coming out of the mouth of your child, regardless of how understandable it is. Fortunately I feel like we are addressing this medical trauma with medication and therapy and in time I hope this too gets better. I believe that Mattie's emotional state is greatly impacting his physical status and his unwillingness to reclaim his body.
As we started unpacking what caused Mattie's funk today, I began to realize he was disappointed with his gifts. Mind you he had plenty of gifts to open, most of which he requested, but these things did not make him happy. I am the first one to agree that things can't make you happy, but the whole Christmas gift experience was seemingly blah for Mattie. I think Mattie has gotten so used to receiving gifts on a weekly basis since August, that Christmas wasn't special or anything different from every other day since he has been sick. In addition, Mattie had his mind set on a huge toy car, the kind that you get into and drive. Usually I would say no way to such a request, but when Mattie was wrapped up like a mummy in the hospital and I wanted him to start doing physical therapy, I promised him if he worked with Anna and really worked on walking, we would consider such a large purchase. Well in his mind he feels like he is walking, and he was looking for this huge toy car today after opening up his gifts. He was disappointed in me and of course that weighed heavy on my mind. Mattie and I feed off of each other, and his funk and moodiness did not help my mood in any stretch of the imagination. Poor Peter had both of us to contend with.
Grace also gave me a beautiful guardian angel pin. It is beautiful and will be coming with me to the hospital! We also look forward to listening to the wonderful CDs you sent us! Thank you for trying to help us make this day special.
Quote of the day: "Christmas is the keeping-place for memories of our innocence." ~ Joan Mills
I had the time today to search for a quote that captured the mood in our household today. To me this quote hits the sentiment I am feeling right on the head. Somehow all three of us (Mattie, Peter, and I) realize on some level that it is the end of our innocence. I think what can make Christmas a particularly depressing time in general (even if I factored out living with a son with a life threatening illness) is we have memories and expectations of what Christmas is supposed to be like. I remember Christmas very fondly as a child. I was fortunate to live in a town that was close in proximity to my mother and father's family. Things just seemed simplier then, it could be my naiveté of being a child who seemed to not have a care in the world, but I remember being surrounded by family, fun, and lightness. So far removed from my reality today. Though I also feel that the mood in our home today is so difficult that we could be surrounded by a football field of happy people and we would still feel pretty much the same.
Mattie spent wednesday night upstairs in his bedroom. He refused to sleep in our living room and in his hospital bed. Good in theory, but he still has trouble moving around. Now to top it off, he not only wanted to sleep in his room, but he wanted Peter to set up his huge tent in Mattie's room, and he wanted to sleep in the tent with Peter. Peter was a good soul and accomodated this request. Peter is better than I am, because after a long day, setting up a tent that is meant to be set up outside with stakes/poles, would be so low on my 'to do' list. Mattie waited patiently while Peter figured this out, and once the tent was set up, I set up Mattie's hospital mattress inside the tent, helped him in the tent, and then hooked him up to his IV fluids. While Peter was locating the movie Wall-E for Mattie to watch, I was rubbing Mattie's head, and he actually fell asleep and never saw the movie. Mattie was out by 9pm.
At 6am, Mattie was up and wanted to know if Santa came and delivered him presents. So he headed downstairs and Santa did not disappoint. I took a couple of pictures of Mattie opening presents, but I could quickly see that Mattie was moody and not happy.
He shut down from talking for many parts of today. In fact, Mattie was going to have two visitors today, Marilyn (one of his preschool teachers from RCC) and Kathie (his occupational therapist), but he refused all company. This is certainly understandable considering all the people that freely come and go in his hospital room 24/7, but I can tell you as a parent, this is very isolating and makes you feel helpless and at times hopeless. In between his moodiness, Mattie reported to Peter and I that he sees things, frightening things while he is awake. It can come on all of a sudden, and he doesn't know how to describe it, but to me, who is more familiar with working with adults rather than children, I would call it a child version of a flashback. Mattie is reliving the trauma he is experiencing in the hospital. It is very upsetting to hear this coming out of the mouth of your child, regardless of how understandable it is. Fortunately I feel like we are addressing this medical trauma with medication and therapy and in time I hope this too gets better. I believe that Mattie's emotional state is greatly impacting his physical status and his unwillingness to reclaim his body.As we started unpacking what caused Mattie's funk today, I began to realize he was disappointed with his gifts. Mind you he had plenty of gifts to open, most of which he requested, but these things did not make him happy. I am the first one to agree that things can't make you happy, but the whole Christmas gift experience was seemingly blah for Mattie. I think Mattie has gotten so used to receiving gifts on a weekly basis since August, that Christmas wasn't special or anything different from every other day since he has been sick. In addition, Mattie had his mind set on a huge toy car, the kind that you get into and drive. Usually I would say no way to such a request, but when Mattie was wrapped up like a mummy in the hospital and I wanted him to start doing physical therapy, I promised him if he worked with Anna and really worked on walking, we would consider such a large purchase. Well in his mind he feels like he is walking, and he was looking for this huge toy car today after opening up his gifts. He was disappointed in me and of course that weighed heavy on my mind. Mattie and I feed off of each other, and his funk and moodiness did not help my mood in any stretch of the imagination. Poor Peter had both of us to contend with.
We tried to engage Mattie in building, trains, puzzles, books and other things, but he wasn't interested in anything. It made for a very challenging and tiring day. I wanted to introduce Mattie to "Miracle on 34th Street," a movie that I always loved. Mattie tuned in and out of it, but mostly out of it. At around noon, Marilyn (from RCC), dropped off a lovely chinese lunch for us. Marilyn also made a lovely bread for us and shared with me her special chocolate supply. I feel honored. Mattie loved the Wall-E invisible ink activity book and that engaged him for a little bit, which was a first for the day. While Peter was carrying Marilyn's things into our home, the big Scooby Doo balloon that Marilyn wanted Mattie to have flew away. Thank God Mattie did not see this because that would have been a major meltdown. Peter felt terrible, but I told him not to worry about it, since this could have happened to anyone. Mattie also opened up several gifts today that came through the mail.
We want to thank Kathryn (a SSSAS upper school mom) for the tree that lights up and sparkle foam. Kathryn also gave me some special gifts such as a book entitled, "Gifts from the Sea," and a handmade piece of jewelry made of spectacular red stones that has a lovely heart clasp. Kathryn says the bracelet should remind me of all of those out there that love me. Thank you for such special gifts and all the things you brought back for us from your magical trip to Italy. Mattie received some great dot to dot books, and a look and find book from Brian Boru (our feline friend). Thanks Brian! We want to thank the Coker family for the great Green Monster/Wally books. A must for any Red Sox fan! Thank you for thinking of Mattie! We thank the Torem family for the game, Hopper, Jr. I look forward to playing this with Mattie.
As we headed into the evening, Liza M. (a SSSAS upper school mom) came by to drop off dinner to us. Liza is a marvelous and creative cook, and you wouldn't believe what she cooked for us. I want to share the menu with you because I think a lot of love was put into the making of this food. The menu consisted of: baked brie (with cranberries and brown sugar), tapenade in filo shells, Filet of Beef, roasted potatoes, string beans, zucchini bites, mixed greens with berries, Hannah's (a special family recipe) pound cake (in the shape of a Christmas tree), and assorted cookies and fudge! Quite a menu no?! Liza also gave us all Christmas gifts. Thank you for the "I believe" soaps. What a perfect sentiment. Peter loves his baseball trivia calendar (a great gift for such a baseball fan!) and I look forward to playing dog bingo with Mattie.
