Mattie Miracle 2021 Walk was a $125,000 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: 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

May 16, 2009

Saturday, May 16, 2009

Saturday, May 16, 2009

Quotes of the day: "Never give up, for that is just the place and time the tide will turn." ~ Harriet Beecher Stowe

"Sherman made the terrible discovery that men make about their fathers sooner or later... that the man before him was not an aging father but a boy, a boy much like himself, a boy who grew up and had a child of his own and, as best he could, out of a sense of duty and, perhaps love, adopted a role called Being a Father so that his child would have something mythical and infinitely important: a Protector, who would keep a lid on all the chaotic and catastrophic possibilities of life." - Tom Wolfe, The Bonfire of the Vanities

"When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around. But when I got to be twenty-one, I was astonished at how much he had learned in seven years." - Mark Twain, "Old Times on the Mississippi" Atlantic Monthly, 1874

"He didn't tell me how to live; he lived, and let me watch him do it.” - Clarence Budington Kelland

"A man's worth is measured by how he parents his children. What he gives them, what he keeps away from them, the lessons he teaches and the lessons he allows them to learn on their own." - Lisa Rogers

Hi everyone, it is Pete, Mattie's Dad, writing the blog today about Mattie's battle against osteosarcoma. Since I spent Friday night and most of Saturday alone with Mattie, we felt it best that I be the one to write the blog, and give Vicki a break. To our loyal readers, I am sorry you're not getting your daily "Vicki dose," but she'll return shortly.

Mattie had another challenging night. Once I was at the hospital, I was able to release Vicki and she and her parents left around dinner time to head home. I had stopped by Target to refill my goody bag as Mattie has a different play relationship with me versus Vicki, and he expects me to engage him almost immediately with play many times. More on this later in the blog. I wrote on the whiteboard six numbers (1-6) and then asked Mattie to choose a number. He was intrigued, and began his usual interrogation and questioning of me as to why he was to choose a number. I of course played coy and that was his confirmation which meant he was getting a prize, so he got more engaged and excited about the possibilities. This drew him out of his funk and difficulties as he focused on something that really interested him. He selected several numbers and finally settled on "five". I produced a Lego (I know, shocker) and his eyes lit up and instantly wanted to open it and build it, but with me. He made the specific point of not wanting to proceed without me, since I still had to change out of my work clothes into shorts/T-shirt. He said he would wait for me to change and would not proceed without me.

See, for fathers and sons, doing an activity together, where we're working as a team, collaborating, working towards a common goal and focused heavily if not solely on physical activities, is a bonding experience and helps form a special relationship between us. I know a lot of people characterize situations when men are playing, working or performing an activity together as "male bonding", but this is an essential component to forming a strong relationship with other men, especially your child. So, building together, be that Legos, Knex, Duplos, blocks, TinkerToys or even wood working projects, fishing, as well as performing "chores" such as grocery shopping, Home Depot runs, dry cleaning, have always been tasks that Mattie and I have done together and a chance for he and I to "bond". It is different for a father and son versus a mother and son, but I do feel that having a strong relationship with your father is absolutely critical to helping your child be a better adjusted individual in the world. Plus, it gives the father a chance to experience a special kind of relationship like no other.

So we built a Lego, and through the course of the next several hours enjoyed a few more activities together. But around 10pm, I had been tasked with getting Mattie started back on his anti-anxiety medication. With Georgetown not being a pediatric-focused hospital, the Pharmacy here naturally only has this medication in a pill form that you swallow. Find me a seven year-old that swallows large pills. Right. So Vicki had me bring our prescription from home tonight, which is in a fast-dissolving wafer form that melts away in seconds in the mouth. I very simply approached Mattie on the request to take this medication and in a matter of seconds he went from recognizing this as something new, and literally launched a semi-psychotic episode that lasted 25 minutes. During this time, as Vicki has described, he almost cannot be comforted or reached and certainly not rationalized with.

Fortunately, I have been through too many of these episodes and knew that I just had to try and comfort him, make him feel less threatened and wait out the event doing anything I could to sooth him (something I learned from his mother). To be honest, this goes against most instincts that a father has with a son. A father raises a son to be tough, self-reliant and in anticipation of being independent, because he knows from self experience that sons grow up to become fathers, form a separate and distinct family unit from their own families, and are expected to be part of the foundation of the family. A father realizes that he has a responsibility to install these traits in his sons, so as a father you feel this instinctual urge that goes unspoken but is known to all fathers, which is probably much like a mother feels for their child, to protect, nurture and guide your child.

I was able to calm him by rubbing his legs, arms, neck, talking slowly, etc., so that he eventually curled up next to me and laid his head on my chest. I then called Vicki since he had been crying out "mommy, mommy, mommy" throughout most of the episode. I was not going to call Vicki until I had him back and under control. Once we reached that point, I called Vicki, told her, and then let him speak to her for a few minutes. Needless to say, it is such a depressing thing to have to see your child go through this (in addition to everything else), to know that it will get worse before it gets better, and to know that you have done everything you can to help comfort your child and are still seeing him suffer.

I did get Mattie eventually to re-engage on some Lego play, as well as playing with some of the Cars characters that he received, playing smash-up/bang-them-up types of play. At around 12:15am, Mattie asked for his iPod as he wanted to watch some of the Scooby-Doo TV episodes that I had downloaded, so I set him up with these and then attempted to get ready for bed. Mattie watched two episodes but every few minutes he had a request for me to adjust the volume or readjust the earbuds as they kept falling out of his ears.

So, at around 1:15am we shut off all the lights and went to "sleep". I was up at 2:40, 4:45, and 6:10 for urine collection, as well as 4:00am to help Mattie's nurse Katherine draw blood and take vitals, since Mattie was curled up in a mass of blankets. As usual, by 8:00am the PICU was in full swing so there is no resting. So for once, just for giggles, I tracked the activity into/out of our room this morning between 8:00am and 9:00am, which is as follows:

8:01 - Resident enters asking about Mattie's anti-anxiety medication debacle last night. A detailed 4 minute conversation ensues.
8:12 - The nurse enters to say hi and talk about the schedule of meds today. We chat for a few minutes.
8:22 - The Tech comes in with the food try and asks if okay to take vitals. I help her do that
8:34 - Cleaning service knocks and comes walking/talking into the room as if entering a room full of people (mind you the lights are off, curtains drawn, room dark and Mattie is in plain sight sleeping). I shush them quite rudely and back them out of the room physically, bringing the trash cans out with me so as to avoid the very loud rustling of plastic trash bags as they are changed.
8:45 - Nurse enters to administer Kytril and a Phosphorus bolus, complete with the insistent and maddening beeping of multiple pumps, and that effervescent and pungent smell of alcohol wipes, and the foreboding crinkle of sterile plastic wraps being removed from syringes and tubes.
8:56 - Nurse arrives to deliver Lab results from Mattie's blood draws earlier in the morning and we discuss, with me trying to process in a fog, the probability of getting out today.

Between wake-ups every 90 minutes or so, Mattie slept through the morning until around noon time when he was up once again to pee. Mattie then announced he was "up" and wanted to play. Thus began the play saga for the rest of the day. You know how that story goes.

I always say to Mattie, and he answers me when I ask the question, "Only one person in this whole world gets to call me Daddy... and do you know who that is?" Mattie always answers "it's me!" Mattie always remembers this and it's clear in his reaction that this means something to him. Unlike with Vicki, who is physically and emotionally with Mattie most hours of any given day, I do not have the good fortune because I have to work, so naturally my relationship is different with Mattie, but certainly not any less because I am not around as many hours as Vicki. My point is that the impact a father can make on a child, even if he is not playing the primary role can be just a meaningful, and although I am not at the hospital, I have to fight every moment when I am away to keep from going back to them. It's a particular kind fo Hell that no one should ever have to endure.

So to fast forward, Mattie had several anxiety-driven episodes today while in the hospital. Each time Mattie's episodes were driven by either pain or the anticipation of pain. I cannot tell you how awful living through this is. I spent over an hour trying to comfort him, and finally somewhat reached him, but in between I got complaints of wrist-pain that were so bad, I called Vicki for a consult. Fortunately, I was able to work with our nurse to get a dose of morphine that calmed Mattie somewhat, but did not make him compliant with taking any anxiety meds. So, we were at a standstill. After calling Vicki, who then proceeded to come to the hospital, I was able to get another dose of Morphine into Mattie that calmed him down. Vicki arrived just at that time I was working the anti-anxiety meds into him, so we were successful. Within 30 minutes, Mattie was starting to return to us.

