Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: 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!

A Remembrance Video of Mattie

September 20, 2008

Saturday, September 20, 2008

Saturday, September 20, 2008


THANKS TO ALL OF YOU FOR TWO MAJOR FUNDRAISER SUCCESSES!

This morning I woke up with the notion that I could not let this day go by without attending the carwash. I hadn't thought about going because I was so focused on Mattie this week. But when my friend, Catherine stopped by this week to visit us, she asked me if I was planning on going. That question stuck in my mind, and I am happy it did. Thank you Catherine for suggesting this to me. Before I report about the amazing and wonderful experience of the carwash, I want to share with you a story sent to me by Tyler Gehrs.

Tyler is Charlotte's (Mattie's buddy or as he sometimes calls her, his girlfriend) brother. Tyler is a very special young man, I could tell this when I met him several months ago. He is a high school senior, who is very mature, well spoken, and clearly intelligent. Tyler attends a boarding high school in Delware called Saint Andrew's School. Tyler used his own initiative, energy, and passion for helping Mattie to energize his entire school community. He hosted a bingo fundraiser at his school on friday, and Peter and I are completely in awe of what Tyler accomplished in only one week. Tyler was able to raise over $7000 for Mattie. Tyler tells me that Saint Andrew's loves Mattie, well I can assure you we love Saint Andrew's. I am thoroughly impressed with the caliber of students it produces and more importantly Tyler and his classmates show me the power of determination, hard work, community, and love. I thank Tyler, his classmates, and his school's administration for helping support Mattie's treatment. What can you say to a school who is in love with your child? After all as parents it is natural that Peter and I love Mattie, but what compells 280 high schoolers to feel this sense of attachment and love? All I can say is these are our leaders of tomorrow, and they are already rising to the occasion and showing us we have hope for our future. Tyler's letter and You Tube link are below. Tyler and Saint Andrew's, we will be forever grateful!
_________________________________________
Dear Mr. and Mrs. Brown,
A week ago, I introduced Mattie and his story to the Class of 2009 here at Saint Andrew's. I told them about Charlotte and Mattie's friendship, explained Mattie's condition, and showed them the blog. I also introduced my idea for a fundraiser at Saint Andrew's to benefit Mattie: a bingo night. As soon my peers heard this, they jumped at the opportunity to help. What had started as a quick meeting turned into a thirty-minute brainstorm to find every way that we could help.
After receiving approval from the headmaster, I set the date for Friday, September 19th. Following this initial meeting, I worked with my classmates to make this the most appealing and successful fundraiser our school has ever seen. As my peers' band volunteered to perform a few of their songs for Mattie, the event evolved. My older sister, Shannon, helped me pick out some unique prizes that Saint Andrew's students would enjoy. One of my classmates and I rode around town on bikes to ask some local restaurants to donate a few gift cards that could be given away as prizes. In the end, our prizes were: one batch of cookies every week for the remainder of fall, late night trips with a teacher to go out to eat, no room inspection or breakfast sign-in for a week, seven of the best faculty dinners for the winner and four friends, 250 dollars worth of gift cards to local businesses, and a personal dinner from the school's chef.

On Thursday, I gave an announcement to the entire school community outlining Mattie and Charlotte's friendship, Mattie's diagnosis of cancer and his treatment. I got a feeling before I even told anyone about bingo or prizes, that they would have done anything to help. As I was walking back from this school meeting, students who I have never had a conversation with were approaching me to learn more about Mattie and how to donate. I was completely overwhelmed with these questions; it was amazing. I sent out an email with more information about the event and included more on Mattie as well as a link to the blog. All the way up to the event, people wanted to know more about Mattie. I could tell that everyone sincerely cared.
The event started at about 9:30 p.m., when students were released from study hall and began coming over to the performance hall, where it was being held. The student band was playing as students entered and they really got everyone excited. By the time the bingo started almost every student on campus had a bingo card. The following games of bingo were filled with excitement. For me, there were two highlights to the night that you can watch here http://www.youtube.com/watch?v=uq0dIB3eEGE. I conceived the idea that everyone said "Hi" to Mattie and we could send it to him. I expected everyone to say it, scream for a few seconds, and then sit down. I was pleasantly surprised when everyone went completely wild and the screaming lasted for almost a whole minute. This showed me that Saint Andrew's really does love Mattie. The second moment was a performance that a friend of mine, named James, gave. James is an extremely talented beat-boxer. Every time that he performs, everyone is blown away. James dedicated a new song to Mattie and it was very touching, I hope that Mattie enjoys watching James as much as we do. More videos from the event will be online soon.
The four bingo games ended almost forty-five minutes later than they were supposed to and far past the underformer's bedtimes. Nobody seemed to care about this, not even the faculty. Everyone was so overcome with this spirit for Mattie that nobody wanted to leave. When I asked the Dean of Students how quickly I should rush students back to dorm, she simply pushed me away. Five of my friends and I piled into my dorm room to count up the total amount of money that we raised. We were all astonished as we went through it all. With around 280 students, we raised 7,071 dollars for Mattie. Out of the six of us in my room, at least one usually has something to say. When we got this number the room was silent; we were blown away. Even though I was the only one there who has met Mattie, Saint Andrew's has fallen in love with him. All of the students feel a very strong bond to Mattie even though he was a stranger only two days ago. Our thoughts and prayers will be with him forever. His courage has inspired all of us.
Sincerely, Tyler Gehrs

___________________________________________
This morning my parents came to stay with Mattie in the hospital while we headed off to the carwash. They originally were going to go to the carwash on our behalf, but the more Peter and I thought about it, the more we realized we needed to be there. Thanks Mommy and Daddy for making this possible! Mattie wanted to go to the carwash too, since he loves washing cars, but we promised to take pictures and share them with him. He seemed to understand. Mattie was still beaming from Tyler's You Tube presentation, so he was in a good mood. His reaction to Tyler's e-mail was "boy I am really getting a lot of attention now." It was funny the way he said it, because it was almost as if he couldn't believe so many people could care about him.