When I went downstairs to meet Liza, Jessica who was working at the front desk tonight, handed me more presents that were delivered for Mattie. Peter and I felt bad that Mazie and Jessica had to work our front desk on Christmas, so we put together Christmas bags of goodies for both of them! When I arrived back home, I told Mattie that more gifts arrived. They were from the Putnam family (friends of ours from RCC). Grace you out did yourself. We loved reading the "Night Before Christmas" pop up book and the elf hats, reindeer head band, and rudolf noses were a major hit. I took pictures of Mattie and Peter wearing these fun things. Mattie then had the idea that he would be rudolf the red nosed reindeer and Peter would be Santa. It was great to see Mattie smile and animated for a few minutes today.
Grace also gave me a beautiful guardian angel pin. It is beautiful and will be coming with me to the hospital! We also look forward to listening to the wonderful CDs you sent us! Thank you for trying to help us make this day special.
Peter and I are wiped out today after trying to entertain Mattie, and also deal with his non stop whinning and moodiness. I am thankful that Peter was home today, because trying to manage this alone would have been over the top. I hope that tomorrow is a better day!
As I sign off tonight, I hope our readers who celebrate Christmas had a wonderful and joyful day with your family. Appreciate every good and healthy moment, I know I took all those times for granted before Mattie's illness! Though today was what I would call a depressing day, and that is putting it nicely, I am very aware of how lucky we are to have all of you out there supporting us. To all of you, I send you this quote! Merry Christmas!
"The joy of brightening other lives, bearing each others' burdens, easing other's loads and supplanting empty hearts and lives with generous gifts becomes for us the magic of Christmas." ~ W. C. Jones
December 24, 2008
Wednesday, December 24, 2008
Wednesday, December 24, 2008
Mattie met with Dr. Matt Biel (psychiatrist) this morning, right after his Scooby encounter. They are continuing to develop a rapport, which to me is the cornerstone of a good therapeutic experience, especially when working with a child who is suffering from the aftermath of surgeries, living life in a PICU, and not to mention dealing with a life threatening illness. Any one of these things could make someone anxious, but all three of them are a recipe for disaster. I am very pleased with the doctor's proactive stance with Mattie now, and he faithfully saw Mattie three times this week. Mattie couldn't wait to show Matt his remote control tarantula. Matt hammed it up, and they had a good time talking about the tarantula. But the tarantula also became a therapy tool, since it is a perfect opportunity to talk about what frightens and scares us . Coach Dave, did you realize how versatile this tarantula was going to be!? Mattie also had a visit from Anna, his physical therapist. There are some days Mattie is into working and some days Mattie wants to be left alone. Anna could tell the latter was true today but she still came in and talked with Mattie and also wished us a Merry Christmas. I could see that Anna was truly moved by our Christmas gifts to the nurses and staff. Anna said she did not plan on taking her necklace of "hope, faith, and love" off and thought the statement on Mattie's wrist band was very moving.
Once we had loaded up the car and said goodbye to Zachary we headed home. Transitioning home is never easy. Because we have to pick up our lives where they left off. We brought as much as we could into our home, so I could sort it and organize it, but I feel sorry for Peter's car. It has become the storage center for toys and hospital things. Mattie eased into being home but felt nauseous for most of today and did not want to smell food. At 5pm today, we had a very special visitor. Well a couple for that matter. Santa came over to visit Mattie at home. This particular Santa was Ann's uncle Ed. Ed and his wife, Helen, are following Mattie's story from Boston. Ed came dressed up beautifully with sleigh bells as well. He spoke with Mattie and delivered him two wonderful presents, legos and sculpting clay. Seems like Santa really understands Mattie's interests! Here is a great picture capturing that moment.
After Santa left, I tried to get Mattie to eat something, but he wasn't interested in the least. But he did have the energy to open up several gifts that were mailed to him. We want to thank Kazu (Mattie's buddy from SSSAS) for the wonderful snowing santa. It is fabulous and really puts you in the holiday spirit to see snow falling. We also want to thank Jane and Sandy (family friends of ours) for their care package filled with wonderful costumes, lollypops, and silly straws. That was very thoughtful, and Mattie will have fun dressing up! Especially as a doctor! Maybe he can go to the hospital this way and subject some doctors to some of the stuff they are good at dishing out. Thank you Emily W. (Mattie's babysitter) for the lava putty and scooby snacks. The lava putty is right up Mattie's alley. Anything gross and goopy to the touch is perfect. We also want to thank Marianne and Dave (our college friends) for their dino dig gift and the Pixar short films dvd. Dino digs are one of Mattie's favorite things to do and Mattie and Peter sat down together to watch the Pixar films and they enjoyed it especially seeing the evolution of Pixar as a company! 
When Mattie arrived at the hospital on monday morning, there was a gift awaiting him in his room. It was a beautiful handmade wreath with snowmen on it. The snowmen can even light up. The gift was designed by Ellen, one of Mattie's very special HEM/ONC nurses. Several weeks ago, Mattie told Ellen that he liked the wreaths she made for the PICU. He told her he wanted on too. Ellen promised to make a wreath for Mattie, and what a wreath she made. It is adorable. I never thought we would be receiving gifts from the nurses. It seems to me they are our gift, and they deserve gifts in return, not the other way around. This wreath is very special to us, and I took a picture of it for you to see. 
Quote of the day:
"Remember, if Christmas isn't found in your heart, you won't find it under a tree." ~ Charlotte Carpenter.
How to describe tuesday night? Well Mattie did not get sick from the chemotherapy. Which continues to shock Peter and I. The first two times he had doxorubicin and cisplatin, Mattie was a mess. Of course, we celebrate this success, but then as a parent you can't help but wonder if this means the drugs are not working effectively and getting the job done. For some reason I have tricked myself in believing the sicker the chemo makes Mattie, the more "bone bugs" are getting killed off. Now I realize there is NO research to substantiate this feeling, it is simply a feeling. Or an irrational worry. But I freely admit I have it! None the less we had a wild night. Because Mattie is on a large quantity of fluids to flush his system post chemo, Mattie literally was waking up every hour to go to the bathroom. When he has to go, he really has to go and you can't dilly dally around because there will be an accident all over the place. Moving quickly with a child who has had such major surgeries is not an easy task either. So Peter and I woke up this morning feeling like the walking wounded.
Today was an absolute whirlwind. Thankfully Peter took the day off of work. So we were hopeful to have the opportunity to sleep past 6am. However, our lovely construction friends at the hospital started their thing at 7am. So we were up! Linda told us that the PICU was going to have a special visitor this morning, Scooby Doo. As you know Mattie is in love with Scooby, so we knew Mattie would want to meet him, but he was arriving at 8:30am. These days Mattie isn't up at that hour. When Mattie did wake up he was upset that he missed Scooby. Fortunately Linda took Scooby around the hospital, and then landed back at Mattie's room later in the morning. So Mattie started his day off on a good note with a visit and gifts from Scooby. We got a picture of the two of them together. Scooby was a very nice fellow and gave out adorable pirate cups and gear.
Mattie met with Dr. Matt Biel (psychiatrist) this morning, right after his Scooby encounter. They are continuing to develop a rapport, which to me is the cornerstone of a good therapeutic experience, especially when working with a child who is suffering from the aftermath of surgeries, living life in a PICU, and not to mention dealing with a life threatening illness. Any one of these things could make someone anxious, but all three of them are a recipe for disaster. I am very pleased with the doctor's proactive stance with Mattie now, and he faithfully saw Mattie three times this week. Mattie couldn't wait to show Matt his remote control tarantula. Matt hammed it up, and they had a good time talking about the tarantula. But the tarantula also became a therapy tool, since it is a perfect opportunity to talk about what frightens and scares us . Coach Dave, did you realize how versatile this tarantula was going to be!? Mattie also had a visit from Anna, his physical therapist. There are some days Mattie is into working and some days Mattie wants to be left alone. Anna could tell the latter was true today but she still came in and talked with Mattie and also wished us a Merry Christmas. I could see that Anna was truly moved by our Christmas gifts to the nurses and staff. Anna said she did not plan on taking her necklace of "hope, faith, and love" off and thought the statement on Mattie's wrist band was very moving.Mattie was discharged from the hospital this morning because he wasn't vomiting and appeared to be holding his own. I spent the morning cleaning up and packing the room, and Peter helped in between entertaining and playing with Mattie. Mattie loved having Peter around this morning and clung to him tightly. While we were packing Mattie had a visit from his friend Zachary, Zachary's sister, Alexandra, and his mom, Katie. Katie brought us a lovely homemade pumpkin loaf. Which is one of Mattie's favorite things! But what Katie helped us with tremendously was carrying several of our bags down to our cars. That was an enormous help! With the holidays at the hospital, we were innundated with gifts. The hospital itself gives many gifts to the children each day. The kids love it, but in a tight space it is hard to organize all this stuff. While Zachary was visiting us, two Marines came by with Linda and distributed toys to Mattie. They even allowed Zachary to get a toy. Thank you Linda for making this happen. The Marines were delightful, respectful, charming, and couldn't do enough to make Mattie smile. We took a picture with these fine gentlemen and thanked them for their work and sacrifice they make for us each day!