I sent Vicki out to go eat lunch with her parents, who had driven her over, and I meanwhile multi-tasked between packing up the room, dealing with Mattie and ensuring the nurse, resident and attending were in support and aligned with our decision to get discharged this evening. So, we got discharged at around 5:30, and packed up and with the grace of a herd of elephants, charged towards the door to come home. Mattie has been doing so much better since he got home. Vicki and Grammie took him out for a long ride in his wagon, and now Vicki and Mattie have settled on the couch watching episodes of the Muppets Show. I will stay with Mattie tonight on the air mattress because he will be on IV hydration tonight and hopefully that will give Vicki one more night of relative rest.

So hopefully tonight's blog was not too much to endure and I thank all of you for the departure from tonight's regular author.

Also, Vicki asked me to include the following:

Charlie wrote, "I think after reading back a way in the blog that this might have been one of the tougher weeks that you've had in a while. Just when you think that things are headed in the right direction it seems there is another detour or obstacle that wasn't foreseen. That's pretty scary and disheartening. While it is scary to know that the chemotherapy is at an end, it has to be a good feeling too. No more potentially damaging medication is being run through Mattie's veins. And he managed to sidestep the possible hearing loss from the chemotherapy; that's a definite plus. I know you are very frustrated with Mattie's behavior and how it makes things including his recovery far more difficult. No one who has been following this situation from early on can argue that you haven't handled him brilliantly; you have! These ups and downs and setbacks in attitude are a part of growing up magnified by the situation and the medication that is wreaking havoc with his mental/emotional state. You are an amazing mom and advocate and I continue to be amazed by what you accomplish on a daily basis."

Lisa, my sister-in-law's friend Lesley wrote us a beautiful note. Lesley wrote, "My best friend and I read the blog for so many reasons which I have already expressed to you. Mattie's meltdown felt so "normal" to me. My girlfriend and I have kids exactly Mattie's age and some of the frustration is so age appropriate. Recently, we both had a week in which we felt our boys were worthy of only food and shelter but not much more. I even said to Lisa, "Is this normal." She laughed and said " of course." I often feel since I just have one child that Max's behaviors are beyond okay, but when I see other kids or talk to other parents I am reassured. I feel like the best gift we could give you is to tell you about our own children's moments that we wish we could erase. Mattie is going through the worst a human being can tolerate, and he is at his wits end. He is seven and part of being seven is the desire to separate and state your opinions and feel really strongly about them. Mattie's desire to protect his body from pain is a great lesson you taught him. Of course he does not see the big picture, because what he is going through is not something a seven year old should ever have to comprehend. You are a champion so continue to go with your gut."

Vicki's dear friend, Lorraine, wrote, "So sorry that yesterday was another horribly difficult day with Mattie. I see that you are home today and that Mattie will be home tonight too, but what a time of it you/he's had with the anxieties, traumatic incidents, pain, fear. Sounds like going back on the anxiety drug to help ease the transition and the PT work will be a big help once again. I'm sure you don't relish the idea of Mattie taking another drug, but it sounds as though he does need this and that you have absolutely no choice at this point. This analysis about "self-soothing" is fascinating, but how do they know how much pain Mattie really is in? Also, everyone's ability to handle pain is different, and after 10 months of chemo and all the surgeries what do they expect from a 7 year old, let alone an adult? Wouldn't anyone's resistance to pain be so reduced by all the chemo by now? The pain seems really to be scaring Mattie -- and if being in pain is preventing progress with PT then it makes sense to offer Mattie some way to ease the fears and hopefully lessen the pain. I wonder what behaviors constitute self-soothing at age 7? Watching TV quietly on one's own? Gripping a favorite toy? Certainly can't suck the thumb, or like an adult have a glass of wine? I mean where does one go with this type of analysis? And I really hope you don't take this too much to heart either because I really believe that we cannot be responsible for every personality trait in our children. Some must be genetic, some circumstances out of our control, other people's behaviors and interactions, and life experiences. But I also believe that parenting styles are adapted to fit the needs of our kids and that you responded to Mattie's needs the very best way you could, and with all your heart and love. Wishing you all the best as this transitioning weekend unfolds. The 10 months of chemo has ended! It may be an anti-climax, and a big cloud certainly hangs very heavy because Mattie is still not done, abut Mattie has made it through an incredible amount of hospitalizations, medications,and so much more, that this is an amazing accomplishment. I do hope your wish is granted for finding several fabulous people to help out with Mattie over the summer."

Vicki's friend and colleague, Denise wrote, "I read the blog this morning and I would just like to invite you to think about Mattie's ability to self-soothe as being overwhelmed at this point. He does not know what to expect from his internal experience (i.e., I feel OK today and wretched and in pain another day) so it makes complete sense based on his experience that he would look to external sources (his parents) for grounding and comforting. And he will rediscover and reconnect, as well as learn new ways of self-soothing as time goes on. I can only dimly imagine how scary it must be for him when he is in pain and he becomes frightened and does not know when it will end. I pray for strength for Mattie, you, Peter and all your family members, friends, and all the professionals who support you all in this journey."

A SSSAS upper school mom and our friend Tamra wrote, "While it is true that the waters of your journey are uncharted and choppy at times..smooth at times...and even there must be a feeling of losing compass at times..However, it really is much ado about who is at the wheel...and you two have steered mightily to insure safe harbor for your magnificent son and the two of you. Keep on looking to the stars in the night sky for direction and look into the eyes of each other to reaffirm what wonderful, loving, bright people that the two of you are.... "Hope, that star of life's tremulous ocean." ~ Paul Moon James

May 15, 2009

Friday, May 15, 2009

Friday, May 15, 2009

Quote of the day: "A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." ~ Agatha Christie

Mattie had trouble falling asleep on Thursday night. In fact, he was up until 2am. We were playing with the plastic food, cash register, and plastic shopping cart that Linda gave Mattie. But I wasn't alone. Mattie's wonderful nurse, Erin, joined in the fun. She helped me buy groceries, and with the prices Mattie were charging, Erin and I had to do most of our shopping with a credit card. For example, one bottle of ketchup was $57. After the day I had on Thursday, Erin was a sight for sore eyes. Erin helped me play with Mattie, and since I was up on the HOUR collecting urine, Erin helped me with that too. Several times she was in the room with me and helped through the entire process. I am not sure if I just looked particularly awful and wiped out, but the help was so greatly appreciated.

Mattie was in a lot of pain last night as well. He complained that his knees and ankles hurt, on both the left and right legs. So Mattie needed morphine Thursday night and this morning. Today was another tough day. Linda and Meg were both not around to help me. However, I would like to note that Linda and I have been trading e-mails since Thursday's physical therapy incident. I consider myself fortunate to have someone as dedicated, caring, and such a strong advocate for Mattie in my life. I was so frustrated with Mattie's behavior on Thursday, that I was losing perspective. Fortunately, Linda understands where I was coming from, and how challenging a week this has been for us.

I have now accepted that there are some things that Mattie will not be given a choice about. I have finally come to this conclusion. The first thing is that Mattie will wear his knee brace, and won't get an option, it is just one of the things he will have to learn to accept. The second thing is that Mattie will need to take oral supplements such as calcium, so we can start migrating away from IV fluids at home. But this will take a lot of work on our part. Because Mattie is extremely strong willed. When he decides he won't do something, he means it!

Ann was scheduled to spend time with us today, but unfortunately because her son was home from school and needed her help, she was unable to come to the hospital. However, she and Alison were obvious in close communication, and Alison came to Georgetown instead. Alison had a difficult commute since it is graduation time in DC, and the roads were very congested. When Alison arrived, Mattie began to play with her. They worked on a puzzle together, and while they were doing this, I had the opportunity to talk with Dr. Synder, Mattie's oncologist. Dr. Synder heard about Mattie's episode during therapy yesterday. She wanted to talk with me about that as well as issues to consider now that we will be post-chemotherapy on Saturday. Dr. Synder attended psychosocial rounds today, in which clearly Mattie was discussed. I think folks came to the conclusion that Mattie has an inability to self soothe, or comfort himself. Instead, he looks to his external world for support and to play with him. I couldn't argue with Dr. Synder, because that is a valid observation. Mattie is very needy and demanding. I reflected upon this observation and comment the whole day. I think it is accurate, but I also think it is inevitable considering the circumstances. In fact, I wonder how well an adult would do in Mattie's situation? Would we be able to self soothe ourselves? Part of me says NO, we would probably ask to be drugged/sedated to a point where we slept through most of the horrible days. I am good at blaming myself for so many things, and this was yet another thing I took ownership for today. But as the day went on, I slowly came to peace with this comment, because I did what had to be done in my opinion to support Mattie. Ann made me chuckle tonight when I told her about Mattie's inability to self soothe. She is right, in the grand scheme of things if this is the only thing we have to contend with, then that is a good thing!