The carwash was a surreal experience. Someone could have tried to describe the event to me, but I really had to be there for myself to see the volume of people who came out to support Mattie. It was downright incredible. The parking lot and street were lined up with cars, and what impressed me was everyone was patient and in the mood to support a valuable cause. Besides the incredible volume, there was a captivating feeling in the air, a feeling that you can't really describe or quantify, but something that you can feel, which is so intoxicating that you want to try to bottle it up and savor it for all the hard days we have in store for us. The feelings in the air were of great admiration, love, and compassion. It was very clear to me today, that Mattie is very loved and very blessed to have all of you in his life. I am happy Peter and I could attend, because we came back empowered after talking to so many of you. Each of you shared how our situation has touched your life, and for several of you, you mentioned how this has changed your life for the better. I had the opportunity to talk with a dad today, who basically told me that my blogs have caused him to re-evaluate his priorities in life. I have had people tell me they are glued to the blog and religiously read it and thank me for sharing my feelings very openly. That by doing this and standing out on a limb, this has caused them to be open to being more vulnerable to letting others into their lives. At times today, I felt like I was attending a memorial service of my life. Now you may be asking what on earth is she talking about? Well as you are aware, during a memorial service, people get up and give tributes about you, and for most people they aren't lucky enough to be present (at least in the earthly way) for such tributes. But today, I heard feedback about myself and my family, that perhaps I wasn't prepared to hear, or at least not this early in my life. I left feeling very good about the life I have lived so far, and I will take these feeling and powerful words shared with me through this cancer journey.
The carwash volunteers were amazing. Joan Holden (SSSAS' head of school) was washing cars and there to provide her full support as was Bob Weiman (SSSAS' lower head of school). Thank you Joan and Bob for promoting this event at SSSAS and for leading by example. Mattie's kindergarten teacher, Leslie Williams was in attendance for the entire event snapping pictures and taking videos for Mattie. Thank you Leslie! Several SSSAS team coaches, athletic directors, and team members were there washing and drying cars. In fact, Coach Tillson (Head Soccer Coach) hand delivered to Peter and I a signed soccer jersey (with all the SSSAS soccer team players' signatures) and shorts. Thank you for this special gift. Coach Dave and his family were there to support Mattie, as well as Tricia Lyons (Upper School Service Learning Coordinator). Several of my GW students were present and working hard on Mattie's behalf as well. Thanks Katie and Alexandra for bringing your girl scout troop to the event, and for Zachary sharing this special bottle cap with Matite. This was an event for all ages, and there were even preschoolers down on their hands and knees washing cars. It was a precious sight to see. A special thank you to Johnny P. and Ann for coordinating this amazing event. When Ann called me tonight to tell me that the event generated over $6000, I was stunned. Please know how grateful we are Ann and Johnny for all your coordination. In a matter of two days, Mattie has generated a $13,000 fund to support his treatment. Below you will see some pictures we captured from today. I thank you all, and know that you made my family feel very special and honored today.

Thank you Charlotte for coming by the hospital this afternoon. Thanks for the Scooby glow in the dark stickers and the educational learning game. We will get a lot of use out of that. The funny part about this visit was Mattie was chasing Charlotte down the hallway with his IV pole in tow, trying desperately to kiss her. It was thoroughly amusing to witness.
On the electronic front, thank you Kim, Susan, and Emily W. for the wonderful e-cards and
Kathryn Boyd Loftus (her son Matt, a senior, helped at the carwash and is having a mass at Holy Trinity in Mattie's honor), Dianne C., Wayne H., Jill C., and Beth and Charles for your e-mails. Beth, thank you for a wonderful dinner and for the spinny robots. Mattie loves them!
As I close tonight, we are still in the hospital. The criteria for leaving is that Mattie needs to be able to eat and drink something. Mattie is refusing all liquids. I was able to give him three teaspoonfuls of water tonight, but he won't drink anything else, and believe me I have tried all sorts of things. He says he is afraid of vomiting and also his stomach is full. I am trying to see if it is really this, or a combination of fear and control (he doesn't have control over anything else in his life, other than what he consumes). Pray that tomorrow Mattie eats and drinks, so we can be released from the hospital. Lastly, the next issue arose tonight. Both of Mattie's lumens (or central lines) got clogged tonight. We can't get medicine or hydration in or out of the lines. A major problem indeed! Our nurse has put a high concentration of heparin in the lines tonight in hopes of thinning out any blood that has pooled in the ends of the central line. Another thing we hope gets resolved by tomorrow.
Goodnight and thank you for making our day such a memorable and blessed one!



Left: Annie H. welcoming people to the carwash.



Right: The carwash team hard at work! Featuring many SSSAS soccer team members.





