Saturday, August 22, 2009

Saturday, August 22, 2009

Quote of the day: "Tears are the silent language of grief." ~ Voltaire

Thank you Charlie for this beautiful poem!

A sad journey
Filled with loss
And painful steps
And more steep slopes
Than one person can
Brave alone.
And so we walk
Arm in arm
And I will support you
Until we reach
The destination
None of us wanted.

Mattie now goes to sleep early and wakes up quite late. Tonight, he was in bed by 8pm, which sounds like a typical bed time for a child, but you need to understand that just about two weeks ago, Mattie was going to bed at 1 or 2am, and waking up at 8am. In addition, just two weeks ago, Mattie was breathing on his own without the use of oxygen, and had a ton of energy to play and do physical therapy. Now just holding is body up is taxing and tiring. There are times during the day, he is talking to you, but he is doing this with his eyes closed. Mattie's pain appears to be managed, but remember he has a 37mcg Fentantyl pain patch on his back and a continuous drip of IV morphine. Despite the pain management, he continues to experience nausea and vomiting, even though he is on plenty of anti-emetics. I am happy to report thought that Mattie is fever free and the Vancomycin seems to be helping.

When Mattie woke up at noon, he was excited to see what the tooth fairy left him. She wrote him a note to let him know she was fresh out of hotwheel jeeps and 18 wheelers, but did leave him two cars, and promised as soon as she could find what he requested, she would be back. Mattie was very happy with this deal, and even more thrilled that she left his tooth behind for him to keep. Mattie has lost about three other teeth prior to this one, but this tooth fascinates him. He has been carrying it around in his tooth fairy box all day!

Mattie played with my parents in the early afternoon, while Peter and I had lunch outside on the deck. Mattie continues to play his Captain Mattie game, and my parents play intensely with him in shifts. They play, take a break, and then come back and play. I think this strategy seems to be working for Mattie, and as Peter and I commented tonight, we are thankful he is playing with them, because we are so BURNED out from playing, advocating, providing medical care, and of course now having to think about Mattie's pending death.

Toward the late afternoon, when Mattie was getting tired, I left the house to visit Ann's parents at their assisted living facility. Ann is currently out of town, and I try my best when she is away to visit her parents, because I know the level of isolation they experience on a day to day basis. I certainly wish I had the time and energy to do more to help Ann's parents, but despite the fact that I do not visit them consistently, I find that Mary and Sully (Ann's parents) are always very appreciative of my visits. In fact, Mary and I had a very moving conversation tonight. She told me she would give up her life, if it meant that Mattie could live. I found Mary's offer very touching because in all reality, she and I have only known each other for a year. Yet, I think time in this case doesn't matter. What matters is this is a mom who has already lost a son to cancer, and wants to prevent another mom from having to experience this same level of heartache. Mary also looked at me and told me that I was a good person, who does many loving acts of kindness. She told me that God sees all of this, and hasn't forgotten about me. I am not sure how she knew this was how I was feeling, but it could be based on her own experiences that she is deducing how I am feeling. Needless to say, I think my visits to Mary and Sully, have taught me one very important lesson. Through suffering and experiencing some of the worst things life has to offer, it bonds you as friends in a very powerful manner. Because I know Mary loves the feeling of getting her nails done, I gave her a manicure tonight, brought her fresh flowers (because to me this brightens up even the darkest of days), and also sat with Mary and Sully in their room while they were having dinner. I desperately needed to get out of the house today, and I am happy in doing so I could bring happiness to someone else's day.

When I arrived home, my parents were playing with Mattie. However, Mattie was wiped out by 7:15pm, and wanted to go upstairs to bed. So we carried him up, which is a feat, since he is connected to two IVs and oxygen.