Once we had loaded up the car and said goodbye to Zachary we headed home. Transitioning home is never easy. Because we have to pick up our lives where they left off. We brought as much as we could into our home, so I could sort it and organize it, but I feel sorry for Peter's car. It has become the storage center for toys and hospital things. Mattie eased into being home but felt nauseous for most of today and did not want to smell food. At 5pm today, we had a very special visitor. Well a couple for that matter. Santa came over to visit Mattie at home. This particular Santa was Ann's uncle Ed. Ed and his wife, Helen, are following Mattie's story from Boston. Ed came dressed up beautifully with sleigh bells as well. He spoke with Mattie and delivered him two wonderful presents, legos and sculpting clay. Seems like Santa really understands Mattie's interests! Here is a great picture capturing that moment.
Santa also brought with him Ann's Aunt Helen, Dr. Bob, and Bob's older daughter, Katie. It was quite a Christmas team. They also brought us a wonderful Christmas Eve dinner, and Mattie loved the homemade cookies! Peter and I loved the ham, and of course Ann's spinach dip. But the true gift that was delivered this Christmas was when Bob sat next to Mattie and said to him that he thought Mattie needed access to both of his hands to open Christmas gifts. That immediately caught my attention because I knew where this was going. Bob asked Mattie how he felt about his cast coming off his left arm. Before I knew it, Bob had Mattie's arm unwrapped and we were all joking about the TERRIBLE smell coming from the cast. After all the cast was on Mattie's arm for about five weeks or so. Bob really surprised me because when I spoke to him last week about the cast he was preparing me for it to be on another week or so. So I never imagined it to come off today. The ironic thing is Mattie truly believes this was a gift from Santa. That Santa stopped by the Henshaw's to pick up Bob just so he could bring Bob to Mattie's home to remove the cast. How adorable! I snapped a picture of Bob and Mattie in deep discussion over this cast. Some how the cast being removed is a very symbolic gesture to me that physical healing is beginning. It is my hope with physically healing we can recapture some other aspects of our lives back. But I know we have a long road ahead of us. I know that when I see Mattie struggling to walk or try to use his arms. I realize I can't be pessimistic, but there are times, I wish Mattie had his sweet body back intact.
After Santa left, I tried to get Mattie to eat something, but he wasn't interested in the least. But he did have the energy to open up several gifts that were mailed to him. We want to thank Kazu (Mattie's buddy from SSSAS) for the wonderful snowing santa. It is fabulous and really puts you in the holiday spirit to see snow falling. We also want to thank Jane and Sandy (family friends of ours) for their care package filled with wonderful costumes, lollypops, and silly straws. That was very thoughtful, and Mattie will have fun dressing up! Especially as a doctor! Maybe he can go to the hospital this way and subject some doctors to some of the stuff they are good at dishing out. Thank you Emily W. (Mattie's babysitter) for the lava putty and scooby snacks. The lava putty is right up Mattie's alley. Anything gross and goopy to the touch is perfect. We also want to thank Marianne and Dave (our college friends) for their dino dig gift and the Pixar short films dvd. Dino digs are one of Mattie's favorite things to do and Mattie and Peter sat down together to watch the Pixar films and they enjoyed it especially seeing the evolution of Pixar as a company! Last, but not least, I want to extend a special, special thank you to Susan H. Susan is a colleague of mine and besides being an outstanding mental health counselor, she also is an artist with the gift of designing quilts. I have seen many of Susan's quilts over the years at conferences, but I never thought we would get one personally designed for us. Today Mattie received a priceless gift, which clearly was a labor of love. The detailing and the stitching were incredible, in parts of the quilt it almost looks like the stitching zig zags like a puzzle piece. Susan wrote me a letter and I want to share a portion of the letter with you. Susan wrote, "When I first started reading your blog, I saw the picture of Mattie in a superman cape and thought how ironic this situation is. If only there was a real superman, I think his name would be Mattie Brown! His situation has most likely altered how people many decades older than he is view their own lives, what's important, what's valuable, etc. This quilt can be used as a signature quilt. I have enclosed some fabric pens for you to use. I thought perhaps Mattie would like friends, family, and hospital staff to sign their name, well wishes, etc. on the red and yellow squares around the edges." If you are interested in learning more about Susan, or seeing some of her other works, please visit her website: http://www.susanhoppenworth.com/. The quilt is spectacular and Mattie couldn't get over it, and the fact that it says, "super Mattie" really caught his attention. Mattie is already putting the quilt to good use tonight. Thank you Susan for this special gift, which we will cherish.
When Mattie arrived at the hospital on monday morning, there was a gift awaiting him in his room. It was a beautiful handmade wreath with snowmen on it. The snowmen can even light up. The gift was designed by Ellen, one of Mattie's very special HEM/ONC nurses. Several weeks ago, Mattie told Ellen that he liked the wreaths she made for the PICU. He told her he wanted on too. Ellen promised to make a wreath for Mattie, and what a wreath she made. It is adorable. I never thought we would be receiving gifts from the nurses. It seems to me they are our gift, and they deserve gifts in return, not the other way around. This wreath is very special to us, and I took a picture of it for you to see. 
Today before we left the hospital, I saw Miki, another one of our favorite HEM/ONC nurses. Miki has helped me through some challenging times with Mattie, especially during the time Mattie had a bad reaction to his platelet transfusion. Miki gave me a lovely gift today and card. I would like to share a portion of what Miki wrote to me. She said, "I know things are hard and lots of thoughts are going through your mind every day. But you always keep yourself intact, having a nice smile on your face, and take such good care of Mattie and everybody else around you and your family. It always amazes me. I have great respect for you as a mother, as a wife, as person, and as a woman." Miki's comments meant a great deal to me today, and I will hold them dear and reflect upon them during all our tough times ahead. Miki gave me some wonderful aromatherpy products, that I will certainly enjoy using. I share with you the gifts that Ellen and Miki gave us, because I think this speaks to the caliber of the nursing staff at Georgetown. They are remarkable women! Something I am thankful for this Christmas season.
I also received a very meaningful and thoughtful letter written to me by a SSSAS father. Peter K.'s son was in Mattie's kindergarten class last year, and I am saddened I did not get to know Peter last year. I have had two opportunities since Mattie's illness to meet him and I am deeply moved by his caring, compassion, and support. His letter today is something that I will keep and read from time to time. It is a letter written by a parent who truly feels my pain and can only imagine what it must be like to walk in our shoes each day. Peter's letter made my Peter and I pause tonight. Because if I thought others don't really get it, I am wrong! You get it more than I know. I want to share just a sentence or two from Peter's letter. Peter wrote, "When I see Mattie's smiling face on the blog, I am shamed by my worldly concerns. I am sure many others feel the same way. In this sense, Mattie has already changed lives in a manner great people do but over the course of an entire lifetime. You and Mattie have accomplished this during your season of trial." Peter, I completely agree with you. Mattie is great, and he is certainly educating all of us about the importance, value, and meaning in life. Thank you for your kind letter, it means more to me than you will ever realize.