I then joined Alison and Mattie as they were assembling the puzzle. However, pretty soon there after, Anna, Mattie's physical therapist, came by to visit Mattie and have a session. As soon as Anna walked in the door, Mattie started crying and worked himself up into a state. Mind you Anna was just there and talking. She hadn't even touched Mattie yet. Needless to say, I had a VERY difficult time calming down Mattie. He just kept crying, "Mommy, Mommy, Mommy!" Even though I was sitting right next to him, it was almost like he couldn't feel me or acknowledge my presence, he was that upset. I told Anna to get Dr. Synder back in the room, so she could observe this. Dr. Synder tried to rationalize with Mattie, but that wasn't about to happen. So everyone left the room (except for Alison, I think), and I tried my best to stay calm, and quiet down Mattie. However, as soon as the door to his room opened back up, Mattie began to cry again. However, this time, Anna brought in Dr. Biel with her. Dr. Biel is Mattie's psychiatrist. We haven't had to work with him for several months now, because Mattie's issues had stabilized. But several fears and anxieties are surfacing again. Dr. Biel started to ask Mattie some questions, but he did it in a very clever and non threatening way. Mattie was non-verbal throughout the visit, so Dr. Biel would ask the questions, and Mattie's left foot would do the answering. Mattie's foot shook back and forth to indicate, yes and no, and his foot was even skilled enough to show pain, fear, and happiness. It turns out that Mattie is very frightened of feeling pain, which is why he doesn't want to do physical therapy. This is something that we will be working with Dr. Biel on, as well as beginning to prepare Mattie for his next surgery. However, Mattie will begin taking anti-anxiety medication again, in order to help stabilize how he is feeling. None the less, each time one of these episodes occurs, it takes its toll out on all of us.

Once all this commotion died down, Mattie wanted to show Alison some Muppet clips on You Tube. It made them laugh together, and I had an opportunity to eat the lovely lunch that Alison brought me. Thank you Alison for the visit, for staying through all the crying and chaos, and for staying calm and collected with Mattie.

Later this afternoon, Jenny came by to visit Mattie. Jenny knew all about Mattie's day on Thursday from reading the blog. I truly appreciate how Mattie's support system stays connected to our situation, because I think it can only help them understand what we are going through fully. Mattie showed Jenny these Muppet clips and while we were watching, Anna came back to work with Mattie. This time, I encouraged Mattie to let Anna watch the Muppets with him. Mattie eagerly showed the video clip to Anna, and treated her as if nothing had transpired between them. I was happy to see this, and Anna did a good job at moving past what happened and re-engaged Mattie. Anna told Mattie that she wouldn't see him for almost two weeks because she was getting married. She asked him who he thought she would miss. He said, "Mattie!" He was happy to hear her agree. In fact, I just recently learned that Linda has gotten married to Mattie's left leg, George, and Anna has married Mattie's right leg, Steve. That was news to me. There is a lot of marriage talk in the air at the hospital, so I guess Mattie wanted to be a part of all of this.

I had the wonderful opportunity to see Denise and her family today. Denise is a fellow GW graduate, and is a professional colleague of mine. Denise made us a wonderful dinner tonight. We all loved the shrimp and pasta, and we need to track down this recipe. Denise and Alison spoiled me today with fabulous fruit, and I want to thank Denise for the pastries, and Mattie wants to thank you for the cute beanie cat! Lynx and his new cat, Static (named after static cling, which Mattie feels this cat has), love Denise's beanie cat addition! I had the opportunity to chat with Denise's daughter who may be interested in working some hours for me during the summer to help me with Mattie. I have a long summer ahead, and if you know of other young individuals who you think would be a good match for this kind of work, please do not hesitate to e-mail me and let me know. I figure the best way to find the right match for Mattie is starting with our amazing network of supporters for ideas.

My parents came over later in the afternoon, and chatted with Mattie. Mattie shared his You Tube videos with them. When Peter arrived, I packed up to head home. I have been at the hospital for four straight days and nights, and tonight, Peter and I traded. Unfortunately, Peter called me at 10:30pm, to let me know that Mattie had another anxiety episode, and was screaming out for me. So I spoke with Mattie on the phone, and I assured him he will be coming home tomorrow night.

When I got home, one would think I would be headed to relax. But my complex had other things in store for me. They came into our unit this week and replaced our kitchen counter tops and closets. That is good in theory, but I can assure you everything was a mess. I had to reorganize shelves, throw everything in the dishwasher, vacuum, and so forth. Needless to say, this did not put me in a good mood. To add insult to injury, they are still working on our balcony, and in so doing they inadvertently moved our TV satellite dish. So at the moment we aren't getting any TV. You really just have to sit back and laugh about all of this!

Since tonight is our last night of chemotherapy, Erin (a fabulous HEM/ONC nurse) brought Mattie mini vanilla cupcakes and Pirate Booty type chips. I thought that was SO thoughtful of Erin to celebrate the occasion with us. I wasn't actually expecting confetti to fall out of the PICU ceiling for Mattie, but some how this day feels totally anti-climatic. Maybe it is because we have a major surgery looming over our heads.

I would like to end tonight's posting with two messages I received. The first one is from my friend, Charlie. Charlie wrote, "What a horrible day Thursday was. Even if you did not read the blog you could tell just by the fact that there was not one picture, that something was going on yesterday. How awful for you to first, have a really difficult night, followed by a situation where Mattie's pain was not easily alleviated; no mother can stand by and watch her child in pain and not feel it herself. Then later on to have Mattie come completely unglued; I understand how difficult it is when you are not at home and you try to deal with behavior that you would not normally tolerate. How much pressure do you put on Mattie to conform? At what point do you draw the line and are you infringing on other people if you do so? This is definitely not a situation for the faint of heart or those who lack stamina. I know you feel that you will have to "unteach" some of these behaviors once Mattie's situation stabilizes, however, sometimes expediency is required for the safety and well being of both your child and others. Hang in there and I hope today is a better day."

The second message is from my colleague and friend, Denise. Denise wrote, "I read your blog this morning and my most fervent wish is that there was some way that I could hold your pain for you for a brief time, so that you could have that experience of relief just for a moment. As a mother, I am in awe of your strength. Please be compassionate with yourself. You are doing a brilliant job. When Mattie was "doing pain and frustration" you instinctively knew that he needed grounding and support and you gave it to him by sitting in the wheel chair and letting him sit on your lap. He needed to feel that sense of containment and safety and you recognized that and gave it to him. I hope that you were able to get a bit from Linda and your mom for yourself. Just like all the meds Mattie takes to battle his cancer, pain meds have side effects. HE ABSOLUTELY NEEDS THEM and that being said, they do affect his mood and thinking, as well as his body, in the moment. I can't imagine how difficult that is to deal with for you, Peter and Mattie~especially in your exhausted, fearful states. Vicki, I am not near as eloquent with words as some of the other people who write to you and I want you to know this is from my heart. Be kind and gentle with yourself, you are doing a phenomenal job. You are an inspiration to all of us and you are the world to Mattie (and I recognize that can be a burden at times and a joy always). I send you a hug, just for you. On another note, I don't think that there is one mother out there who hasn't used external motivation at some time to get a result. It is normal and we all recognize it is not the preferred mode. We do what we need to do in the moment. I let my 9 month old son eat McDonald's french fries in the car when I was driving to NY on NJTP with him to see my grandmother. He hated being in the car seat and it was the only thing that kept him quiet and both of us "grounded" (i.e., I didn't jump out or throw him out of the car). He is 22 and no worse for that experience and does not eat McDonald's as an adult. Imagine that circle of love and support all around you and imagine leaning into it for the love and acceptance that will support you as you continue to support Mattie."