Peter did let me know that Rev. Jim Greenfield, the priest who gave Peter and I pre cana and baptized Mattie, is visiting us tomorrow to discuss Mattie's funeral and answer other questions we have. I have known Jim for years, since he was the director of the Newman Center at The George Washington University. Jim is also a mental health counselor and gave me my very first client, so I feel very comfortable talking to him. I just wish that the conversation was of something more life affirming. Peter and I have been talking about what to do to acknowledge Mattie's death without having a typical wake. We will certainly have a funeral, but growing up I went to enough wakes with open caskets, that I know this is NOT something I want for Mattie, not for a child. Instead, I am reflecting on what my neighbor, JP, told me about. He told me about a traditional custom in Puerto Rico, in which there is a celebration honoring the memory of the child before the actual funeral. So I am giving that some thought and will discuss this with Jim tomorrow.

We would like to thank Nicole L. for a lovely home cooked dinner and fabulous cookies. Thank you for your support!

I would like to end tonight's posting with two messages I received today. The first message is from my friend, Charlie. Charlie wrote, "This continues to be a journey of sadness and loss of childhood joys for Mattie. It hurts to read how much he wants to do but cannot; he lacks the energy to play, the ability to eat. And how awful for you to have nourishing food that Mattie is unable to partake of. We all take for granted our family meals; to be able to sit and enjoy them together. You and Peter have been denied that joy for some time and I wish I were able to give it back to you. I think Mattie knows he is fragile and that he is far sicker than ever and his wish is to remain always a part of your life. I hope even in the midst of these trying, exhausting days, there are moments of love to store in memory. I hope the chemotherapy to come is able to give him some physical comfort and relief from pain. We all continue to pray for you."

The second message is from a fellow colleague and friend. Diane wrote, "I was devastated to read that you’d run out of medical options for Mattie. I’m reading more and more of your blogs through tears. I so want to offer you and Peter comfort at this time when there’s none to be had. Months ago I wrote to thank you for starting Mattie’s blog. You inspired me to create an on-line community for my father in his sudden illness. Dad’s heart attack led to a cascade of organ problems—above all, compromised lungs. I’m heartbroken to realize your experiences now echo ours. Maybe it will help to share how your family’s served as a beacon for me and surely hundreds of others this past year. There’s so much to learn from your blog. Above all, your family’s strengths. Your gifts as parents. Also the dedication and skill of (many) medical staff. As you’ve seen, critical care nurses don’t just employ technique, but also empathy and insight. The best doctors share their expertise, but also their tears, with family making life-and-death decisions. Also the import of friends, family, and community. Finally, to my surprise, and a little embarrassment, I find each blog puts my own experience more into perspective—recalling last year’s hospital sights and sounds with less passion. Please know that you have one more warrior here in your fight against osteosarcoma and childhood cancer. Your family’s in my prayers and the prayers of so many others. Perhaps someday we’ll understand how and why those prayers were answered with such challenges."

Friday, August 21, 2009

Friday, August 21, 2009

Quote of the day: "When someone you love becomes a memory, the memory becomes a treasure." ~ Author Unknown

We continue to see a decline in Mattie's energy level, and what was a real wake up call for us was that Mattie was too tired to get out of bed today. In fact, he remained sleeping for most of the day until 3pm. At 3pm, he decided to wake up, and I moved him from his bed to my bigger bed, where he could snuggle with me and watch a video. Mattie was in a very snugly mood all day, and really wanted my attention and my presence. He told me multiple times today that he loved me! In addition, I have noticed that Mattie listens to every word I say. If he hears me compliment someone else, or even something else (for example he got very upset with me when he heard me say that the strawberries we received were beautiful and delicious) he gets very upset. He will then say to me, "am I not as beautiful or special?" Prior to Mattie's illness, such a statement would be ridiculous and would need to be addressed, but now, I remain calm and assure him that nothing compares to him in my eyes. He is the best, the sweetest, the brightest, and the most loving. But Mattie's insecurities about himself on some level are very intuitive, because I believe he senses his own demise, and by looking for this reassurance, he is trying to secure his importance in my eyes, and in his own. What he can't possibly understand though, is as his mom, he will always be my shining star, my one and only, and my little love.