GW students: Melissa, Dona, Vicki, Carrie (Vicki's TA) and Robin



Right: Vicki and Susie















Left: Maddie G. hard at work on a tire!
Left: Great signs SSSAS first graders! Right: Liz C. and Carrie working hard at washing cars!



















Left: Danelle working the bake stand and collecting all the money from the carwash.




top: Sara Catherine, Catherine, and Johnny P. (the originator of today's fundraiser)

bottom: Peter, Elice (GW student), Vicki, and Honey (one of Vicki's supervisors at GW)




















Left: Vicki and Dona (GW Student)
Right: GW students hard at work: Mandy, Beth, and Maria



Left: our canine supporter, Jax! Thanks Carrie for bringing Jax. He was a major hit.

Right: Peter and Mark (our RCC friend)

Left: Leslie Williams (Mattie's kindergarten teacher on the far left - diligently taking pictures and videos of the event) on the far left with the Saints t-shirt, and Ann (Team Mattie coordinator) on the right in motion helping to make the event a success!

September 19, 2008

Friday, September 19, 2008

Friday, September 19, 2008

Last night before we settled down for the evening I mentioned that we had a visit from Meghan, one of Mattie's residents. Meghan talked with us about Ativan, and it was a very helpful dialogue. A little later Meghan presented us with a piece of paper. I expected the piece of paper to be medical related, but in fact it was not. Meghan observed two weeks ago that Mattie loves dinosaurs and she enjoyed watching him unearth pretend dino bones from some clay. Well the paper Meghan handed us was the name of a paleontologist from the Smithsonian. She called all over town looking for a professional who would be willing to talk with Mattie about dinosaurs, as well as give him a personal tour of the Natural History Museum. I was downright shocked. Shocked on so many levels. Shocked because here is a young lady that is TRULY busy. A medical resident's life is very challenging, and I can see she and others work around the clock. So the fact that she took the time to observe Mattie from a holistic side truly impressed me, and then she took the initiative to contact people all over DC. I don't know about you, but this has the markings of a great doctor to me. In fact, I told her all medical doctors should be as concerned about Mattie's educational and "human" side as she is, frankly the medical professional would be a better and stronger profession. Why we continue to separate out the mind, body, and spirit is so beyond me. When one is failing, so is everything else. You have to nuture the mind and spirit, because it can only help with the recovery process of the body. This is what is lacking in Mattie's care at the moment, there are no organized group activities in the hospital for Mattie. This may sound trite, but it isn't. When you take school and social structure away from a child, the results in my book aren't positive. I think Linda and her childlife team are outstanding, but they need the backing of the hospital and the support to really be able to accomplish what I think other hospitals are already doing. But I digress.

Today seemed like a blur to me. Mattie woke up with nausea and had a very slow morning. After dry heaving for hours, he finally took a morning nap. Later on in the morning he had a visit from his new buddy, Ann. Ann brought Mattie donuts, a joke book (very appreciated!), and a wonderful frog that when exposed to water gets transformed into a prince. This science experiment took Mattie's mind off his pains for a while, which was a wonderful thing! Which gets back to my previous point made above, the mind and spirit must be taken care of, otherwise, the only thing else to focus upon is sickness and pain. Which isn't productive! Thank you Ann for giving me a few minutes to get outside and have a change of scenery. I plan on enjoying your spinach dip tonight as well! Ann, as many of you have observed, is an incredible team motivator, and I would be remiss to not mention this. Ann has had cancer touch and take away her brother's life, and yet she finds the inner strength to come to the hospital, energized, willing to help, and hopeful about the future. Ann sent me a very meaningful e-mail today, which helped me see I am not alone and that she could relate to some of the feelings I am expressing.

Thank you Sylvia for coming today and dropping off dinner and lending support. It is nice to know that folks at GW are following Mattie's situation. Mattie had a full house today. My parents were here, Linda came back from vacation (we missed her!), Whitney (Linda's intern) visited, as did Jessie (our art therapist buddy), and Denise (our social worker). I also had a visit from Mattie's nutritionalist, Ellen. Poor Ellen, I practically snapped her head off when she walked in the room today. I think I build up a sense of anger during the day, especially after spending 5 days in the hospital, with people coming in and out of our room. They all mean well, and Mattie needs their support, but none the less, it is hard. But like all of us who are parents know, you put up with a lot of stuff to help your children and do what is best for them. However, when Ellen showed up, I was at my boiling point. I eventually calmed down Mattie who was vomiting and then went out in the hallway to talk with her. She was very patient and understanding and is really working on giving me ideas to help Mattie gain or stabilize his weight.

As many of you know tomorrow (saturday) is Mattie's carwash fundraiser. I can't get over the number of people volunteering and planning on attending. Peter and I are going to try and be there, but Mattie will still be in the hospital, and it may not be feasible for us to be there. But if not, then we will be there in spirit, and we can't thank all of you enough for supporting us. I hope you know whether we are there in person or not, we are thankful for all you are doing! Ann, let me know today that a check for $500 was sent to her for Mattie. The check came from a person in Hawaii, a person I do not even know. Simply amazing and we are truly grateful.