May 14, 2009

Thursday, May 14, 2009

Thursday, May 14, 2009

Quote of the day: "The person who says it cannot be done should not interrupt the person doing it." ~ Chinese proverb

Mattie had a difficult Wednesday night. He had a hard time falling asleep, and he finally went to bed after 1am. He was up multiple times during the night such as 2am, 4am, 5am, and then at 6am he started screaming in pain. His right ankle (the one with the fracture) was bothering him. I called his nurse in, and she gave him some Morphine. But it was like she pushed water into his central line instead of Morphine. He continued on screaming and I called her back in for help. She then pushed a second syringe of Morphine. Thank goodness that finally worked. As he was waiting for the Morphine, he was writhing in pain. I encouraged him to calm down, that the medicine was coming, but I realize it is hard to calm down when you are in pain. He was getting me very worked up and I told him we both needed to sleep, and that if I did not get sleep, I was going to be very sick. I asked him if he wanted me to get very sick, because there are times he is so self focused I get the feeling he could care less. But he stopped and said that he definitely did not want me to get sick. In fact, later this morning when he woke up to go to the bathroom, he said he had something for me. I asked him what it was, and the next thing I knew he leaned over and gave me a kiss and told me he loved me. When some of you asked me this weekend at the Walk what keeps me motivated to do what I do, the answer is simple. Mattie, because Mattie is worth it, and deserves a better life.

Mattie could not get up this morning. In fact, Meg came over to play with Mattie. We have been so lucky to have Meg in our lives, and it is just unfortunate for us that she is leaving to go back home very soon. Though Meg was here to play with Mattie, Mattie did not wake up until 2pm. When Mattie woke up, he went into the playroom, and had fun selling plastic food to Meg, and used a cash register and play money that Linda gave him to make the buying and selling of food more official.

While Mattie was with Meg, I went on campus to have lunch with my parents. I also had the opportunity to sit outside in the rose garden for a little bit with my mom. However, that is where the fun and pleasantries for the day ended!

My mom and I met Mattie in the physical therapy gym of the hospital. Mattie had a session with Anna today at 4pm. In the session, Mattie had his ultraflex knee brace sized for him. Mattie tolerated this for a little while, while Linda and I were playing with him. Mattie landed up using his arms to throw balls into a parachute that Linda and I were holding. Mattie seemed to enjoy this distraction, which happened to be good exercise for him since it got him lift and stretch his arms. But adjusting the brace wasn't easy to do, and Mattie started to get frustrated with the process. Also he did not care for the stretching pain that the brace caused to his knee. I wish that was the only problem we contended with today! Anna told Mattie that she wanted to work on stretching his leg and getting his brace back. Mattie refused to this request. So Linda tried to cut a deal with Mattie. He could do one activity he wanted to do in the gym and then he would need to comply with what Anna wanted to accomplish. If he cooperated, Linda promised Mattie another wonderful cat to keep Lynx company. This seemed to catch Mattie's attention.

Mattie did some movements on a ramp he enjoys working with in the gym, and after that was over, we told Mattie it was time for stretching. It was at that point that he got very upset. He cried, and cried, and basically shut down. There was no rationalizing with him. He started screaming at me, and insisted on getting the cat that Linda promised him. I told him he had to earn the cat, but that fell on deaf ears. In his mind the cat was promised to him, and it was a lost cause to explain that he couldn't get the cat because he did not put the brace on or stretch. Mattie was simply hysterical and demanded that he get the cat and that I had to take him to the hospital gift shop so he could get it. He said he was going to scream, scream, and scream, and even vomit until he got what he wanted. He kept saying to me, "say yes, say yes!" I tried to encourage him to calm down, but it was impossible. It was like experiencing a full blown three year old tantrum, except he is seven, and has a lot more physical strength. In so many ways, Mattie's behavior has regressed back to his toddler years as he adjusts to the major traumas in his life. By the time this was over, I felt bad about many things. First, I felt bad that I caved into Mattie's irrational demand for this stuffed animal. Second, I felt worn out because his behavior was so over the top, and it is very frustrating that I couldn't rationalize with him, and third, Mattie can take a lot of his issues out on me, which isn't the best of feelings. However, I have come to a simple conclusion. Mattie must buy into the therapy process. We can't do it for him. I am not comfortable with bribing him or motivating him to do exercises for toys or other items. Because the down fall of this is when is enough enough? The prize or item just needs to get better and better in order to motivate him. I have never been a person who liked the token economy system. I would prefer to find a way to internally motivate Mattie. I have no doubt it will take longer, but in the end, this will be a great life lesson. Therapy isn't fun, it will be painful, and in order to actually undertake this process, Mattie will need to buy into what he is doing. I think if he bought into the process, he would then more likely participate in physical therapy regardless of his location.

Turning this tirade, Mattie had to go to the bathroom. Anna carried Mattie's urine sample up to the PICU for me, and in the mean time, Linda, my mom, and I were still in the gym trying to convince Mattie to pull himself together and leave the room. Because I wasn't home, I felt the need to cave into Mattie's demand in order to get him into his wheelchair and back to the PICU. However, he was so hysterical, he wanted me to sit in the wheelchair, and he sat on my lap. Linda pushed both of us in the chair, and my mom pushed the IV pole. What a sight we must have been, with Mattie crying, and his eyes blood shot. When I experience one of these emotional meltdowns with Mattie, it depresses me. Why? Because it further illustrates to me how difficult Mattie's recovery process is. He is strong willed, and though that is an asset when dealing with a rare cancer, it is also a curse. Because he can be non-compliant, hostile, and difficult, which on top of everything else, is wearing and tiring.

Before Linda left the hospital today, she presented me with a collage she made for me with some wonderful pictures of all of us and the nurses and support staff. In addition, the nurses wrote some beautiful good-byes to us along the frame of the collage. Friday is our last official day of receiving chemo. A strange feeling indeed. I have become very used to this schedule of receiving these toxic chemicals in order to keep Mattie's disease in check.

I was not in a happy place tonight and Ann called me to chat. I really appreciated her ability to hone in on what was really upsetting me about today's situation. Thank you Ann for always listening and getting it!

We want to thank the McSlarrow family for an incredible dinner tonight. After the kind of afternoon I had, eating wonderful food perked me up. Your tiramisu inspired me to even have the energy to write this blog. At 9:30pm, Mattie started receiving his fourth infusion of Ifosfamide and Etoposide and the infusion will be complete at 2:30am. Friday, will be his fifth and final infusion of these chemicals, and Saturday, Mattie will spend the day receiving hydration. It is our hope to leave the hospital on Saturday evening.

Peter came over after a long day at work, and sat and played with Mattie, building Legos and playing with some of the Cars character vehicles. Peter did his best to entertain Mattie so that I could eat, and sit and write the blog. Peter didn't leave for home until after 11:30pm, which I know makes for another long night for a member of the Brown Family. Peter gets up at 5am to start dealing with other offices around the world that his company operates. Needless to say, both Peter and I are feeling massive fatigue.

I end today's posting with a message from my friend, Charlie. Charlie wrote, "Anyone who is a regular reader of the blog should understand how difficult it will be to replace all those wonderful people who are supporting you at the hospital every time Mattie goes in for chemotherapy or a procedure. Yesterday's blog seemed like the cast of a major movie production with all those people coming and going and helping Mattie (as well as occupying his time). I can well understand why you are concerned about how to find others who will be as much a part of his life as this special group of people. On top of this is the approach of the date for the lung surgery; what awful decisions you have to make for Mattie. My heart sank when I read the report with eight tumors (which turned out to be a typo) but I can just imagine how awful it was for you to read that; how horrified and frantic you must have been. I am sorry you had to read that and think even for a second that the situation was worse than it already is. All I can say is, if there is a person who can bring together the right people in a situation like this, it is you."

May 13, 2009

Wednesday, May 13, 2009

Wednesday, May 13, 2009

Quote of the day: "Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith." ~ Henry Ward Beecher

Mattie and I had a busy night together on Tuesday. We literally played a pretend grocery store game until 12:30am. Linda gave Mattie a fun set of plastic foods to play with, and we have been having a good time buying and selling foods. I play the customer and he is the grocery store manager. As the night was wearing on, I was developing a massive migraine. I am used to that constant headache pain, but I was also sick to my stomach, and trying to play through this feeling was overwhelming. I never knew a hospital cot could look so good, but I was thrilled for the opportunity to put my head down and have no demands placed upon me. Well other than every two hour urine captures!