We want to thank Beth E. for a wonderful lunch. Thank you Beth for the fantastic tomato salad with fresh basil, and the amazing fruit, homemade whipped cream, and angel cake! You spoiled us today. Mattie hasn't opened up the gift you gave him yet, but thank you so much for thinking of him.

Mattie eventually decided to go downstairs today, and he played for a bit with my parents. They continued their "Captain Mattie" game, except Mattie named my dad "Captain Crybaby Pop-Pop who Poops A lot, Spraying Pee-Pee Out of his Head." In fact, Mattie and my mom made a sign to signify this pronouncement. In the picture, you can see Mattie holding up the sign indicating my Dad's new name in the Captain Mattie game. When I saw this name, I was at first shocked, but then I reminded myself Mattie is 7, loves potty humor, and this whole scenario made him laugh! So I welcomed the humor! But I am tired and emotionally worn out, so my sense of humor is waning these days.

While my parents were playing with Mattie, Peter and I went to lie down for an hour. As the afternoon wore on, Peter and Mattie started to build a Lego set. Mattie appeared to have the energy to do this. However, as the evening wore on, Mattie had a major meltdown when it became dinner time. Mattie did not want Peter and I to eat at the table with my parents. He wanted us by his side on the floor. Since Mattie EAT and DRINKS NOTHING by mouth, he gets very agitated when he sees Peter and I eating. This brings about a great deal of stress in our household because clearly Peter and I can't go without eating. The smell of food makes Mattie nauseous, and then the other problem is Mattie claims to be starving. However, whatever he ingests, he lands up vomiting. In any case, Mattie got so worked up tonight, that he needed IV Valium to settle down. It wasn't a pleasant sight, and he landed up vomiting and really panicking over the whole concept of dinner time.

Needless to say, having many rounds of these emotional events are very wearing on us, and of course heart breaking to watch for Mattie. No one should have to live this way, but especially a seven year old. If you could see what Peter and I observe now on a daily basis, and the hourly medications we have to push through his central lines, you have to wonder what kind of world do we live in, and what is God's plan here? I must say I don't get his plan at all, and seeing Mattie in so much pain and so debilitated is something that I will have lasting memories of. In fact, while I was lying next to Mattie today, he told me that he doesn't feel well. He couldn't describe what is bothering him, but he knows something is just not right. In fact, I can see he feels worse than when he was on high doses of chemotherapy. I think that speaks volumes.

The journey of palliative care is not an easy one. It breeds isolation at home and also disconnects you from the living world. We are absorbed in a 24/7 world of pain, IVs, oxygen tanks, and other horrific sights and sounds. It is almost indescribable, but I assure you, I wouldn't wish this on anyone. I appreciate the continual virtual prayers that are being sent for Mattie and my family. We need each and every one of them, because our daily existence is not only bleak but depressing.

At around midnight tonight, as I was administering Mattie more medication, and Peter was rubbing vaseline on Mattie's lips, Mattie let out with a tiny scream. I immediately panicked, and being tired myself, I landed up screaming too. Why was he screaming? He screamed because his front tooth, which has been hanging by a thread for weeks now, finally popped out! I wasn't sure what I was doing first, pushing medication through Mattie's central line, or catching the blood dripping from where the tooth emerged from! Once I pulled myself together, we then started talking to Mattie about what he wanted from the toothfairy. So in the picture you will see Mattie holding his wooden toothfairy box, which I remember buying with him the last time we were in Florida, and smiling with his front tooth missing. He had me write a note to the toothfairy, because he has requested that she NOT take his tooth, but still leave him some things such as a hotwheels jeep and truck! He has it all figured out.