On the electronic front, thank you Allison F. and Lesley C. for the e-mail and Emily W. and Kim for the e-cards. I would like to end tonight with two e-mails I received today. One was from a man, I have never met. An RCC mom, Danelle, sent out a listserv message to her community about Mattie's carwash, and her neighbor, Wayne Hulehan responded. Wayne lost his wife to cancer, and he wrote to let me know that he plans on attending the carwash tomorrow and also that he just lit a candle in Mattie's honor at home and at the Calvary UMC. He also added Mattie to his church's prayer list in Rosemont, VA. What can you say to such a beautiful act of kindness? Other than thank you, and I know that when cancer touches your life, it seems to immediately bond you with anyone else impacted by this disease. The second e-mail I received was from Lesley Colognesi, a friend of my sister-in-law, Lisa. Again, Lesley and I have never met, but she is following Mattie's blog and wrote me a very meaningful e-mail today. I am sharing a few of her thoughts with you here. Lesley wrote, "While your students are not in formal classes with you this year, your lessons have broader stokes and the impact of your work goes deeper. I thank you for allowing strangers to visit Mattie's world daily. You have taught many how to parent well, love deeply and openly, and face a challenge head on." Thank you Lesley, words are powerful, and provide great comfort during this time.

It is funny, I have this song running over and over in my mind the past couple of weeks, and thought.... well this is just silly. But then I saw this song quoted at the bottom of Wayne H's e-mail today, and I thought.... YES it is very meaningful, and it is the only way I can think of to survive the day to day struggles of being a mom of a child with cancer. Thank you Wayne, it helped me to verbalize this!

Oh Dear Lord
Three things I pray
To see thee more clearly
Love thee more dearly
Follow thee more nearly
Day by day

September 17, 2008

Thursday, September 18, 2008

Thursday, September 18, 2008

This morning began with a visit from Jerrold. Jerrold works at the hospital and is a CT scan tech. Jerrold met Mattie five weeks ago when attempting to do a CT scan of Mattie, and has kept an eye on Mattie ever since. Jerrold is devoted to Mattie and when Mattie is in the hospital, he makes it his business to find a few minutes to come and play with Mattie. Today he brought Mattie a spiderman pen from his trip to Disneyworld. Jerrold is a special person, and I find he is a fine example of the wonderful people caring for Mattie.

After Jerrold left, Mattie and I were sitting on the floor playing with the trains Jenny gave him yesterday (thanks Jenny!). At one point, Mattie stopped, looked up at me and said, "Mommy I was born to die." How do you like that statement? How prepared are any of us to really answer such questions when our children ask? I must admit, I am getting better at handling these existential questions, but I can't say that this doesn't bother me or sadden me. Again, I tried to normalize what he was saying. I told him we were all going to die at some point in our lives, so that his statement was indeed accurate, but that he wasn't going to die now because we are getting all the right care to fight the bone bugs. I turned his statement into a joke and I told him I did not give him permission to die. He laughed and we continued playing.

Mattie had another rough day of vomiting. However, like I stood up to benedryl two weeks ago, Mattie stood up to Ativan today. Mattie told the residents today that he DID NOT want that medicine. So there was NO ativan administered today, despite having the vomiting we did not have the hyperactivity, agitation, and aggression. Mattie is learning, its seems, how to be an active participant in his healthcare. At around 3pm today, Mattie finally was exhausted and took a nap and rested peacefully until 5pm. At 5pm though, he woke up with nausea and is still vomiting as I type this blog. It is interesting though how Mattie seems to have paradoxical reactions to such drugs as Ativan and Benedryl (meaning that he reacts in the opposite way from what they are intended to do). On a side note, we just had a conversation with Meghan tonight (one of the residents). Meghan explained to us that sometimes Ativan is given to help patients who are addicted to alcohol during the recovery process. Ativan is a controlled substance administered by a healthcare provider and slowly helps patients who are withdrawing from alcohol. But Meghan explained that a person on Ativan can have similar behaviors and reactions as someone who is drunk. It did help make sense out of what we saw yesterday with Mattie.

Later in the day we had a visit from Joy and Catherine (two great RCC moms) who are tracking Mattie and supporting us through this process. They came today and delivered us some beautiful glazed donuts that Mattie got to frost himself! A treat for all of us. Thank you both for stopping by and of course for the chocolate! Joy and Catherine tried to convince me to get more rest and leave the hospital. However, for the first time I was able to verbalize one of the reasons why I couldn't do this. In all reality no amount of sleep or anything else for that matter, will help me feel better about what is happening to Mattie and our lives. I am not sure if that makes sense to you as a reader. I know I am not clinically depressed (and yes I feel I can assess this for myself quite accurately), yet I feel for the first time, I can relate to someone who has major depression. Nothing looks, sounds, or feels good anymore. It is almost like time is standing still and I am trapped in a world far removed from the rest of society. The world around me is functioning and thriving, and I am now just an observer of a small part of the world through Mattie's hospital window.

When Mattie woke up from his nap today, we had two other visitors. Danelle (a RCC mom) delivered us a tasty dinner and she had the special treat of seeing Mattie in the PJs she bought him. He loves his cowboy PJs! Then Tricia, one of Mattie's favorite nurses, came to visit him. Tricia was not on duty but came to the hospital to attend a meeting, and was nice enough to stop by, check on Mattie, and share her pictures of her new puppy, peanut with us. That was a special treat, and again representative of the loving hospital staff caring for Mattie.