Mattie woke up in a good mood today, and was very receptive when Anna and Joe (the orthotist) came to visit. Joe ordered an ultraflex knee brace for Mattie, and when he took it out of the box, I was stunned. This brace was huge, bulky, clunky, and heavy. So I asked to talk with Joe and Anna in the hallway, because if Mattie sensed my hesitation with the brace, it would be downhill from there. While we were talking, Mattie was assembling a puzzle my parents brought him. He was working on the puzzle with Katie and Jenn (his wonderful HEM/ONC nurses) and Linda. In the hallway, Joe discussed the process of how he was going to fit the brace to Mattie's leg. We discussed how Mattie would use the brace initially, for about 1-2 hours a day, until he is comfortable enough to wear it longer, and especially at night while he sleeps. Anna is getting married and will be on leave from the hospital until May 27. So we are developing a treatment plan in the mean time while she is gone to celebrate this special occasion.

When Joe came back into the room, Mattie was actually fascinated by the Ultraflex knee brace. Mattie watched how Joe was adjusting the straps of the brace, as well as using a screwdriver to lock the position of the knee joint of the brace into place. Mattie held still and cooperated. However, the brace was too big for Mattie, and Joe headed back to his office today to make some adjustments to the metal frame. After Joe left, Mattie's physical therapy session occurred. Mattie started by kicking bubbles in the air by the side of his bed.

Left: Mattie sitting on the bed, Linda blowing bubbles, and Anna and Jenn watching the bubbles floating by!

Right: Mattie headed outside to do physical therapy in the fresh air!

Left: Anna and Mattie exercising with bubbles.

While Mattie was busy with Anna and Linda, I sat outside and had lunch with Ellen (Charlotte's mom). Ellen brought me one of my favorite salads and a fabulous carrot cake. But most importantly I appreciate Ellen's friendship. Ellen told me some funny stories, and for a moment I forgot my problems. The beauty of humor! Thanks Ellen for your continued support!

After I had lunch, I met with Dr. Synder. She shared with me the written consultation report that was sent back from the Mayo clinic regarding Mattie's lungs. Dr. Moir is recommending that Mattie have simultaneous bilateral thorocotomies. In the letter he states that Mattie has FOUR tumors on the right side of the lungs and FOUR on the left side. In addition, he claims to see more on the left side. I was stunned by this news, since our reports indicate a total of four lesions, NOT eight. Dr. Synder did follow up with the doctor at Mayo, and since then Dr. Moir states that he made a typographical error. Needless to say, this confusion was unsettling. However, Dr. Moir confirmed my doubts. If you recall, a sternotomy is performed if there are no nodules present in the, hylem, the posterior portion of the lungs. According to the scans, Mattie does not have lesions in this area, however, that is not to say that there aren't lesions developing there that are too small to be detected by scanning. If the surgeon performs a sternotomy and during the procedure physically feels nodules in the hylem area of the lung, he would be unable to do anything to remove them. The only way to remove lesions in this posterior portion of the lung is through thorocotomies. I have been mulling this around for weeks, and I do not feel comfortable having a sternotomy performed on Mattie, because if by some remote reason he has posterior lesions, I want them out right away, I don't want to perform a sternotomy and wait for Mattie to heal before performing thorocotomies. Needless to say, I am saddened that Mattie will need such extensive surgeries that will take a long time to recover. When will the difficult decisions to make ever end? Dr. Synder explained to me that she realizes based on the type of parents Peter and I are, that we need to capture as much information as possible, before making an educated decision about Mattie's health care. She said she could simply give us the answer, but she knows we wouldn't be satisfied by this, and she is correct. I think she also feels that Mattie needs thorocotomies. I do not like the decision I came to, but it is the only decision that makes sense, and will give Mattie the best possible opportunity to capture all the lung lesions at one time!

Mattie visited the Lombardi Clinic today and spent some time with Jenny. Jenny worked with Mattie to build a rocket ship! In addition, Mattie also created an alien planet, filled with alien creatures. Of course in any new set up, who is bound to come out and play? That's right, Pinkie, Mattie's art therapy character, who has a taste for risk and adventure. When I got back to Mattie's room, I had the good fortune of listening to Jenny playing multiple pretend characters!

When I did get back to Mattie's room after lunch, it was FILLED with a ton of people. Sally, the story lady, was in the mix, and she brought several students with her to help enact the story and plot. Sally was dressed as a princess and she brought her dragon along with her!

Left and Right: Sally, the dragon, students, and Mattie acting out a story!

This afternoon, Linda and I took Mattie to the radiology department for an x-ray of his left foot. Mattie's other foot (the one without the fracture)
was bothering him today, so much so, that he needed morphine. However, the x-ray only showed swelling and nothing more than that.
Mattie and I played in the childlife playroom later in the day, and met up with Linda's intern, Katie and then my parents. Mattie was visited by his preschool friend, John and his dad, Mark this evening. We want to thank the Putnam's for a wonderful dinner, and Mattie loved the Scooby Doo cupcakes, and I appreciated the special chocolate. Thank you for your continued support!
Peter arrived from work, and helped out with Mattie, and also assembled a large radio flyer wagon that Linda gave to Mattie. Mattie is very excited about this wagon and wants to take a ride around the PICU tonight! Of course he can't because he is receiving chemotherapy, but he is currently in his room sitting inside the wagon! We also had a visit from Jerry and Nancy, our favorite music volunteers. Mattie wasn't in the mood for visitors, but I went out into the hallway to talk with them. I guess this is the part about leaving the hospital that troubles me, the isolation that Mattie is good at imposing upon me.
As we approach 9:30pm, Mattie is headed to receive his third dosages of Ifosfamide and Etoposide for the week. So far, Mattie is holding his own with these drugs. Thankfully!
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Everyone who is involved in Mattie's treatment is so focused on the cancer that they lose sight of the child that needs the care. You see and are trying to plan for it because you are his mother but they cannot see past the disease and think that once he is in a stable place with respect to that, the problems are solved. However the problems are just beginning in some ways. How to keep Mattie productively occupied both physically and mentally when he cannot attend school; how to get him to and from appointments for physical and occupational therapy (and how to find the right people to do the therapy); how to find people to care for him that you trust and that he will trust so that you can work again as an instructor and educator. Huge problems but about as visible as the bottom of an iceberg to those who are used to dealing with what is above the surface (the illness). I don't know anyone better at networking and finding solutions than you are so I know that if the answers and the people are out there you will find them. Remember that you have a caring family and group of friends to go to and start there."

May 12, 2009

Tuesday, May 12, 2009

Tuesday, May 12, 2009

Quote of the day: "A mother's arms are made of tenderness and children sleep soundly in them." ~ Victor Hugo

MTP-PE knocked Mattie out on Monday afternoon, and he landed up sleeping right through his first night of chemotherapy. He of course woke up every two hours to go to the bathroom, but he was simply exhausted and headed right back to sleep each time. I however, was edgy because I wasn't sure if he was going to get sick from the chemotherapy, so I landed up staying up until 1am to see how he was doing. I was up and down all night collecting urine specimens for Mattie, and by 7am, I figured I better wake up and get myself together before the day started with people coming in and out of Mattie's room.

Tricia was Mattie's nurse today. Those of you at the walk, may have met Tricia. She attended the walk and brought her three children! It was lovely to meet her children in person after having the opportunity to see some of her wonderful photos. Tricia brought me hot tea this morning, and as always is looking out for us. While Mattie slept in this morning, I had the opportunity to catch up on some things for the professional association I work for. Where I found the energy to write an article is beyond me, but it is amazing how motivated I am to complete things when I know I have a very limited window of time to get things done.

Many of the nurses and our social support staff have told me that they loved receiving the fresh Hawaiian flower leis, and they are trying to preserve them. That made my day to hear this, because I really wanted to get them something special and unique. While Mattie was sleeping this morning, I was visited by an Eucharistic minister from Holy Trinity Church in Georgetown. She told me that Rev. Jim Greenfield did a guest homily at the church this weekend. You may recall that Rev. Greenfield did the opening prayer at Mattie's walk. In any case, this woman today told me that Rev. Greenfield spoke about Mattie and Mattie's walk in his homily, and said that Mattie's event was the perfect example of a community coming together to help another human being. I was touched to hear about this homily.

When Mattie woke up this morning, he was in a good mood and VERY hungry. He ate for three people. Meg worked with Mattie today for four hours. During that time, he created another wonderful story. This story is about a volcano. I snapped some pictures of the three scenes he illustrated on his own and I will give you a synopsis of the story.