I would like to end tonight's posting with four messages I received today. The first message is from my friend, Charlie. Charlie wrote, "All of us are already mourning the loss of Mattie as the little boy with boundless energy. Right now, not only are you losing the Mattie you love but the Mattie of the future; all of the things he will not be here to accomplish. This is a life long loss; it is one you will battle again and again. I can only say while Mattie will never have all these experiences, he had a life as full of love as those who lived far longer. I also grieve for the tightening of your circle as Mattie's energy wanes; his focus is on you and Peter and that takes a tremendous toll above and beyond what this year has already wrought. I wish you the needed strength to support Mattie the rest of the way. As I read Thursday's blog the other thought that stayed with me was the word "legacy" and how could I incorporate that into my life and honor Mattie's battle? I thought I would share with you what this year has meant to me. My legacy from Mattie is that I am more sensitive to others; I now actively look for ways to help, the small sometimes overlooked kindnesses of smiles, kind words, and small favors. It is amazing what these little "politenesses" can do. In Judaism, we learn about mitzvot, those good deeds that are an obligation for each of us to perform. When you do them with love in your heart, it becomes a blessing on the world; I do them with Mattie in mind so that the deeds may be part of his ongoing gift to the world. I hold you in my thoughts and prayers."

The second message is from a former SSSAS teacher, and Mattie's piano teacher. Many of you may recall that Caroline worked throughout the year with Mattie. Caroline wrote, "Greetings from South Florida. Even though I am many miles away there isn’t a day that goes by that I don’t think of you and Mattie. Through your blog I feel like I’m still just a drive over the Memorial Bridge away. I don’t know why it has been so hard for me to write to you after the latest CT results. The devastating news that the beginning of August brought has almost put me in a state of denial-that your child who told me that he could do anything he wanted to do even though he has bone cancer, is now truly fighting for his life. It’s an ever evolving paradox. As I read about his daily struggles to do the simplest tasks that I take for granted, such as eating or being able to sleep through the night without major narcotics, I realize that his spirit is becoming even greater and more powerful in his weakness. I think Joan Holden made the comment that she has yet to see a picture where Mattie isn’t smiling. As Mattie becomes weaker, his spirit is becoming stronger. Your journey over the past year has touched thousands of lives and your ability to be forthcoming with your innermost feelings has truly changed the way I think of weakness. There are no words of comfort to offer you right now. It’s hard for me to read the blog now without crying. I can promise you one thing- that the legacy of Mattie will live in my heart forever. Mattie has made me realize the power of the human spirit, especially in childhood. Whether it’s in the classroom or in the hospital, there is so much to learn from children. Mattie himself knew that he was becoming progressively physically weaker, yet he allowed his spirit to become stronger and stronger with each passing day, despite countless miserable ones."

The third message is from a former student of mine. I was very touched by Ariel's message and her desire to become a pediatric oncology nurse. I told Ariel, I have many phenomenal oncology nurses I can easily introduce her too! Ariel wrote, "It is still extremely difficult for me to find the right words, but I wanted to write you again to let you know that you, Peter and Mattie continue to constantly be in my thoughts and prayers. I am in Greece with my mom right now, but the first thing I do when I wake up is check the blog to see how Mattie is doing and every morning my heart breaks for all of you, as I read that Mattie's condition is rapidly deteriorating. I really hope that the oral chemo will slow down the progression of the disease, and help control Mattie's pain. I also wanted to let you know that through your blog you have helped me in choosing my career path. Before I began following Mattie's story, I decided that I wanted to be a Nurse Practitioner and always knew that I would work in Pediatrics. However, reading Mattie's story and hearing you talk about his wonderful nurses has made me decide to go into Pediatric Oncology. Everyone tells me how difficult it will be, and they may be right, but someone has to do it and if I can help children like Mattie and make their battle any easier, then that is what matters. So thank you! I so wish that there was something I could do or say to ease the pain and heartbreak you, Peter and Mattie are experiencing. Please know that all of you are always in my thoughts and prayers and I send lots of hugs your way!"

The last message was sent to me by Jennifer G. Jennifer is a fellow RCC parent and friend, and her father is an Episcopalian Priest who wrote two beautiful prayers for Mattie and Mattie's community. Thank you Jennifer.

A Prayer for Mattie
Blessed Lord we thank you for being where we cannot be.
We thank you for keeping vigil in Mattie’s heart and mind
For laying your hand on his pain and fear
For knowing the path he is on and where it will lead
For opening the door to his future and welcoming him with loving arms
For sharing life with him.
Help us to entrust him to your care and ourselves to your strengthening and healing grace.
In Jesus’ Name we pray.