On the electronic front, thank you Coach Frost (for some helpful advice about anti-emetics), Gail B., Kara Sandoval, and JJ (loved your puppy picture with your brothers and sisters) for your e-mails and Lorraine, Susan, Kim, and Karen for your great e-cards. Bob Weiman sent us a jibjab e-card today with Mattie's grandparents dancing. Georgetown's system is currently blocking my access to certain sites, so we look forward to seeing this e-card when we get home. I am sure Mattie's grandparents will love this! I received a lovely phone call today from a recent graduate of GW's counseling program, Emily W. I have gotten to know Emily quite well over the last couple of years and she is very fond of Mattie. She is brainstorming with Carrie, ideas for Mattie's walk this spring. Emily came up with a wonderful idea for the t-shirts at the walk. Since Mattie loves Dunkin Donuts, why not use this company's colors on the t-shirt. I was thinking of featuring a lovely vanilla frosted donut on the front as a picture frame around Mattie's cute face. You can see I spend a lot of time thinking about donuts these days! Thank you Emily for this idea!

I end this blog tonight with some glorious pictures. Ann sent these to me today! The pictures illustrate SSSAS first graders working hard in preparation for Mattie's carwash on saturday. Thank you first graders for these delightful pictures and for making the time in your day to support Mattie. What a special gift you gave us tonight!



SSSAS first graders (and Ms. Williams - Mattie's Kindergarten teacher) hard at work!















Wednesday, September 17, 2008

Wednesday, September 17, 2008

The emesis for Mattie started at 9:15am today. However, the intensity picked up at around noon, and then from noon until 2pm, he was vomiting every 15 minutes. This may not sound like a lot, but seeing a six year old vomiting for two hours straight was hard to handle. In the midst of the vomiting, he was also getting very upset, agitated, and angry. Even under the best of circumstances as a parent it is hard to remain composed when your children take their anger out on you. As a parent, I am very aware that Mattie is very ill. But how do you channel his anger, and how as a parent are you expected to handle all of this on a continual basis? These bouts of difficulty and anger were a frequent occurrence today. But another culprit in these mood swings is ativan. It is an anti-emetic, but for Mattie it also seems to hype him up and get him agitated. At times today I wanted to scream, but then I catch my breath and realize it isn't fair to scream at someone who isn't always in control over his actions and behaviors.

This afternoon at 2pm, we tried a new anti-emetic with Mattie. I thank those of you who told me about Kytril. Kytril seems to work very well along with Ativan. But the verdict is still out as to whether Kytril really made the difference. I will know better tonight and into tomorrow. However, after Erin (Mattie's wonderful nurse) administered the Kytril, my mom, Lorraine, and I took Mattie for a walk in the hallway. That turned out to be a major fiasco. Mattie tried to walk but was unable to (ativan made him very unsteady on his feet), so we then moved him to a wheelchair. Mattie got super frustrated because he couldn't push the chair himself. He did not have the strength, or basically I think he couldn't be in control of yet another aspect of his life and got frustrated. So literally Mattie had several meltdowns in the hallway and refused to move at all. We tried reasoning with him and so forth. It wasn't a pretty picture. It was like dealing with a two year old tantrum! Finally I reasoned with him and got him to sit in the wheelchair with me and we moved through the hallway together. Needless to say, I was worn out from this drop down drag out! Later on in the evening, I had a senior nurse approach me. Her name is Carol. Carol came up to me and my friend Lorraine. Carol acknowledged that we did not know each other, but she told me that she observed me working with Mattie in the hallway when he was having a tantrum. She said in her 35 years of nursing, she has never seen a parent handle such a difficult situation so well. I must admit I was stunned. Because I did not think I handled it too well, I just feel tired and frankly not using my best skills possible. Actually the heck with the skills, all skills go out the window in times like these. In any case, Carol's kind words meant a lot to me today. It is amazing how a loved one can give us the same feedback, but when you hear it from a stranger, you pay more attention to it. Why is that?! Thank you Lorraine for visiting. For your company and support. We love the bagels and the craft activities for Mattie.

I had a nice visit today from Alison as well. Alison brought me lunch and a lovely comfy outfit to wear. She also gave Mattie a special light up ghost. I personally love "ghosty." He is adorable. We will use him tonight. I always appreciate Alison's sensitive and introspective manner. It is very special when you meet and make a new friend, and you and this person just click. Actually Mattie has brought me the gift of many wonderful friendships! Alison got me out of the hospital today and we sat on a bench by the rose garden at the hospital. It was wonderful to actually be a part of the world for an hour and take in fresh air.

I received an e-mail today from a close friend of mine, Karen, who lives in NYC. Karen and I have known each other since 6th grade. We have always been close and she writes to me each day! Today something she wrote in an e-mail to me caught my attention. She said, "I know you are dealing with one of the worst things you could be dealing with in life. The amazing thing is that you are also dealing with the best life can offer you. Stay with me here... You get to see the good in many people." Karen is absolutely right, this is frankly the only positive part of Mattie's illness. I am seeing people in a whole new light, and I am seeing how generous, kind, compassionate, and selfless all of you are. I am not sure why this surprises me, maybe because as a mental health provider most of the time people are coming to see me because of failed relationships and disappointments experienced in life. Even though Karen lives in NYC, she has forwarded the carwash fundraiser flyer to all her friends in the DC area. I thank the Kahn family for responding and getting the word out at local schools. People who I do not even know are coming together to help Mattie, it leaves me speechless.