As I sign off this Christmas Eve, I want to wish all our readers who celebrate Christmas a beautiful, meaningful, and loving Christmas. I would be remiss on this special day, if I did not acknowledge all of Team Mattie and all our Mattie supporters. For all of you, I am forever grateful. We could not accomplish what we do without you. I sincerely mean this. I also want to thank two special members of Team Mattie, Alison and Ann. Alison, thank you for managing our Mattie Fund and for helping us with communications and outreach and Ann, what can I say? There is a special place for you in heaven. As my friend Lorraine says, "Ann=a miracle!" So true! Ann, we are thankful for your energy, your passion, and your hope for Mattie and our family. Thank you for doing an outstanding job coordinating the Team and for keeping the dream of a cure alive. With Team Mattie, I never feel alone.
"This is the message of Christmas: We are never alone." ~ Taylor Caldwell (1900-1985), English novelist.
December 23, 2008
Tuesday, December 23, 2008
Tuesday, December 23, 2008
Quote of the day: "Stand up to your obstacles and do something about them. You will find that they haven't half the strength you think they have." ~ Norman Vincent Peale
While Mattie was working with Anna, Ashley (as many of you recall Ashley led the prayer service for Mattie a few weeks ago) came to visit and she brought her son, Sam, with her. Mattie and Sam went to RCC together. Ashley brought several very special gifts for Mattie, all from Bob #2's, Aunt Alberta. Mattie is now the proud recipient of a Boston Red Sox blanket and a beautifully framed official MLB, Dustin Pedroia photo (Peter really liked this one!). In addition, Aunt Alberta is very artistic and painted two beautiful Christmas ornaments for Mattie. One ornament acknowledged the years the Boston Red Sox won the world series and the other ornament had Mattie's name on the front surrounded by holly. I took pictures of these creations to share with you. I want to thank the Glennon family for yet again supporting us and we are touched that these gifts came all the way from Massachusetts. Thank you Mema and Pipa for the lovely card explaining the gifts, it meant a lot.
Quote of the day: "Stand up to your obstacles and do something about them. You will find that they haven't half the strength you think they have." ~ Norman Vincent Peale
Mattie has been a real trooper. He dealt with doxorubicin and cisplatin beautifully last night and even this morning experienced no nausea. This of course is spectacular, but it is unnerving because it is such a different experience from the first two times these drugs were administered. The first two times, Mattie was very sick and did non stop vomiting. This was before we found Kytril, a very efficient anti-emetic. Now we have Kytril on board, so perhaps this explains the major difference. Mattie got up this morning, but was too tired to get out of bed. He wanted me next to him, so I jumped into bed and rubbed his head and face and he fell back to sleep, and so did I. What you need to understand though is while Mattie is getting this chemo he is also getting something called mannitol. Mannitol in a way is like a diuretic, and literally Mattie has to go to the bathroom almost on the hour. This would be fine during the daytime hours, but not so fine at night while you are trying to sleep. In the past Mattie would not get up in time, and we would land up having to change him and the bed each time he had an accident. Last night there were no accidents. Tricia, Mattie's nurse, did remind me though not to discard Mattie's urine without wearing gloves, because the chemo is excreted in the urine. So I heeded her advice and each time he voided I used gloves. However, it did not matter, the chemo went right through the glove and today I have a small blister on my finger. So now I am moving to wearing double gloves, but if these chemo drugs are affecting my skin this way, God only knows what it does to Mattie's body?!
While we were resting this morning, my friend Susan S. stopped by. She brought me a hot chocolate and a chocolate muffin. You just can't have enough chocolate, any good counselor (as she is) would know this! Susan also brought Mattie some wonderful gifts such as activity books, a snowflake picture frame kit, many wonderful stories to read, and a game board called, Zooreka. Mattie and I had a good time playing this game together. The goal of the game is to build your own zoo, and taught some clever trading and bartering skills. After we played the game, Linda had invited Mattie to the floor's pizza holiday party. So when Mattie heard about pizza, he seemed motivated to get into his wheelchair and out of his room. Mattie ate four pieces of pizza, which was incredible. He practically did not come up for air. He then moved to some of the craft activites. While doing crafts, we had a visit from Ellen. Ellen brought me a wonderful lunch and she brought Mattie a shake and a happy meal as well. I appreciate you giving Mattie the game Clue and a new movie called, "Everyone's Hero." We look forward to seeing it with him! I personally appreciate the dreamtime neck wrap that I can put into the microwave and work out some of the amazing tension both Peter and I hold in our necks. That was a very thoughtful gift! But Ellen really saved the day for me. I have developed huge canker sores in my mouth. But I never had sores like this before. They are so bad and painful, the left side of my face is swollen, I can bearly eat, and talking is painful. I was going to wait for Peter to bring me some over the counter medication after work, but Ellen took it upon herself to get them immediately for me. I really appreciate this thoughtfulness and I am hoping it helps me feel better soon.
In the midst of trying to have lunch, Mattie demanded a lot of attention as he was struggling with creating a foam santa house. I don't know if you have ever worked with a foam structure, but it is like working with jello. It isn't easy. Both Ellen and I were trying to work with him, but then I suggested that we use hot glue on this structure otherwise it wouldn't stay in place. So Linda jumped in and worked with Mattie for a while, until Dr. Matt Biel (psychiatrist) came up to work with Mattie. Matt and Mattie, played for a while in the hallway and then eventually they migrated to Mattie's room. Mattie is building a rapport with Matt, and I am very pleased to see Matt trying to relate to Mattie and play with him on his level. I think this is very therapeutic, and Mattie is in a hospital surrounded by women, and I think positive role models like Jey and Matt are very important for Mattie to see on a regular basis! After Mattie's appointment with Matt, Anna arrived. Today Mattie and Anna had a long physical therapy session. Mattie did try to walk twice, but he complained that his feet were bothering him. It is hard to know whether this was his excuse or the reality of the situation, since in the past chemo has affected the skin on his feet. I was so pleased to see Mattie and Anna interacting so well.
Mattie also had visits from Jey, Jessie, and Jenny. All his favorite people. They all came to wish him a Merry Christmas and Jey even gave Mattie one of his flashlights. Mattie was very pleased by this acquisition. Jenny has been working on transforming a large cardboard box into a Christmas house. This project is looking good and has a realistic looking TILE fireplace inside of the structure. After all Santa needs a way to enter this house! If you recall, one of Mattie's clay pieces that he designed with Jenny and Jessie is on display in a gallery in the District of Columbia. This gallery features the artwork of other local cancer patients. Though I would like to see Mattie's work in person, it most likely isn't going to happen. But Brandon and his family stopped by today. Though Brandon (Mattie's big buddy) isn't undergoing chemo anymore, he still needs scans and check ups. Today was a scan day for Brandon. Mattie got to meet Brandon's sister, Ashley, who is home from college. The wonderful treat though besides seeing this lovely family, was that Brandon's dad took a picture of Mattie's art work which was on display in the gallery. He sent me the picture, so that I wouldn't miss out on this experience. Thank you Jim! Below you will see Mattie's picture. It is a butterfly holding a large acorn, and Mattie described this art for the therapists by saying, "This little butterfly is strong and can carry this acorn on its back." Mattie is my little butterfly for sure!
While Mattie was working with Anna, Ashley (as many of you recall Ashley led the prayer service for Mattie a few weeks ago) came to visit and she brought her son, Sam, with her. Mattie and Sam went to RCC together. Ashley brought several very special gifts for Mattie, all from Bob #2's, Aunt Alberta. Mattie is now the proud recipient of a Boston Red Sox blanket and a beautifully framed official MLB, Dustin Pedroia photo (Peter really liked this one!). In addition, Aunt Alberta is very artistic and painted two beautiful Christmas ornaments for Mattie. One ornament acknowledged the years the Boston Red Sox won the world series and the other ornament had Mattie's name on the front surrounded by holly. I took pictures of these creations to share with you. I want to thank the Glennon family for yet again supporting us and we are touched that these gifts came all the way from Massachusetts. Thank you Mema and Pipa for the lovely card explaining the gifts, it meant a lot. 