A Prayer for Those Who Love Mattie
Lord it is all out of order.
Death belongs at the end of a long life not at its beginning.
It is to be the silent tribute to the aged not the violator of youth.
This is all wrong.
But cancer is a cruel enemy of life and love and all that is joyful.
It brings death where it does not belong and it breaks our hearts.
Can it also break our hopes?
Can it destroy more than the physical life it claims?
Can it blind us to your presence in this awful moment?
Make our faith strong enough to answer NO.
Make our faith wiser than our feelings
Deeper than our despair
Sharper than our anger
And more powerful than our sense of helplessness.
Let us thank you for the light you give us in this dark place
The light of companions in their multitudes
The light of promises of stunning hope
The light of strength to bear the unbearable
The light of excruciating love for this child.
Help us to use these to illumine our path, still our fears, open our hearts and heal our violated love. In Jesus’ name we pray.

Thursday, August 20, 2009

Thursday, August 20, 2009

Quotes of the day (Thanks Tad and Charlie): “If only you could sense how important you are to the lives of those you meet; how important you can be to people you may never even dream of. There is something of yourself that you leave at every meeting with another person.” ~ Fred Rogers

"There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go." ~ Author Unknown

Peter stayed with Mattie last night in order to give me a break. I have been reluctant to do this to Peter, since Mattie has been extremely demanding of him during the day. Mattie is going through a Daddy Phase, which I have seen happen a couple of times this year when Mattie is under particular stress. Heightened stress brings about intense anxiety for Mattie, and as a result Mattie really needs both Peter and I to be physically present at all times. I can assure you this form of intense caregiving is overwhelming, all encompassing, and when we reflect on what is happening to Mattie during these intense moments, it is almost too much to bear, tolerate, and accept.

For me, today was a day of sadness. I am not sure what got to me more. The fact that Mattie's body is declining (in fact, just within one week's time, Mattie has become very weak and needs oxygen every hour of the day), Mattie needs periodic naps, or that he really dislikes leaving the house. Just two weeks ago, Mattie could spend six to seven hours in the Lombardi Clinic. Today, after 90 minutes he had it, both physically and mentally. All of this is a constant reminder that Mattie is very sick. If all of these things weren't bad enough, then I reflect on the fact that Mattie will never be returning to his school, he will never learn to read, write, play the piano, play a sport, attend a school dance, join the cub scouts, have a girlfriend, go to college, get married, have a family, and the list goes on. All of these things that we want for our children, have been robbed from Mattie's future, and in essence from our future as well. This is a reality I don't care facing, but in the moments when I am brave enough to go there, it makes me feel directionless and hopeless. Hopeless because I have learned this year that I have very little control over anything in life. This was certainly a very different philosophy than how I have lived my life up to now. But cancer has shown me that there are SO many things beyond our control, and no amount of fighting, advocating, and even love and prayer can change the outcome of things. This is a very sobering reality for me, and perhaps for some of you as well who are on this journey with us.

Mattie went to clinic today to have his blood drawn to monitor the vancomycin levels in his blood. He is now up to the therapeutic dosage needed to fight off the bacterial infection he contracted. We were fortunate enough that Jocelyn changed her clinic appointment to today, and was in clinic and very motivated to play with Mattie. Mattie actually was excited to see Jocelyn and asked about her when he got into clinic, because he did not see her right away. Jocelyn, Mattie, and Jenny did a great box project together. They designed an apartment complex with a huge trash shoot. However, no trash shoot is complete without trash. So Mattie had everyone making trash to send down the shoot. Jenny was using a hot glue gun and putting together teeny tiny soup cans and pizza boxes. It was a riot! However, Mattie became upset when a young girl in the clinic decided to play the piano and sing. She was having a good time, which is understandable, but it was sensory overload for Mattie and he started to shut down. In fact, he decided to put paper cups over his ears to block out the noise. This is just another example of how different my family is now from the rest of the oncology patients. We are living almost in a parallel universe, because as death approachs, Peter and I can no longer understand, appreciate, or even fit into the healthy world that we are surrounded by. I snapped some pictures of today's visit to clinic.