Scene one: There is a peaceful city, with a peaceful volcano. Until one day, the volcano erupts. The lava goes everywhere, and a baby is almost caught by it, until a helicopter arrives to rescue the baby. As you can see the lava is running into the house and over two large gas tanks in the town.

Scene two: The lava is flowing into the city and running underneath a gym, where people are working out. You can see a person on a stationery bicycle. However, the gym floor is getting heated from the lava, and people are trying to escape up the staircase. You can see the person on the top screaming out, "Help!"

Scene three: In this part of the story, the big mama volcano is sprouting out and creating baby volcanoes, which you can see flaming from the house. The mom, on the right hand side, is screaming out, "ahhh!" The baby volcanoes are telling the house, "I am going to destroy you!"

While Meg was with Mattie, I attended a support group meeting in the clinic. It is a very awkward experience attending these groups now, mostly because my experience with Mattie is quite dramatically different from others. I felt today in particular that I depressed the others in the room. But Mattie's situation isn't a pretty picture, and on top of that statement, I am also trying to process the fact that this is our last round of chemotherapy. In addition, I am also very aware of my next immediate problem. Which is where will my daily social support for Mattie be coming from? Right now, Mattie's days can be easily occupied by Linda, Jenny, Jessie, and Anna. But I don't have these ladies at home? How on earth will I manage my days? How will I also manage my days when Mattie convalesces at home post-lung surgery? At the moment I have no answers to these questions. It is funny because one of the social workers thought I was worried about handling Mattie's nursing needs at home. However, that couldn't be further from the truth. I think the HEM/ONC nurses have taught me well, and I no longer am intimidated to deal with Mattie's medical needs, but I know Mattie's level of energy, and I also know my physical limitations. The social worker began to lecture me about the importance of taking care of myself. I listened but then told her that I used to be just like her telling clients the importance of taking care of one's self, but in all reality, it is much harder being in my situation and finding the actual way to do this. It is hard to describe what I am talking about, and I guess it is hard to relate to what I am saying unless you are actually in my position. Needless to say, I did not feel better from this support group experience. While I was attending the group, Meg called me and told me that Mattie needed me, because he wouldn't go to the bathroom unless I helped him. So I left the meeting and ran back up to the PICU to assist Mattie.

Meg continued to play with Mattie today, and I went to sit outside and have lunch. Thank you Liza May for a wonderful homemade lunch. I loved your carrot soup, salad, and cookies! It was wonderful to get fresh air too, and while outside, Ann called me to check in. I know Ann grasps how hard this week is for me on many levels.

When I arrived back at the PICU, I said good-bye to Meg, and Mattie continued to play with Linda and Katie (Linda's new childlife intern). Mattie was conducting a science experiment with water and was throwing all sorts of things in the sink to see what would float and what would make a water basin submerge under water. While in the midst of doing this, Anna, Mattie's physical therapist arrived. Anna and I discussed Mattie's right ankle. Anna wanted to know what she was allowed to do with Mattie and asked if I spoke to Dr. Bob about this. So I immediately picked up the phone and called Bob. Bob called back within minutes, and gave me sound advice. Bob suggested that we not press Mattie to do anything he did not feel comfortable doing. When Mattie is able to put pressure back on his foot, we will know that. Mattie was listening to the entire conversation I was having with Bob. I did not realize he was even doing this, but when I got off the phone, and we asked him to do some things, his response was, "Dr. Bob said I did not have to do this, if I did not feel good doing it." What a character!

Mattie had an active physical therapy session though, he rode around on a scooter, and collected plastic bugs that Linda hid in the hallway. Mattie also worked with clay and other things to get him moving his arms. Mattie will be meeting with the orthotist tomorrow and get fitted for his knee brace. It is my hope that this brace works out well, so that we do not lose ground on Mattie's right leg extension.

Tonight at 9:30pm begins the second night of his Etoposide and Ifosfamide infusion. Again it will run until 2am. So it is another long night ahead of me of jumping up and down to collect urine. We would like to thank the Goff Glennon family for a wonderful dinner. Mattie loved the macaroni and cheese from the Cheesecake Factory. Thank you for your continued support.

I end tonight's posting with two messages I received. The first one is from my friend, Charlie. Charlie wrote, "Leave it to Mattie to do the unexpected. It seems as though every time he has a treatment he finds a new way to react to it. This sort of "surprise" is one I am sure you could well do without. I am sure you felt but concerned and relieved at Mattie's sleeping through most of this but since you were not sure how it would play out, it was virtually impossible for you to get much rest. I was very impressed with the Mattie "mom mobile van." I think Mattie is telling you that you are the most central person in his life, that you carry and support him and that you provide the wheels (energy-emotional and physical) to get him where he needs to be on the road to recovery. I love Mattie's creativeness in saying it all without having to express those feelings in words; his abilities as an artist and designer have really developed this year. You and Peter have brought an awareness of the feelings behind cancer diagnosis, treatment and now moving into post treatment phase. I think the blog should be published and be mandatory reading for those considering going into the area of cancer treatment, especially those who will be dealing directly with the patient and family. So much could be gained by making the family a real part of the treatment team rather than regarding them as an encumbrance to be worked around, ignored and disregarded."

The second message is from a former student of mine, Ariel. Ariel faithfully follows Mattie's blog and recently wrote a term paper about the importance of childlife within a hospital setting to assist children with serious illnesses. Ariel wrote, "I first of all wanted to tell you how amazing the walk was...I am so happy that I was able to take part in such a wonderful event. I unfortunately had to leave early to catch a train to NY for my grandmas 80th birthday, but am so glad that I was able to be there for most of the event! It was great to meet Mattie, and I was amazed at how well he handled all of the attention. I had a few pictures that I thought I'd send along to you. The first 2 are from when Mattie was making you the mother's day crafts. I am so happy to hear that he was excited to give them to you -- he worked very hard on them and we all thought he did a great job! The 3rd picture is of the GW Human Services group that came to the walk. I also wanted to wish you a happy mother's day. I am glad that you ultimately all made it to dinner together. Even though you were hurt by Mattie's words and actions, I am happy that he ended up going and that you all had a nice time. I know situations like this can be difficult, but just remember, "[Mattie] can be mad at you, and [he] can also be snappy, but don't forget [he] always loves you" as you quoted him in your blog a little while back! Please know that you are all in my thoughts and prayers as Mattie's surgery approaches and as you continue to fight this horrific illness. The statistics that you posted on the blog and that Peter spoke about at the walk relating to childhood cancer and the swine flu were shocking to hear and I agree that they are completely unacceptable. I was so shocked and angry by what I learned and have been sharing these statistics with friends and family the past few days. When I told my mom, a pediatric nurse, the reason that Peter was given for not researching new drug treatments, she couldn't believe it. How lucky Mattie is to have you and Peter as his parents to advocate for him and to help raise public awareness about Osteosarcoma."

May 11, 2009

Monday, May 11, 2009

Monday, May 11, 2009

Quote of the day: "The place to improve the world is first in one's own heart and head and hands." ~ Robert M. Pirsig

Before Mattie headed to bed last night, he converted his Scooby Doo mystery machine that his Grandma and Grandad gave him into the "Mama mobile." Mattie requested white paper, tape, and markers, and he occupied himself for a good 30 minutes on this project. When he was done, he was very excited to get my reaction. You can see in the picture on the left, three stick figures. These three represent, Peter, myself, and Mattie. Apparently the bigger figure in the middle is me! The license plate on the van says, "mom." So in honor of Mother's day, I received a van named after me!
Peter stayed with Mattie last night, so that I could get some sleep before taking on days and nights in the hospital this week. Peter helped me get Mattie up and ready for the hospital this morning. Having Peter around in the morning makes things go much smoother.