Mattie also received a special e-mail today from Coach Dave (SSSAS head football coach). Dave wrote, "I am truly blessed that I have gotten to know you. You keep fighting today to get rid of those bone bugs and I will keep thinking about you and how amazing you are. I have been a teacher for 18 years and you always seem to teach me something new every day. Thank you for doing that. You can add that to the growing number of talents that you have (of course my favorite is your ability to make me smile)." I hate to admit this, I have never been a football fan, but after meeting Dave and reading his e-mails, I am thoroughly a Saints football fan. I am just so impressed with the depth of this football coach. He understands Mattie's situation on so many levels and can relate to Peter and I as a concerned parent.

On the electronic front, thank you Kim, Emily, Susan, Charlie (love the sand castles) and Margaret for the wonderful e-cards and Eva and Barbsie for the nice e-mails. Before I end for the evening, thank you Rana for the wonderful dinner. We so appreciate you thinking of us each wednesday! Also, special thanks to Jenny (one of Mattie's art therapists) for coming up tonight and giving Mattie a train set. This brought a smile to his face today that I hadn't seen the entire day. What can I say, I love to see him smile!

September 16, 2008

Tuesday, September 16, 2008

Tuesday, September 16, 2008

Mattie started his day on a happy note. He wanted to get out of bed and play with me. We did two hours of legos this morning and he was able to eat all his scrambled eggs. This was big news to report! We had a good morning together and we joked about collecting urine. As the morning wore on though, he decided to venture out of his room. He donned on his fleece bathrobe and headed out into the hallway looking for Whitney, one of Linda's interns. Linda is on vacation this week. Happy vacationing Linda, it is well deserved! All the nurses get a big kick out of Mattie because they know when he enters the halls, he is a man on a mission. Mattie's mission was to find Whitney. Thankfully we found her and Lesley (another childlife intern). Whitney and Lesley helped Mattie create a wonderful beach scene on a poster board, and Mattie was able to color all sorts of fish to add to this poster creation. The poster is now up in our room and adds some nice color to the room!

We had a visit today from Tad Ferris. Tad is the father of Kazu, a SSSAS buddy of Mattie's. Tad's family has been personally touched by cancer, so seeing him in the hospital today was a very courageous and selfless act. Tad came and delivered several items to Mattie, such as scooby snacks in a wonderful dog bone shaped metal Scooby Doo tin. Mattie also was happy to receive all the wonderful scooby stickers. The Ferris family also gave us a hand held massager. You know what Peter and I will be fighting over in the hospital. Thank you for thinking of us and your support!

After Tad's visit, Mattie was still searching for something to do, and while we were waiting for his urine analysis results we decided to pay a visit to the clinic and spent some time with his buddy, Jessie (his art therapist). Mattie loves working with clay, and he is designing a whole series out of clay with a central character he named, "big head." Big head is aptly named because he has a HUGE head that seems to get in the middle of everything. Mattie designed his third "big head" clay sculpture today and Jessie and I are getting a kick out of his theme.

I then met up with Dr. Myers in the clinic and he told me that Mattie's creatinine clearance level was 120 today, and it was 52 yesterday. Amazing what hydration can do for a body. So Mattie said his good-byes to Jessie, and headed back upstairs. As we waited for the research pharmacy to make Mattie's chemo, Mattie had a nice visit from Susan DeLaurentis. Susan is Mattie's school counselor at SSSAS. Susan faithly sends Mattie a singing card in the mail each week, and today she delivered an envelope full of cards from one of SSSAS's first grade class. Thank you Ms. Fiske's class for the wonderful "funny face" cards. They are delightful and could bring a smile to anyone's face. Thank you Susan for working on this with the kids and for hand delivering them!

Later this afternoon we had a visit from Liz Chiaramonte, a SSSAS mom who we have become friends with. Liz delivered us a tasty dinner and she spent some time talking with Mattie about his legos. After Liz left, Erin (Mattie's nurse) and I were preparing him for the chemo that was about to begin. It is amazing how we went from happy and playing in one minute to serious and questioning in the next minute. Right in front of Erin, Mattie asked me, "am I going to die?" He realizes on some level how sick he is. The question was asked in such a sensitive, yet serious matter. I basically said to Mattie that we all are going to die, but this wasn't going to happen for a very long time. Again I reiterated that he is receiving chemo to fight the bone bugs so that he could continue to live a long and happy life. On one hand I felt like I answered the question well, but on the other hand I felt like I was being disingenuous. But after all, what would be the purpose of dwelling on dying? He/we have to be optimistic!

Chemo started tonight at 5pm. This is a 48 hour infusion. This point in time, I refer to as the calm before the storm. The negative side effects of this chemo appear to have a delayed reaction. So I am sure tomorrow will be quite a day. In the midst of all of this today, I received two lovely messages by e-mail that I wanted to share with you.

The first message was sent by my friend, Charlie. She sent me the "story of the geese" below. I have always used this story when doing lectures on leadership, but when Charlie sent it to me and related it to supporting a child through cancer it caught my eye. Mainly because I never looked at the story in this way, why would I? I guess why would any of us, unless cancer played a part in our lives. But basically the story of the geese has real relevance to fighting cancer and how teamwork is the way to do it. When you get tired, let others help by stepping in until you can "take point" again. This disease takes a flock to defeat. Prayers and love are part of the "uplift."Thank you Charlie!