Left: Mattie and Jocelyn discussing how to transform a cardboard box into a structure. The irony is Mattie has created MANY cardboard box structures while at the hospital this year. Many of these creations were thrown out, after we captured them through photos, because they were just too large to store. But about 10 or 15 of these boxed creations are in Ann's basement. At the time I felt bad doing this to Ann and her house, but now I am so happy we saved these special projects.

Right: Mattie covering his ears, because he did not want to listen to a young girl singing in clinic.

Left: Jocelyn, Jenny, and Mattie! You can see the apartment cardboard box complex they designed, with a large trash shoot tube connected to the building. In fact, Jocelyn is holding up some of the toy trash!

Right: Denise (Mattie's social worker), Jocelyn, and Mattie holding up a styrofoam head. On the head Jocelyn glued pretend hair. Mattie told Jocelyn that he is tired of people feeling his head and his new hair. So Jocelyn decided to make up this head that Mattie can carry around with him. She told him to instruct people to touch the styrofoam head instead of his own. He LIKED that idea a a lot!

Katie, one of Mattie's wonderful HEM/ONC nurses from the PICU came down to clinic to visit Mattie today. Katie is not only a fabulous nurse, but a truly supportive and loving person. Katie e-mails me on a regular basis, and it helps me to see that if I need nursing support, I don't have to stray far, I just need to call the PICU. That is a very empowering feeling in a time when we feel so lost and hopeless.

We took Mattie home today before we ever got to see Dr. Synder, Mattie's oncologist. When we got home, I helped Peter and Mattie get settled, and then went upstairs and took a two hour nap. The emotional toll of all of this is wearing me down physically. Peter played intensely for two straight hours, and naturally this involved Legos. I snapped a picture of them playing with Lego airplanes today!

My parents came to clinic with us for a little while today and then also came over later in the afternoon. However, Mattie was in one of his shut down moods, and only wanted Peter and I to basically interact with him. My parents have become experts now in understanding Mattie's need to do this, certainly it can be hard to experience, but as we all keep reminding ourselves, it is about Mattie now. Whatever works for him is what works for us. Mattie did take a nap on my lap this afternoon as well, and as evening came around, he said he was hungry. He wanted me to make him homemade waffles, which I gladly did. However, after one bite, he threw up. This is so painful to watch someone who is so hungry, and yet can't eat!

I had the opportunity to talk with Dr. Synder tonight on the phone. Mattie's electrolytes are all over the place, and they will need to be adjusted in his TPN nutritional IV supplement this week. In addition, most likely Mattie will need a blood transfusion next week. But Peter and I have consented to start Mattie on an oral chemotherapy drug called, VP-16. This has no known side effects, and it could potentially ease pain and slow down the progression of the disease, maybe. It is worth a try. However, I told Dr. Synder I am opposed to other more aggressive forms of chemotherapy because it not only will prevent the inevitable, but it could make Mattie more physically ill and weaker. I am not electing anything right now that will bring about further suffering upon Mattie. The treatment must be about making Mattie happy and more comfortable, and not about any of my own desires to prolong his life. Dr. Synder understood my position and honored that. So Mattie will begin the oral chemotherapy next Thursday, and will also undergo a CT scan next Thursday so we can see what the tumors look like before the start of VP-16.

We would like to thank the Frye family for an incredibly generous dinner tonight and support. Julie we thank you mom as well for helping to make our evening so special. Mattie loved the Space Police Lego set. Thank you for thinking of him and for the special pastries as well!