In the midst of a given day here, Mattie can accumulate a lot of gifts. The gifts are coming from
very generous families who donate Christmas gifts to the children in the hospital. Mattie also received three lovely Christmas stockings from Linda. Mattie liked them so much, he put them on his feet. I just had to capture this with a picture. When I snapped this picture, you have to understand Mattie had a full day, and was beginning to unwind and watch the movie, Wall-E.
very generous families who donate Christmas gifts to the children in the hospital. Mattie also received three lovely Christmas stockings from Linda. Mattie liked them so much, he put them on his feet. I just had to capture this with a picture. When I snapped this picture, you have to understand Mattie had a full day, and was beginning to unwind and watch the movie, Wall-E.
This evening we had a visit from the Holm family. Evelyn was one of the first mom's I met at SSSAS, and little did I know that her husband was Coach Dave. They are both such wonderful, sincere, caring, and supportive people. They delivered us a marvelous dinner, and the brownies are incredible. Those of you who read the blog must think I am physically turning into a piece of chocolate. Maybe so, but what a way to go. In addition, to a lovely visit and dinner, they also gave Mattie a gift right up his alley. In line with the bug theme, Dave got Mattie a remote controlled tarantula. You got to see a picture of this thing to appreciate it. It is life size and looks very real. Mattie has scared four nurses and Linda today with it. It was the perfect gift for Mattie, and he became very energized by the whole thing. I also want to thank Evelyn's mom for the meaningful book and healing tapes by Bill Johnson. It was very thoughtful of your mom to think of us and to be praying for Mattie.
As we head into Christmas Eve, I sense a major push to try to get Mattie home. Since Mattie handled chemo well today, the thinking is if he does well tonight and into tomorrow morning, Mattie will be discharged from the hospital. The hospital staff is trying to coordinate the delivery of medications for Mattie to our home today, because they are afraid that if they did not do it today, Mattie would not get it in time if he does go home tomorrow. Certainly going home would be nice, but I also have to tell you packing up again, after we just got here is a total killer. In addition, Mattie will most likely become neutropenic next week and land up right back in the hospital. This is a torture beyond belief on so many levels. Yes I realize it is the Christmas season, tomorrow is Christmas Eve and the next day is Christmas, but to me, it feels like another day in this never ending journey. In addition, we have learned that Mattie's follow up CT scan to monitor the lesions in his lungs is scheduled for January 8th at 10am. This date weighs heavily on my mind. Living life from one scan to the next, one chemo drug to the next, and from one doctor to the next is not only frustrating but it further emphasizes the powerlessness we feel.
December 22, 2008
Monday, December 22, 2008
Monday, December 22, 2008
Quote of the day (thank you Camille!): "If you take a flower in your hand and really look at it, it's your world for the moment." ~ Georgia O'Keefe
Mattie and I had a late night on sunday. Mattie did not fall alseep until about 12:30am and once he was down, I worked on the blog and then wrote Christmas cards of thanks to all of Mattie's nurses and some staff members. I felt the need to do this, because I can't think clearly in the hospital and usually wouldn't have time to write anything coherently during the daytime hours. When we woke up today, one of the first things I did was open up a very special gift basket sent to me by Kathryn (a SSSAS upper school mom). The basket was filled with such meaningful and moving gifts, everything from a booklet about a prayer service given on Mattie's behalf to rosary beads from the Vatican. The St. Francis coin was so special to receive along with the worry stone. Kathryn gave Mattie several gifts as well, and we plan on opening those soon!
This morning our goal was to try to get to the hospital by 9:30am. That did not happen, since each time I leave for the hospital, I feel like I am moving our home from one place to another. This time was more cumbersome, because I wanted to bring Christmas things with us! With Mattie in a wheelchair still, there is no way on earth I can bring him to the hospital without help and a second car. Mattie's wheelchair alone weighs a ton and also takes up my trunk. My in-laws helped me get to the hospital today, and took every item I needed in their trunk. So that I only had to worry about Mattie and the wheelchair. That was a major help. As you know, it was downright frigid today in DC. Just moving outside was painful, much less trying to transport anything. Thank goodness I applied for a disabled parking permit from the District of Columbia. When I am with Mattie it is a lifesaver to have.
We brought Mattie to his room in the PICU, room 1. My favorite! I am being sarcastic, since it is the noisest room in the unit! While I was getting Mattie situated, Barbara and Don (my in-laws) transported every bag in their trunk to our room. They stayed with me the whole day and helped in every way possible by entertaining Mattie and distracting him so that I could talk with the doctors and nurses. Which today, took up half of the day. There were many mishaps, and I needed an extra hand with Mattie, so that I could get things done.
We want to thank the Fortune family for a wonderful lunch. It fed all of us, and saved us a trip out in the cold weather to get food. The dessert you brought us was amazing, something sinful from Starbucks, with vanilla frosting and cranberries on top! I appreciate Danelle bringing all the gifts we are distributing to the hospital as well. We can't thank you enough for all your support and for helping take some stress out of our day. Mattie had a special visitor today, Bob Weiman. Bob is the head of the lower school at SSSAS. Bob has many gifts and talents, and he was generous to share part of his day off with us. Bob taught Mattie three great magic tricks today. Several of which Mattie later performed for his nurses. Bob even showed Mattie how to create a jib jab greeting card. It was hysterical. We got to watch an automated JJ and other Mattie favorites. I was jumping in and out of the room all afternoon, so having Bob around also helped Mattie focus, be engaged, and have fun while I couldn't be there.
Well if I were you, I would be asking, what was she doing? Where to begin. The thinking was to get Mattie to the hospital this morning as early as possible to start the hydration process and blood work to qualify for chemo. Normally we get started later in the day, and today we made an effort to be at the hospital by 10am. Well the hours started rolling by, and one thing led to another, and needless to say Mattie did not start chemo until 6:30pm. Do you love it? We waited from 10am until 6:30pm! WOW! Why scramble around in the morning, just to sit and wait? What started the cascade of issues was our nurse, Tricia explained to me the chemo process we would be following today. Tricia knows I ask her this question each time, and in fact I would ask any nurse to review the process with me before they infuse anything into Mattie. So today Tricia mentioned a drug called Dexroxazone. She described it to me as a heart protector. But I did not recognize or recall this drug name, and I told Tricia that Mattie never received this drug before. So I started to get concerned! If he really needed this drug, why did he not get this drug the first two times he received Doxorubicin and Cisplatin? All of this raised enough doubt in my head, that I felt the need to follow up on this. We spoke to Dr. Myers who basically explained that Dexroxazone wasn't available anywhere in the country. It is backlogged and not being made. Second he said that Mattie isn't getting a high enough cumulative dosage of doxorubicin/cisplatin to be of concern for developing a serious heart issue. Got to love it, no? As if any sort of heart damage would be acceptable. So he told me that I should trust him and Dr. Toretsky. If they thought Mattie needed this drug, they would have given it to him. Now that is the kiss of death and major red flag in my book. When you tell me that I should have such blind trust in such a decision. That trust is frankly earned and so far what I have learned from this process is to trust NOTHING. Verify everything! So I decided to call Dr. Shad, the director of the Lombardi clinic. I usually turn to Dr. Shad, when all else fails or I am in a quandry. Dr. Shad told me she would look into this issue and call me right back.