My parents and I took Mattie to the clinic. Mattie checked in and had his vitals taken. Pretty soon there after Ann came to visit and to play with Mattie. Ann brought her bag of tricks and a McDonald's happy meal. Mattie dissected his cheeseburger piece by piece. Eating the bread first, then the cheese, and then part of the meat! You have to see it to believe it. Ann brought a quicksand kit, and Mattie was in love. He loves making gooey substances and sticking his hands in it. So unlike his mother! Mattie's clinic buddy, Maya, was there today. Some of you may recall that Mattie and Maya did a ceiling tile together in the clinic. They get along well. Today Maya was watching Mattie sticking his hands into this quicksand and playing with toy animals. Maya at first was opposed to the feeling, but then she got used to it and jumped right in, digging through glop to reveal the animals. In fact, Ann even buried pennies in this quicksand, and the kids couldn't wait to dig through to find the "treasure." Ann's occupational therapy skills came out today, and I would say she was very successful with both children. They were having a ball, and using their hands and muscles to pull their way through the quicksand. I took a picture of Mattie and Maya digging for coins.
While Ann was working with Mattie, I had a chance to eat lunch and chat with Jocelyn. Some of you may have met Jocelyn at the walk. She too has Osteosarcoma, but unlike Mattie she is in her 20s. She is treated at Georgetown too, and she came to the walk to support Mattie on Saturday. That meant a great deal to me. In addition to sharing a diagnosis both Mattie and Jocelyn also have the same surgeon, Dr. Bob. It was nice to learn more about Jocelyn, and I find her to be a very inspiring and strong young woman.
Ann stayed with Mattie, as I had to go register Mattie for admission. Ann and I joked about this this paperwork process. I told her I was so unfamiliar with registering, that I may need a map to locate the admissions desk. We both laughed, since this couldn't be further from the truth! Later in the afternoon, I took Mattie up to the PICU. Kathleen and Jenn were his nurses today, and they gave Mattie a big greeting and told him how much they enjoyed his walk! While Mattie was chatting with Kathleen, he grabbed my camera and began to show her pictures of his tent caterpillars which he collected at his walk on Saturday. Mattie loves to put these caterpillars in a jar, feed them, and watch them morph into moths. This is our third year in a row doing this! The first year, I was grossed out by all these caterpillars in my house, but now, I am completely used to it. In fact, Mattie wanted to take the caterpillars into the hospital today, and when I said no, he told me he wasn't going to the hospital. However, we compromised and I took pictures of the caterpillars for him to show to Kathleen instead. You can see a sample picture here!

After Mattie showed Kathleen the caterpillars, he then started snapping pictures of "gross" things around the room, such as the toilet and even a filled urine specimen cup. Got to love him! Mattie then spent some time with Linda and Katie (Linda's new childlife intern) in the playroom. While he was playing, I rearranged Mattie's room, and then spoke with Dr. Toretsky, the attending physician on the floor this week.
Mattie came back into his room around 4pm to start his MTP-PE infusion. Katie came back with him, and they were playing a cute game together, in which Mattie pretended to be calling Katie on the telephone and solicited her for things by phone, such as paper supplies, airplanes, etc. It was funny to listen to. However, after about 20 minutes into his MTP infusion, I noticed Mattie starting to get cold, and then falling asleep. I let Kathleen, Mattie's wonderful HEM/ONC nurse, know what was happening and she watched him closely for the next hour. This has been the FIRST MTP administration where Mattie has had a reaction while it is infusing. However, Mattie did not get rigors (chills) or develop a fever. He just is intensely tired and has been sleeping for hours now! He is also flush in the face.
At 9:30pm, Ellen, Mattie's wonderful night HEM/ONC nurse, started his chemo. He is receiving Etoposide over the course of one hour, and then Ifosfamide for four hours. So his chemo infusion will be complete sometime at 2am. However, this chemo requires a great deal of hydration and flushing, so Mattie will be up consistently every two hours into the early hours of the morning. So in my mind this is going to be a very intense week!
We want to thank the Murphy family for a wonderful rib dinner. It was nice to see you tonight Elizabeth, and my family appreciates your continued support. It is now 10:30pm, and Mattie is still sleeping soundly, only waking up to go to the bathroom. It is eerily silent this evening in the PICU, and I sit here some what on edge by myself, listening for Mattie to make a noise, and watching the IV pole drip this clear colored chemo into Mattie's central line. Of course a part of me can't help but become nostalgic as this is our last week of chemo. I was sharing with Ellen tonight some of my initial thoughts and experiences during Mattie's first week of chemo in August 2008. How on earth has 10 months passed us by? On one hand it seems like yesterday in which we began treatment, and on the other hand it feels as if Peter and I have lived through our own private war that has lasted a lifetime. This war has left us with internal scars, and it is hard to know how one ever comes to peace with this after math. For ten months, the PICU has been my home. Now what? What happens to us when we don't come here each week? It seems like such a big physical and emotional transition! I also worry as Mattie's pending surgery gets closer. I worry how he will handle the surgery? I wonder how he will recover, and I wonder how he will convalesce at home without the support of people like Linda, Jenny, Jessie, and Anna. I have no answers, only questions at this point!

I would like to share a message I received from my friend, Charlie. Charlie wrote, "To all the Mattie Walk volunteers-Thank you for all your hard work! It sounds like Mattie had typical post race let down. If you read about athletes and their training for events, what you find is that there is a big dip the day after the event or the race. Some get sad, others depressed; some feel aimless. I think a version of this may be what has struck Mattie. There is tremendous buildup and no matter what the result, there is this feeling of "is that all there is" that comes into play. Is it pleasant? No. Is it normal? Yes, I believe it is. And it will pass pretty quickly as Mattie is once again involved in the medical routine that is starting back up. I read fear and anxiety in the blog for Sunday as you and Peter come to terms with this last round of chemo and the upcoming surgery for Mattie. Fear of the unknown is very powerful and can be so intense as to be paralyzing. I commend you for knowing and facing this upfront as Mattie will need your clear thinking and decision making on his behalf. I think of all you have gone through and how much more there is to do-the watching and waiting and the long term implications of what has already been accomplished and I grieve with you for the life which should have been and hope you can still celebrate the life ahead."

I end tonight's posting with a poem Charlie sent me entitled, "The Price of Children." I hope you enjoy it as much as I have.

The Price of Children

Here is something absolutely positive for a change. I have repeatedly seen the breakdown of the cost of raising a child, but this is the first time I have seen the rewards listed this way. It's nice.

The government recently calculated the cost of raising a child from birth to 18 and came up with $160,140.00 for a middle-income family. Talk about price shock! That doesn't even touch college tuition.

But, $160,140.00 isn't so bad if you break it down. It translates into:

* $8,896.66 a year,
* $741.38 a month,
* $171.08 a week.
* A mere $24.24 a day!
* Just over a dollar an hour.

Still, you might think the best financial advice is; don't have children if you want to be 'rich.' Actually, it is just the opposite.

What do you get for your $160,140.00?

* Naming rights: first, middle and last!
* Glimpses of God every day.
* Giggles under the covers every night.
* More love than your heart can hold.
* Butterfly kisses and Velcro hugs.
* Endless wonder over rocks, ants, clouds and warm cookies.
* A hand to hold usually covered with jelly or chocolate.
* A partner for blowing bubbles and flying kites.
* Someone to laugh yourself silly with, no matter what the boss said or how your stocks performed that day.

For $160,140.00, you never have to grow up. You get to:
* finger-paint,
* carve pumpkins,
* play hide-and-seek,
* catch lightning bugs,
* never stop believing in Santa Claus.

You have an excuse to:

* keep reading the Adventures of Piglet and Pooh,
* watch Saturday morning cartoons,
* go to Disney movies,
* wish upon the stars.

You get to frame rainbows, hearts, and flowers under refrigerator magnets and collect spray painted noodle wreaths for Christmas, hand prints set in clay for Mother's Day, and cards with backward letters for Father's Day.

For a mere $24.24 a day, there is no greater bang for your buck. You get to be a hero just for:

* retrieving a Frisbee off the garage roof,
* taking the training wheels off a bike,
* removing a splinter,
* filling a wading pool,
* coaxing a wad of gum out of bangs, and
* coaching a baseball team that never wins but always gets treated to ice cream regardless.

And, as the infamous late-night television commercials say: But wait! You also get a front row seat in history to witness the:

* First step,
* First word,
* First bra,
* First date,
* First time behind the wheel.

You get to be immortal. You get another branch added to your family tree, and if you're lucky , a long list of limbs in your obituary called Grandchildren and great grandchildren. You get an education in psychology, nursing, criminal justice, communications, and human sexuality that no college can match.

In the eyes of a child, you rank right up there under God. You have all the power to heal a boo-boo, scare away the monsters under the bed, patch a broken heart, police a slumber party, ground them forever, and love them without limits, so one day they will, like you, love without counting the cost. That's quite a deal for the price!!!!!!!

Love & enjoy your children & grandchildren & great-grandchildren!!!!!!!
It's the best investment you'll ever make!!!!!!!!!

May 10, 2009

Mother's Day!

Sunday, May 10, 2009 -- Happy Mother's Day!