I would like to end tonight's posting with five messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I am glad Mattie is home with you and that he is able to enjoy some of his playthings even though his energy level is clearly waning. I hope you are able to see some results from the medication and that Mattie will get some additional pain free time with you. It is clear that writing about Mattie's impending departure from your lives is almost impossible; your grief whispers in each line louder than shouting and my heart cries in response. There is no solution here; I can offer nothing except my presence as a witness and a friend. I hold you and yours gently in my thoughts today and every day. The virtual prayer group will continue to pray each evening for pain free days to come."

The second message is from a fellow SSSAS parent and friend, Tamra. Tamra wrote, "Each night or morning that i read a new blog entry, there is a great reminder that there is so much goodness in the world yet it also can be fleeting and fragile. I am mesmerized by the beautiful softness of Mattie's face..the freckles, the tender eyes, the gentle hair sprouting, the small but brilliant hands that can build anything, drive a care, navigate a boat, and a mind that reveals both hilarious dialogue and profound and loving thoughts..an imagination that transcends brilliance.. the presence of a seasoned performer when he is in magician mode. You and Pete have not only given him courage and wings, but you have taught him to soar in every situation..the love of parents is gift beyond words, but the heart knows of its true meaning...for today, we wish you tender times with some perhaps a sprinkling of humor, fun and some pleasant time on the deck."

The third message is from our friend, Coach Dave. Dave is the head football coach at Mattie's school. Coach Dave wrote, "I just returned from Rhode Island and am in the middle of coaching meetings. We begin practice on Saturday. I am thinking about you, Peter and Mattie. I read the blog and my heart is breaking. You have the most wonderful family and I can’t even begin to understand why this is happening. He is such an amazing boy and you and Peter are incredible. I also wish we could pull out that cancer and beat the * out of it. Ev and I are thinking about you all non-stop. Please tell Mattie that all of the football coaches say hello and that he is our little champion. His courage is extraordinary. My best thoughts, wishes and prayers."

The fourth message is from Mattie's former babysitter Emily W. Emily sent me this Mattieism, and I wanted to share it with all of you! Thanks Emily. Emily wrote, "I babysat Mattie for the 2 years that I lived in D.C. and developed a very special relationship with Mattie. I have many memories and stories of my babysitting adventures with Mattie but for right now, one stands out very strongly....I was stung by a bee in the summer of 2007 and because I am allergic, the calf of my right leg became very swollen and infected. The day after I was stung I went over to Vicki and Peter's place to babysit Mattie, and Mattie immediately noticed the infection on my leg. He rushed over to Vicki and Peter and asked them how they could help me! The compassion and concern he had for me was unbelievable coming from a 5-year old! Anyway, the following summer (the summer of 2008...approximately one month before Mattie was diagnosed) I came over to babysit Mattie. He wanted to play outside in his blow up pool and so I pulled up a chair and he splashed around. We were splashing each other when Mattie's attention was immediately diverted to a wasp flying over us. I noticed the wasp after seeing Mattie look up and said, "Look at that bee! Be careful!!" Mattie looked up at me and said, "Emily, it's a wasp! Now, don't you remember what happened to you last year!!! You go inside and I'll fight off the bee because we can't have you getting stung again!" The bee/wasp/whatever flew away, but I turned to Mattie when we went inside and said, "Mattie, that was so brave of you! You saved me from the bee! You are my superhero....You are my Mighty Mattie!" From that moment on, I called Mattie my Mighty Mattie. He always seemed to look out for me even before the bee situation but his concern, compassion and genuine caring nature has continued to leave me in awe."

The final message is from a fellow RCC parent and friend. Bob refers to himself as Bob #2, because he knows that Bob Henshaw will always be our Bob #1. Bob wrote, "In solidarity with the army of Mattie supporters and bloggers, I was deeply saddened to read about the spread of Mattie’s cancer. In the past two weeks as this news has begun to sink in, I have thought about your family often and I have tried to reflect and process some of the feelings from this past year’s journey. While the grief of losing Mattie will be profound, and at times feel unbearable, I hope that you and Peter will find moments of comfort in knowing that this journey has taught many of us some very powerful life lessons that will truly change us for the rest of our lives. At last week’s prayer service, we talked about the legacy that Mattie will leave behind. The choice of the word “legacy” was very intentional because the impact of his life and your family’s courageous fight against cancer will transcend an earthly life that will be far too short.