Dr. Shad let me know that Dexroxazone was not in Mattie's initial chemo protocol (the osteosarcoma clinical trial). This would explain why Mattie did not get this medication during the first two doxorubicin infusions. However, since we changed treatments, and removed Mattie from the clinical trial, we are following a different road map and the new road map calls for the use of dexroxazone. Dr. Shad assured me that NO where in the country is dexroxazone being made and people do not have access to it. I asked her what happens to people on high doses of cisplatin and doxorubicin? She said that their dosages are lowered to more tolerable levels until dexroxazone can be manufactured for the patient. The whole thing sounds absolutely crazy! Got to wonder about this drug company! I guess what truly plagues me about today was the simple fact that I was not alerted by the doctors of this change (that dexroxazone is part of the new protocol and wasn't a part of the previous protocol, and better yet, that Mattie wouldn't be getting this drug because it isn't available). I don't think this is a nurse's job to have to deliver me this news. I also do not care for the attitude that a parent should be kept in the dark, that a doctor makes the decision and delivers information on a need to know basis. That REALLY DOESN'T WORK FOR ME! Not when we are talking about Mattie's health. I have to live with whatever treatment decisions doctors make, and that is just it, for doctors they are decisions but for me these decisions impact my son's life and quality of life. So what has this little run around accomplished today? It has succeeded in proving that I have to be nosey, that I can't trust what is going on in the background, and I always have to ask questions. This also proves to me the beauty of quality nursing staff. I have utmost respect for our oncology nurses and their honesty, concern, and forthrightness are valued and respected on the part of the consumer. As Peter tells me all the time, a hospital is a business, and ultimately answers to the consumer. Interesting!
At 6:30pm, Mattie's chemo began. Mattie was sitting on the floor playing with boats (that Jenny and Jessie made out of tape for him today.... thank you, because I was desperately searching for boats for him to float!) and Tricia got down on the floor to start the chemo. I snapped a picture of her in motion. She is an example of a fine nurse and person who goes above and beyond the call of duty! Pay close attention to those fabulous thick blue rubber gloves Tricia is wearing. It makes you understand the dangerous nature of the medicines going into Mattie's body. Mattie started doxorubicin tonight (which takes about 30 minutes to infuse), that will be followed by cisplatin (for four hours). Doxorubicin is red in color, and this red color gets secreted when Mattie's goes to the bathroom. It is interesting to see your son's urine turn a funny red color. This whole infusion is a 48 hour process, and doxorubicin and cisplatin will be adminstered again tomorrow evening at 6:30pm.
We received a wonderful dinner tonight from the Putnam's! Thank you for the wonderful pasta and a fantastic salad. I couldn't get enough of the salad and Mattie had two plate fulls of pasta! Thank you for supporting us as we transitioned back to the hospital. We had a good time delivering gifts today. Several of the nurses are already wearing Mattie's wrist band which says,"Stomp it out for a Mattie miracle!"That meant a lot to me to see them wearing this gift and it is our hope that they enjoy all the gifts and realize how much we value their professionalism.
I received two e-mails today that I would like to share with you. The first one is from my colleague and friend, Camille. Camille spearheaded a fundraising effort for Mattie with our local mental health counselor association. Camille wrote, "Just wanted you to know we had a good day here as well. First let me say I love the picture of Mattie with the wreath!!! Yesterday at the Networking, Fundraising, Holiday Gathering we had a 50-50 raffle, a silent auction, and a basket for cash and checks. The winners of the 50-50 donated their winnings as well. All five pieces in the auction went. So far, we have collected more than $650. There were also cards, prayers and positive energy for you, Peter, and Mattie. Some felt that donating reflected the meaning of Christmas. Some folks who couldn't make it, asked about donating and may donate through the blog or send it directly to you."
The second e-mail is from Debbie, Mattie's art teacher. Debbie wrote, "I had an interesting experience today at the Gem show in Chantilly. I was speaking with a salesman about his beads when my eyes filled with tears. He said that he could not do better on the price. I laughed a little and told him that it was my Mattie that was making my eyes tear not his prices. With that he took my hands and began to pray to God for Mattie. Imagine, right in the middle of a quagmire of people grabbing stuff like it was the last time they could shop! His voice was really loud and I started to shake. Anyway, his words were just beautiful." What can you say about a stranger who feels compelled to pray for your son, a person he never met? Other than leave you with great appreciation and admiration for his sensitivity and thoughtfulness.
We want to thank Peter's parents for helping us over the last four days. Mattie enjoyed connecting with them and I enjoyed a moment to myself to do the normal things I used to take for granted. I will be reflecting on these four days over the course of this week. As I sign off for the evening, I want to wish our readers who celebrate the Festival of Lights a very happy Chanukah!
Quote of the day (thank you Camille!): "If you take a flower in your hand and really look at it, it's your world for the moment." ~ Georgia O'Keefe
Mattie and I had a late night on sunday. Mattie did not fall alseep until about 12:30am and once he was down, I worked on the blog and then wrote Christmas cards of thanks to all of Mattie's nurses and some staff members. I felt the need to do this, because I can't think clearly in the hospital and usually wouldn't have time to write anything coherently during the daytime hours. When we woke up today, one of the first things I did was open up a very special gift basket sent to me by Kathryn (a SSSAS upper school mom). The basket was filled with such meaningful and moving gifts, everything from a booklet about a prayer service given on Mattie's behalf to rosary beads from the Vatican. The St. Francis coin was so special to receive along with the worry stone. Kathryn gave Mattie several gifts as well, and we plan on opening those soon!
This morning our goal was to try to get to the hospital by 9:30am. That did not happen, since each time I leave for the hospital, I feel like I am moving our home from one place to another. This time was more cumbersome, because I wanted to bring Christmas things with us! With Mattie in a wheelchair still, there is no way on earth I can bring him to the hospital without help and a second car. Mattie's wheelchair alone weighs a ton and also takes up my trunk. My in-laws helped me get to the hospital today, and took every item I needed in their trunk. So that I only had to worry about Mattie and the wheelchair. That was a major help. As you know, it was downright frigid today in DC. Just moving outside was painful, much less trying to transport anything. Thank goodness I applied for a disabled parking permit from the District of Columbia. When I am with Mattie it is a lifesaver to have.
We brought Mattie to his room in the PICU, room 1. My favorite! I am being sarcastic, since it is the noisest room in the unit! While I was getting Mattie situated, Barbara and Don (my in-laws) transported every bag in their trunk to our room. They stayed with me the whole day and helped in every way possible by entertaining Mattie and distracting him so that I could talk with the doctors and nurses. Which today, took up half of the day. There were many mishaps, and I needed an extra hand with Mattie, so that I could get things done.
We want to thank the Fortune family for a wonderful lunch. It fed all of us, and saved us a trip out in the cold weather to get food. The dessert you brought us was amazing, something sinful from Starbucks, with vanilla frosting and cranberries on top! I appreciate Danelle bringing all the gifts we are distributing to the hospital as well. We can't thank you enough for all your support and for helping take some stress out of our day. Mattie had a special visitor today, Bob Weiman. Bob is the head of the lower school at SSSAS. Bob has many gifts and talents, and he was generous to share part of his day off with us. Bob taught Mattie three great magic tricks today. Several of which Mattie later performed for his nurses. Bob even showed Mattie how to create a jib jab greeting card. It was hysterical. We got to watch an automated JJ and other Mattie favorites. I was jumping in and out of the room all afternoon, so having Bob around also helped Mattie focus, be engaged, and have fun while I couldn't be there.
