time to enjoy where we are." ~ From Calvin & Hobbes
The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://www.mattiemiracle.com/ and take some time to explore the site.
We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:
.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!
December 27, 2008
time to enjoy where we are." ~ From Calvin & Hobbes
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
December 25, 2008
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.
December 24, 2008
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.
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
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.
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!
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.
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.