Quote of the day: "A mother is the truest friend we have, when trials, heavy and sudden, fall upon us when adversity takes the place of prosperity when friends who rejoice with us in our sunshine, desert us when troubles thicken around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts." ~ Washington Irving

We are still aglow from yesterday's Walk! These memories will carry us for days to come. I still can't get over the level of community support and spirit! Thank you! Some of you asked me whether I actually said "Ooga booga" at the Walk! Yes indeed I did! Apparently Mattie has started a trend, and many of you who wrote to us today signed off your messages with, Ooga Booga!

Before Mattie went to bed last night, he said he was sad. We tried to figure out why he was sad. It turns out he was sad that his cousins left for the evening because he enjoyed playing with them, but was happier to hear that they were coming over on Sunday to play with him again. Mattie and I both were exhausted and we did not get up until noon today. That was a mother's day gift unto itself. Even if Mattie did wake up early, Karen (my good friend who was visiting from NY) was going to get up with Mattie and play with him so I could sleep! Mattie and I were just too tired to move. When Mattie woke up, he was very excited to give me the Mother's day craft he made at the Walk for me. He colored his own "Mom is #1" bag for me, and inside the bag was a beautiful card cut out for the word MOM that Mattie hand colored. It was a special gift, and Peter brought me a beautiful plant with a balloon. Since Mattie's illness, we have removed all plants from our home. I miss my plants, and seeing this green friend was a wonderful symbol of the end of chemo that is approaching us!

Early this afternoon, Mattie's cousins came over to visit. I took a picture of this foursome together. Mattie had a great time playing with walkie talkies and his race track! I am happy they could have this time to say good-bye to each other. Mattie really craves this normal kid time now!

From left to right: Nat, Will, Mattie, and Sydney!

My dad and I drove Karen to the train station today, as Karen was headed back to NYC since she has to teach on Monday. It was a great visit, she was extremely helpful to Peter and I, and she really connected with Mattie.

Once I got back from the train station, I encouraged Mattie to change his clothes so we could go out to dinner for Mother's day. That is where things started to turn south. Mattie did not want to change or get cleaned up. He started to shut down, and told me he did not care if it was Mother's day. He did not want to go out. I tried reasoning with him, but he insistence and comments only got more hurtful. I removed myself from the situation for a while in hopes he would think about his decision. Peter also spoke with Mattie. He had made this so unpleasant, that I decided I wasn't going to go out. But Peter came upstairs and convinced me to go out with my parents. Needless to say I was in a mood of my own by this point. As I headed down the stairs to leave the house, Ann called. We spoke about Mother's day and the Walk. This distracted me temporarily from my funk. Mattie was watching me while I was talking to Ann, and when I got off the phone, he insisted he did not want to stay home and wanted to go out instead. So to make a long story short, Mattie eventually left the house, but unlike Mattie who can pull out of a mood quickly, I am not as fortunate. It took the whole 30 minute car ride for me to regroup. But we all had a nice dinner together, and my parents, Peter, Mattie, and I played a super round of I Spy at dinner. Mattie ate like a champ and is clearly feeling much better stomach wise.

As we head into Monday, I need to pack up tonight for our hospital admission. Mattie will be in the hospital through Saturday, receiving Ifosfamide and Etoposide. This is his LAST round of chemotherapy! How on earth did this happen? This is a major and frightening transition at the same time. Peter and I still have a central line dressing change ahead of us tonight! Lucky us.

We want to thank the Peterson family for a wonderful dinner tonight. Peter and I will be eating this beautiful roasted chicken tomorrow for lunch, and Karen your pie is always a hit with us! Thank you for this special Mother's day dinner. We hope all our readers had a wonderful Mother's day!

I want to thank Jan Holt, a SSSAS mom, for taking professional pictures at Mattie's walk on Saturday. It is my hope to post these soon for all of you to enjoy. She captured many wonderful moments! In addition, Jan wrote, "Mattie brought good luck to the SSSAS Varsity Baseball Team. SSSAS upset Georgetown Prep that afternoon after Mattie hit fists with the players at the Walk and now have home field advantage for the championship game tomorrow. Go Mattie!"

I end tonight's posting with four messages I received today. The first is from my friend, Charlie.
Charlie wrote, "I was so thrilled that I was there to see the outpouring of support for you and your family. So many people with loving, caring hearts who joined together on a day to celebrate life and hope for a better tomorrow for Mattie and others like him. It was so nice to finally see the people I read about in the blog daily, especially Ann as well as the wonderful people from Georgetown who give so much of themselves on a daily basis. I stand in awe of all they do. The march and the day exceeded my expectations and I know you felt the same way. It was just amazing to be there and connect with all those people who in very separate spheres, do so much for your family on a daily basis. Just so that you know as I circulated through the crowd, I heard people mention Mattie's relayed "ooga-booga means I love you" comment and everyone thought it was cute or endearing or very Mattie."

The second message is from my dear friend, Lorraine. Lorraine wrote, "Five hundred people! Last night, it felt like: wow -- did that really happen? What a huge community of incredible, special, caring people that you and your blog have brought together because of Mattie. I'm sure you spent some time talking with Mattie about his day, and I hope you feel that he too got a lot out of the day from his perspective. As you wrote, so many people now know each other through the blog. Between your families, GW, your friends I have met at Mattie's parties and visiting Mattie, and the blog, I found myself knowing and talking with a lot more people than I would have expected. What an amazing tribute to Mattie and to your huge community of friends and supporters. A miracle in and of itself, Vicki, what you have created. Including seeing almost all of GT's pediatric oncology department there, feeling very special and appreciated."

The third message is from Emily W. Emily is a former babysitter of Mattie, and a student I worked closely with at GW. Emily wrote, "I just read the blog from yesterday and WOW! WHAT A SUCCESS! I want to apologize to you again for not being able to make it down to DC for the walk. I wanted so badly to be there. I hope you know that although I was not there physically, my heart and love is always by Mattie's side. I am so thrilled to see how wonderful the walk turned out to be! Last night Adam threw me a surprise party for my 25th birthday and like I told you a couple weeks ago, I made a wish...a wish for Mattie's health, strength and a cure for Osteosarcoma. I will make this wish again when I blow out the candles for my real birthday this week. But I want you to know that not a day goes by that I do not think about, pray and wish for my Mattie to be healed- I just figured that birthday wishes may have some kind of extra power!! The other reason I wanted to email you was to wish you a HAPPY MOTHER'S DAY! You are such a wonderful mother that a one-day holiday is simply not enough to celebrate the love, support, kindness, and strength you have as a mother. I read the blog every day amazed at how you could possibly be human!?? Mattie is extremely lucky to have such an amazing mother. I have always said that his Mighty Mattie-ness (his ambition, strength, love, and courage) isn't a shock to me because his mother is nothing short of a superhero herself. I want you to know that you have been such a role model for me not only as a leader in the counseling profession/academics, but as a person, wife, daughter, friend, and most of all, a mother. I love you very much and am thinking of you always. I miss you all so much-Please give Mattie lots of hugs and kisses from me and tell him that a wasp tried to sting me the other day but I immediately thought about what Mattie said to me 2 summers ago when he saved me from a big nasty wasp...He said, "Now, Emily...Remember what happened to you last summer...You have to stay calm and be very quiet. You go in the house and I'll fight the wasp!" Mattie saved me from that wasp that day...and he taught me a lesson on how to fight off bees. But Mattie has also taught me so many more invaluable lessons since the day I met him. He has taught me about having fun, being playful...he has taught me to imagine...he has taught me that we have power, strength and courage within us whether we think we do or not. So even if Mattie says, "EW, YUCK!" Please tell him that I send him lots of hugs and even more kisses!"

The last message is from Julia. Julia is a RCC mom and a friend. Julia's daughter, Kate, and Mattie were in the same preschool class together. Julia wrote, "Kate and I were wowed by the # of supporters and all that was pulled together for the event. Kate had a lot of questions about Mattie, the cancer, and why people wear bracelets/t-shirts as we were driving home. So in addition to getting friends and family together in an impressive show of support for Mattie, Vicki, and Pete, the Walk sparked conversations and questions. And who knows where these thoughts and questions will lead - eventually to a cure, right?! We also realized, in talking, that if all the people there walked a mile for Mattie, that we had all marched (I thought it was 300, but 500!) for Mattie and our determination to stomp out osteosarcoma. We thought this was really neat, and we were proud to be a little part of something so important."