Well if I were you, I would be asking, what was she doing? Where to begin. The thinking was to get Mattie to the hospital this morning as early as possible to start the hydration process and blood work to qualify for chemo. Normally we get started later in the day, and today we made an effort to be at the hospital by 10am. Well the hours started rolling by, and one thing led to another, and needless to say Mattie did not start chemo until 6:30pm. Do you love it? We waited from 10am until 6:30pm! WOW! Why scramble around in the morning, just to sit and wait? What started the cascade of issues was our nurse, Tricia explained to me the chemo process we would be following today. Tricia knows I ask her this question each time, and in fact I would ask any nurse to review the process with me before they infuse anything into Mattie. So today Tricia mentioned a drug called Dexroxazone. She described it to me as a heart protector. But I did not recognize or recall this drug name, and I told Tricia that Mattie never received this drug before. So I started to get concerned! If he really needed this drug, why did he not get this drug the first two times he received Doxorubicin and Cisplatin? All of this raised enough doubt in my head, that I felt the need to follow up on this. We spoke to Dr. Myers who basically explained that Dexroxazone wasn't available anywhere in the country. It is backlogged and not being made. Second he said that Mattie isn't getting a high enough cumulative dosage of doxorubicin/cisplatin to be of concern for developing a serious heart issue. Got to love it, no? As if any sort of heart damage would be acceptable. So he told me that I should trust him and Dr. Toretsky. If they thought Mattie needed this drug, they would have given it to him. Now that is the kiss of death and major red flag in my book. When you tell me that I should have such blind trust in such a decision. That trust is frankly earned and so far what I have learned from this process is to trust NOTHING. Verify everything! So I decided to call Dr. Shad, the director of the Lombardi clinic. I usually turn to Dr. Shad, when all else fails or I am in a quandry. Dr. Shad told me she would look into this issue and call me right back.
Dr. Shad let me know that Dexroxazone was not in Mattie's initial chemo protocol (the osteosarcoma clinical trial). This would explain why Mattie did not get this medication during the first two doxorubicin infusions. However, since we changed treatments, and removed Mattie from the clinical trial, we are following a different road map and the new road map calls for the use of dexroxazone. Dr. Shad assured me that NO where in the country is dexroxazone being made and people do not have access to it. I asked her what happens to people on high doses of cisplatin and doxorubicin? She said that their dosages are lowered to more tolerable levels until dexroxazone can be manufactured for the patient. The whole thing sounds absolutely crazy! Got to wonder about this drug company! I guess what truly plagues me about today was the simple fact that I was not alerted by the doctors of this change (that dexroxazone is part of the new protocol and wasn't a part of the previous protocol, and better yet, that Mattie wouldn't be getting this drug because it isn't available). I don't think this is a nurse's job to have to deliver me this news. I also do not care for the attitude that a parent should be kept in the dark, that a doctor makes the decision and delivers information on a need to know basis. That REALLY DOESN'T WORK FOR ME! Not when we are talking about Mattie's health. I have to live with whatever treatment decisions doctors make, and that is just it, for doctors they are decisions but for me these decisions impact my son's life and quality of life. So what has this little run around accomplished today? It has succeeded in proving that I have to be nosey, that I can't trust what is going on in the background, and I always have to ask questions. This also proves to me the beauty of quality nursing staff. I have utmost respect for our oncology nurses and their honesty, concern, and forthrightness are valued and respected on the part of the consumer. As Peter tells me all the time, a hospital is a business, and ultimately answers to the consumer. Interesting!
At 6:30pm, Mattie's chemo began. Mattie was sitting on the floor playing with boats (that Jenny and Jessie made out of tape for him today.... thank you, because I was desperately searching for boats for him to float!) and Tricia got down on the floor to start the chemo. I snapped a picture of her in motion. She is an example of a fine nurse and person who goes above and beyond the call of duty! Pay close attention to those fabulous thick blue rubber gloves Tricia is wearing. It makes you understand the dangerous nature of the medicines going into Mattie's body. Mattie started doxorubicin tonight (which takes about 30 minutes to infuse), that will be followed by cisplatin (for four hours). Doxorubicin is red in color, and this red color gets secreted when Mattie's goes to the bathroom. It is interesting to see your son's urine turn a funny red color. This whole infusion is a 48 hour process, and doxorubicin and cisplatin will be adminstered again tomorrow evening at 6:30pm.
We received a wonderful dinner tonight from the Putnam's! Thank you for the wonderful pasta and a fantastic salad. I couldn't get enough of the salad and Mattie had two plate fulls of pasta! Thank you for supporting us as we transitioned back to the hospital. We had a good time delivering gifts today. Several of the nurses are already wearing Mattie's wrist band which says,"Stomp it out for a Mattie miracle!"That meant a lot to me to see them wearing this gift and it is our hope that they enjoy all the gifts and realize how much we value their professionalism.I received two e-mails today that I would like to share with you. The first one is from my colleague and friend, Camille. Camille spearheaded a fundraising effort for Mattie with our local mental health counselor association. Camille wrote, "Just wanted you to know we had a good day here as well. First let me say I love the picture of Mattie with the wreath!!! Yesterday at the Networking, Fundraising, Holiday Gathering we had a 50-50 raffle, a silent auction, and a basket for cash and checks. The winners of the 50-50 donated their winnings as well. All five pieces in the auction went. So far, we have collected more than $650. There were also cards, prayers and positive energy for you, Peter, and Mattie. Some felt that donating reflected the meaning of Christmas. Some folks who couldn't make it, asked about donating and may donate through the blog or send it directly to you."
The second e-mail is from Debbie, Mattie's art teacher. Debbie wrote, "I had an interesting experience today at the Gem show in Chantilly. I was speaking with a salesman about his beads when my eyes filled with tears. He said that he could not do better on the price. I laughed a little and told him that it was my Mattie that was making my eyes tear not his prices. With that he took my hands and began to pray to God for Mattie. Imagine, right in the middle of a quagmire of people grabbing stuff like it was the last time they could shop! His voice was really loud and I started to shake. Anyway, his words were just beautiful." What can you say about a stranger who feels compelled to pray for your son, a person he never met? Other than leave you with great appreciation and admiration for his sensitivity and thoughtfulness.
We want to thank Peter's parents for helping us over the last four days. Mattie enjoyed connecting with them and I enjoyed a moment to myself to do the normal things I used to take for granted. I will be reflecting on these four days over the course of this week. As I sign off for the evening, I want to wish our readers who celebrate the Festival of Lights a very happy Chanukah!
December 21, 2008
Sunday, December 21, 2008
Sunday, December 21, 2008
Today was what I would call a great day! Wow, did I actually say that?! It clearly must be someone else writing this blog, or my alter ego. I jest, it is me, and I am happy that I haven't lost the ability to still assess a good day and to also be able to enjoy aspects of my life. This weekend in a way was magical. Not that Mattie's illness did not weigh on my mind or Peter's mind, because it always does. We live and breathe cancer each day. Mattie and I spent the time together on the first floor of our home on saturday night. Mattie got to bed after 12:30am. I stayed up to work on the blog and and went to bed after 2am. Mattie got up at 6am to go to the bathroom and at that time, I flushed out his central lines since his IV hydration was complete. It was hard for Mattie to get back to sleep at that time, so he was basically up!
When Mattie woke up his first question of course was, "Did the tooth fairy come? Did she leave me something?" Of course the tooth fairy did not disappoint. She left a string of Christmas lights all wrapped up with a big gold bow. Mattie added the lights to his Christmas village display that he has created. As you can see there is a lot going on in this display, a Christmas train, a lego tunnel, a remote control car, a poinsettia, wooden animals, his handmade nativity scene, and of coursem Mattie's favorite thing now, Wall-E. So the tooth fairy made Mattie very happy this morning.
We then headed by car to the Mall/White House to see the Nation's Holiday display. The huge Christmas tree was incredible, as well as the the miniature trees from all 50 states and US territories which surrounded the Nation's tree. In addition to the trees, there were lovely Christmas trains running around the trees that caught the attention of people of all ages. In addition, Mattie loved the Yule log which was burning and keeping all of us warm. The largest logs I have ever seen formed this display. I captured several wonderful pictures of this adventure that I would like to share with you.