STORY OF THE GEESE
As each goose flaps its wings, it creates an “uplift” for the bird following. By flying in a “V” formation the whole flock adds 71% more flying range than if each bird flew alone.

LESSON: People who share a common direction and sense of community can get where they are going quicker and easier because they are traveling on the thrust of one another.
When a goose falls out to formation, it suddenly feels the drag and resistance of trying to fly alone and quickly gets into formation to take advantage of the lifting power of the birds immediately in front .

LESSON: If we have as much sense as a goose, we will join in formation with those who are headed where we want to go. When the lead goose gets tired, it rotates back into the formation and another goose flies at the point position.

LESSON: It pays to take turns doing the hard tasks and sharing leadership. People, similar to geese, are interdependent with one another. The geese in formation honk from behind to encourage those in front.

LESSON: We need to make sure our honking from behind is encouraging, not something less helpful. When a goose gets sick or wounded or shot down, two geese drop out of formation and follow their member down to help provide protection. They stay with this member of the flock until he/she is ready to fly again. Then they launch out on their own, with another formation, or to catch up with their flock.

LESSON: If we have as much as sense as the geese, we’ll stand by one another like they do.


The second message came from Paul R. Mullins (Chair, Dept. of Anthropology at Indiana University). I do not know Paul, but we have gotten to know each other through a mutual connection, Rev. Rosemary's (at SSSAS) sister, Bunny. Paul wrote the following to Mattie, "I was reading your blog and see you’re a fan of doughnuts, as I am too: I even wrote a book about doughnuts, so I really have a great job. I run marathons too, so I really like the little story on your blog about marathons and beating cancer and couldn’t have said it better. Dunkin Donuts has a marathon every year, so we both should put that on our list of things we need to do. In the middle of World War One under the worst possible conditions, a team of women from the Salvation Army decided the best food to eat in the middle of the war was a doughnut, and tons of soldiers ate doughnuts before they went into battle. You’re doing your own battle now, so hang in there and eat a few doughnuts along the way. I hope we get the chance to run or maybe just walk a doughnut marathon soon." Thank you Paul for helping us understand our doughnut consumption from a historical connection. I found that fascinating.
On the electronic front, thank you Bunny, Barbsie, Charlie, Paul, and Goli (we loved the slide show) for your e-mail and Kim, Susan, Karen, and Margaret for your e-cards. I thank you for all your thoughts and prayers. We can definitely use them as we start this next round.

September 15, 2008

Monday, September 15, 2008

Monday, September 15, 2008
Mattie woke up this morning at guess what time? You got it, 4am again! But I am now so used to this process, that I naturally get up with him. Mattie had a slow morning and he even helped change his central line dressing. He is such a good assistant! Then we all packed up our things and headed to the hospital. As we walked into the clinic Mattie found Jessie and immediately started working on an art project with clay. You can see him hard at work with his creation below. Thanks Jessie!

At the clinic today I received some news I wasn't expecting.
The news was that Mattie could not start chemo today because he has a low creatinine level in his urine (52, and average is 70). Creatinine is a chemical waste molecule that is generated from muscle metabolism. Creatinine is produced from creatine, a molecule of major importance for energy production in muscles. Approximately 2% of the body's creatine is converted to creatinine every day. Creatinine is transported through the bloodstream to the kidneys. The kidneys filter out most of the creatinine and dispose of it in the urine. The irony is that Mattie's creatinine blood serum level was normal (0.5), so there is a discrepancy between what is in his blood versus what is in his urine. Needless to say, until Mattie's creatinine clearance level (urine level) rises, he is unable to start chemo. Delaying chemo is actually a good thing though because we want to make sure Mattie's kidneys are functioning well and are ready to process the next round of meds. So we sit here in the hospital getting hydrated by IV fluids, and collecting urine for 24 hours, so that we can reassess his levels tomorrow. If the creatinine level bounces back up tomorrow, Mattie could start chemo, if not, we will be released from the hospital for a week for his kidneys to recover. Who would have expected this today? The process is hard enough, but I think it is this unexpected stuff that further complicates matters. Afterall, none of us really likes the unexpected especially when the unexpected occurs on a daily basis.

Later this afternoon, Mattie had a visit from his buddy Charlotte and her mom, Ellen. Charlotte and Ellen brought Mattie his food of choice, Dunkin Donuts. Remember, one donut a day, and everything will be okay! It was so cute to hear Mattie and Charlotte singing that donut song from the famous e-card I posted on the blog yesterday. Mattie and Charlotte sat together and ate vanilla frosted donuts and started creating things with model magic. We then all played a game called "Guess Who." It is a lot of fun, and we are learning to be good sleuths and ask good questions of our opponent. In the midst of playing, Dr. Jeff popped in and checked on Mattie and entertained Mattie and Charlotte. Ellen thank you for the ice cream too! There is something about ice cream that just makes you feel happy!

Mattie played some more board games with Grammie today and then we had another visitor. Elizabeth Murphy (a mom of one of Mattie's soccer buddies) came and delivered us a wonderful dinner and a gift for Mattie. We can't wait to try the hyperslide tomorrow!