Quote of the day (thanks Lisa, my sister-in-law):
"When you are in hell, keep going. Seems to mirror your approach!" ~ Winston Churchill
Today was what I would call a great day! Wow, did I actually say that?! It clearly must be someone else writing this blog, or my alter ego. I jest, it is me, and I am happy that I haven't lost the ability to still assess a good day and to also be able to enjoy aspects of my life. This weekend in a way was magical. Not that Mattie's illness did not weigh on my mind or Peter's mind, because it always does. We live and breathe cancer each day. Mattie and I spent the time together on the first floor of our home on saturday night. Mattie got to bed after 12:30am. I stayed up to work on the blog and and went to bed after 2am. Mattie got up at 6am to go to the bathroom and at that time, I flushed out his central lines since his IV hydration was complete. It was hard for Mattie to get back to sleep at that time, so he was basically up!
When Mattie woke up his first question of course was, "Did the tooth fairy come? Did she leave me something?" Of course the tooth fairy did not disappoint. She left a string of Christmas lights all wrapped up with a big gold bow. Mattie added the lights to his Christmas village display that he has created. As you can see there is a lot going on in this display, a Christmas train, a lego tunnel, a remote control car, a poinsettia, wooden animals, his handmade nativity scene, and of coursem Mattie's favorite thing now, Wall-E. So the tooth fairy made Mattie very happy this morning.
Mattie was scheduled to have occupational therapy today with Kathie. But Kathie called me and was sick. Kathie and I had a nice chat on the phone and Mattie looks forward to seeing Kathie soon when she gets better. But I thought Kathie's call spoke volumes about her. She is sensitive to Mattie being neutropenic, and did not want to expose him to any germs. Thanks Kathie! With that in mind, I also called Dr. Myers today. He is part of the oncology practice at Georgetown. We wanted to take Mattie to see some Christmas displays today, and we were contemplating Union Station or the National Botantical Gardens (which is a large and magnificent indoor structure). Something told me today to check with Dr. Myers before doing this. He did not think it was a good idea to take Mattie into such a large public place where he could be around others who are sick. So Dr. Myers suggested going to see the Nation's Christmas tree and display. It was actually a fabulous idea and all of us were excited by this. Today wasn't a frigid day, which made this outdoor adventure bearable.
Before we headed to the Nation's Mall, Mattie had a visit from Carrie and her amazing standard poodle, Jax. Jax is a show dog as well as very therapeutic. I called our front desk today to have them approve Carrie's visit since technically dogs are not allowed in our community. But thankfully the staff at our complex is on board with bringing anything in that will help Mattie. So Jax made it to our home and played with Mattie outside. Mattie got animated, he was moving around in his wheelchair and was even having wheelchair races with Jax (see the picture on the right). I tried to capture the spirit of the moment. Thank you Carrie for coming over, for the wonderful homemade cookies (which reminded me of cookies my Grandma used to bake during the holidays), and for introducing Mattie to Jax. Enjoy the pictures!
We then headed by car to the Mall/White House to see the Nation's Holiday display. The huge Christmas tree was incredible, as well as the the miniature trees from all 50 states and US territories which surrounded the Nation's tree. In addition to the trees, there were lovely Christmas trains running around the trees that caught the attention of people of all ages. In addition, Mattie loved the Yule log which was burning and keeping all of us warm. The largest logs I have ever seen formed this display. I captured several wonderful pictures of this adventure that I would like to share with you.
Grandma, Mattie (bundled up!), and Granddad
One of the wonderful train displays!
The White House decorated for Christmas!
Granddad, Peter, Mattie, and Vicki in front of the Nation's Christmas Tree and White House
After about an hour or so walking around outside, Mattie was getting cold, so we headed back to the car and drove home. Peter and I decided to go out to lunch today, and Peter's parents spent the afternoon with Mattie. At first it wasn't an easy transition out. Mattie did not want both Peter and I to leave, he started to cry and got very upset. So I explained to him that we needed to go out but that we would be back. We always come back. That did not seem to impact him much. So then I tried to explain to him why it was important for Peter and I to go out together, rather than separately. I made the analogy of a playdate. I asked Mattie if he wanted to go on a playdate with just himself, or would he prefer to go on a playdate with a friend? I explained to him that Peter and I enjoy spending time together, and for us going out is like a playdate. I told him that adults need playdates too, not just kids. I could see him thinking through that one. He did understand our need to go out, but wasn't happy about it.
Peter and I went out to lunch, and while we were out we connected with Ann and Bob and had lunch with them. It is ironic, before Mattie got sick, Ann asked me to find a time for all four of us to go out together, but one thing led to another and I never found a time to do this. Sad commentary, but I needed Mattie's illness to get me to slow down, and appreciate a moment and those around me. Goodness, I have been surrounded by amazing people all this time, and frankly I never gave it a moment's thought. I can tell you though I am seeing much clearer these days. We had a wonderful time at lunch and not only are we united with the Henshaw's on Mattie's care, but on so many other viewpoints about life. It is always a gift when you feel like you have connected with someone, and today was another one of those moments for me this weekend. It has been a weekend of true friendship, support, and a renewal of spirit. All I can say is I wish monday would never come.
After lunch, Peter and I drove back to my least favorite place to be now, Toys R Us. We needed to return an opened DVD case. This was a TRUE experience. We spoke to three people and quickly knew we had to escalate our request up to a manager. Finally the manager had a heart and took back this high definition Wall-E DVD. I will never make that mistake again. We then drove home, but frankly I wasn't able to bring myself to going home. So Peter dropped off the videos on our deck, his mom picked them up, and we went to my parent's apartment and literally slept on the couch for over an hour.
We want to thank Kristin E. for dropping off dinner tonight. The lasagna was a hit and you were so thoughtful to put together a wonderful cookie kit for Mattie. I look forward to doing this with him. The truffles are absolutely sinful, where on earth did you find them? I am sorry I missed you tonight, but thank you so much for your thoughtful care package! After dinner, we helped to celebrate Grandma's birthday. Mattie placed birthday candles on her cake and helped me bring it in and sing to her. I captured them blowing out the candles together. They had a good time opening gifts, and Barbara really loved the bracelet Mattie made for her at the hospital.
It is now 12:30am, and Mattie is finally sleeping. Peter and I cleaned him up for his hospital trip tomorrow, and we changed his central line dressing as well. We administered all medications and started his IV hydration. After all of this, you wonder how much more do you have to give. We tried to assess what needs to come to the hospital with us too, since if we are there for Christmas, we want the hospital room to feel Christmas like for Mattie. So now I am beginning to wind down, but I am in the midst of writing cards to all of Mattie's nurses. I know I can't do this in the hospital, and I need a minute to think clearly without being pulled in twenty directions. So before I sign off for today, I wanted to share an e-mail I received from a former student, who is now the director of guidance at a high school in Montgomery County. Theresa wrote, "I told some of my students about Mattie and they decided to do some fundraising when we get back to school in January. I hope it will be a success. We are going to have a Mattie day, so everyone can wear Mattie's favorite color and hopefully we will be allowed to have a coin/jar fund in several classrooms so students can put their spare change in it for Mattie. Our Key Club has also announced to the school on Friday that they are making Christmas Cards for Mattie. I hope to have them all sent to you by Monday. I know these are just small gestures but I hope Mattie will appreciate them. Hopefully I can get some pictures of the kids in his favorite color and I will email them to him directly. He is a very brave boy. He is amazing. Also I told my department about Mattie and we normally adopt a family and we decided that the Northwest Counseling Department would adopt the Brown family for the holidays. I will be making a donation in their name to Mattie's fund by Tuesday. These are just minimal things but I hope they will help Mattie during the holidays." What can you say to all this kindness and generousity? Thank you Theresa for walking this journey with me, even though your family is also being affected by this horrible disease.
I end tonight with a saying that Debbie Pollak's (Mattie's art teacher) grandmother used to say, "if you make just one person smile, you have had a good day." From my assessment so many of you helped to bring a smile to my weekend, that you should feel like you had a good and successful day!
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