On the electronic front, thank you Barbsie and Jay for the e-mail and Karen, Susan, and Lorraine for the e-cards. Mattie continues to touch lives around the world. Mattie received an e-mail today from Laurance O. Alvarado, a Senior Director at Strategy and Business Development Unit, in Dubai (United Arab Emirates). We do not know Laurance, but he was intrigued by Mattie and his blog.

As Peter and I try to go on and a live our lives amidst all of this, I continue to struggle with what I am required to do. Tonight I attended a professional conference call. Though under most circumstances I would have found this call stimulating and of utmost importance, I instead tonight felt like I was screaming internally. Doesn't anyone understand that there are so many more important things in the world, other than what was being discussed? That there are children and their families in great pain each day? Particularly a family member who they were talking to?! This is quite a life lesson on some many levels.

I end tonight with a special thank you to Ann! Ann called me today and was truly happy to hear about Mattie's good weekend. Thank you for always checking in, for your willingness to drop whatever you are doing to help us, and for using your skills to mobilize and motivate others to help Mattie. Goodnight all, and thank you for your support!

September 14, 2008

Sunday, September 14, 2008

Sunday, September 14, 2008
Some things in our lives seem to be consistent now. Such as Mattie not falling asleep until midnight, and then Mattie waking up at 4am to come and find us. I can almost plan my night around the midnight to 4am sleep-wake cycle, which would be rather funny really if we weren't so tired. Because we go to bed so late, and then do not sleep consistency through the night, we wake up much later now in the morning. This morning Mattie had a visit from his SSSAS buddy, Campbell and his mom, Christine. Campbell and Mattie have gotten to know each other quite well this year, and are really good play buddies, as they both like to use their imagination to build and create. Below you will see the boys busy with legos and then creating stuffed animal bridges around Mattie's lionel train tracks. For us, this has been a wonderful weekend of normalcy and it was great to see Mattie so animated with his buddies.

Christine, thank you for all the tasty goodies you brought us. Sugar and chocolates are my drugs of choice during stressful times! Adding to the supply is always appreciated!

I find in the midst of trying to be a mom and learning how to be Florence Nightingale, I sometimes forget that I am also a friend. I guess I don't feel like much of a friend these days, because I am too busy trying to stay afloat. But Christine told me that she missed me at school, and that even though we don't see each other as often as we used to, she thanked me for my friendship. She said I continue to be a big part of her life. Well that is just about the nicest thing a person could say to another person! Thank you!

Before Campbell left today, we had a visit from our resident Jack Russell Terrier, JJ. JJ was bearing gifts from Dunkin Donuts. JJ gave both Campbell and Mattie a vanilla frosted donut. Needless to say, JJ became extra popular and the kids devoured the donuts! Thanks JJ, you have excellent taste!
We offered Mattie the opportunity to go for a walk or to do anything he wanted this afternoon, but he chose to stay home with Peter and do some low key things. I have a feeling Mattie on some level is gearing up for his hospital visit tomorrow. Peter and I are trying to get more efficient with what we bring to the hospital, and we have said good-bye to schlepping bags to actually designing portable shelving units that are labeled by contents. It may sound over the top in organization, but believe me when you have to quickly get yourself in and out of a hospital room, we need to be organized and efficient. We shall see how all this planning works. But I am telling you all of this because Mattie is cognizant that this means tomorrow is a hospital day!

In the midst of packing and laundry, my parents took me out to lunch today. Again, it was very special to just leave the house and eat like a normal adult, without constant interruptions. I will savor my saturday and sunday experience for sure, as we head to spend the week in the hospital. Later this evening, we had a visit from Eva, a consultant who worked with Peter during his BearingPoint days at the American Red Cross. Eva, thank you for a wonderful dinner! Mattie LOVES your applesauce cake! In fact, he started with the cake before he had dinner. Normally this wouldn't be the way things work here, but at this point, anything that Mattie wants to eat is MY new BEST FRIEND! Mattie continues to lose weight, and in my opinion he doesn't have that much reserves to pull from to begin with.

Mattie received a lovely prayer card from Dr. Sylvia Marotta (GW Department Chair of Counseling), and a mass will be said in Mattie's honor at Holy Trinity in Georgetown. Mattie was scheduled to start CCD classes at Holy Trinity this fall, but you can all imagine what happened with that plan. Thank you Sylvia for thinking of Mattie! I also received an e-mail today from my mother-in-law, Barbara. Barbara let me know that her local Baptist Church includes Mattie in their prayers every Sunday. I know how many of you have Mattie on prayer lists around the country, and that you say a prayer for him each day. It is my hope that God is hearing us and will continue to look after Mattie during each stage of this process.
On the electronic front, thank you Barbsie (for the knock knock joke), Gail McLay (Mattie's former assistant head of the lower school at SSSAS, writing us all the way from Australia), Jackie, Zachary, Alex (a brother of one of Mattie's SSSAS classmates, who wants to volunteer at the carwash fundraiser), Susan, Ashlee (one of Vicki's fine students), and Coach Dave (glad the Saints won the game!) for your great e-mails. Thank you Kim, Karen, and Charlotte for your great e-cards. I leave you tonight with an e-card Mattie received. He received this card from both Susan S. and Charlotte, and it has become our mantra! It is SO perfect for Mattie (because of his interest in donuts)! "One donut a day, and everything will be okay." I think Dunkin Donuts should change its slogan! Click below!
www.hallmark.com/ECardWeb/ECV.jsp?a=EG0238162924399M271830588Y&product_id=