So, what is Mattie’s legacy and what have I learned from Mattie and this journey? Here are just a few things:

Life is precious – Mattie’s journey has inspired me to live with more of a carpe diem spirit. Tomorrow isn’t guaranteed, so I don’t wait until tomorrow to hug my kids and wife, tell them I’m proud of them, and that I love them. Life is a gift and while I’m sure to make many mistakes, I don’t want to live with regrets for things I haven’t done or said.
Live in the moment – I’ve really tried to be more present in the moment. Allowing my mind to drift too far into the future seems to bring unnecessary anxiety, so I’ve tried to sharpen my senses and really focus my lens on what’s happening in the now, and it makes a difference – being a better listener, appreciating a smile, enjoying laughter…
Cherish relationships – When trivial matters are put aside and life is boiled down to what is most meaningful, it’s our relationships that matter the most. This is abundantly clear in your relationships with Mattie and with each other. I hope to continue to invest in my cherished relationships, because in the end, this is what life is all about.
The human capacity for goodness – While we all wish there was never a need for a Mattie blog, the outpouring of love and support has been a refreshing blast of people’s willingness and desire to reach out to those in need. There is not adequate room to list all the amazing people and deeds from this journey but the extraordinary efforts of Ann Henshaw (and family); the doctors, nurses, and child life specialists who continuously go above and beyond the call of duty; the meal providers; the fundraisers; the countless prayer vigils; the Lego store that opens after business hours…all incredible acts of kindness.

In closing, I just want to say how much I have admired your tenacity in this battle with a terrible disease. You have fought like hell every inch of the way and given every ounce of your beings to give Mattie a chance at recovery and a longer life, and when that was no longer an option, I think you have made the right choice to manage his pain as best as possible and cherish the time that you have left with him. I pray that within the many tough days that lie ahead, there will be room for moments for peace, rest, laughter, and cherishing the sparkle in Mattie’s smile that we are all so familiar with. Please know that as you wade into these unfamiliar waters, you are not alone. There is an entire community supporting you and willing to do whatever is needed in the present moment and beyond…after all, we have a legacy to uphold. Peace be with you, Bob #2"

Wednesday, August 19, 2009

Wednesday, August 19, 2009

Quote of the day: "Time is a companion that goes with us on a journey. It reminds us to cherish each moment, because it will never come again. What we leave behind is not as important as how we have lived." ~ Patrick Stuart

Mattie is slowly dwindling right before our eyes. In fact, there is a dramatic difference in Mattie's energy, breathing, and stamina in just one week! He is unable to make it through any point during the day without oxygen. He also takes multiple naps during the day, and we can tell when naps are about to happen, because his eye lids get so droopy, he can bearly keep his head up. Though he fights sleep, in the end, the exhaustion always wins out. It is during these down times, I want to literally pull the cancer out of his body and do battle with it head on. Clearly, chemotherapy and surgery couldn't do it, and all I can say is osteosarcoma is lucky that it attacks the body on the inside, because if it could be seen, I imagine all osteo parents would bomb the hell out of it.

Despite Mattie being so tired today, he did have a full day. My parents greeted him this morning, and I prepared them for the fact that Mattie may not want to have anything to do with them. However, when they arrived, Mattie got up off the couch, climbed onto the floor, and was ready to play. My parents created a game called, Captain Mattie, many years ago, and each time they visit, the game just picks up from where they left off. In true Mattie fashion, he was eager to play. He wasn't as animated, but definitely was engaged. My parents spent a couple of hours with Mattie, and then were invited out to lunch by Susan D. Susan is Mattie's director of school counseling at SSSAS. My parents are very fond of Susan, and I appreciate her kindness and support she has expressed to my parents this year. Susan also brought Peter and I lunch, and gave Mattie a wonderful motor boat to add to his pool! Thanks Susan!

While my parents were out, Mattie did take a nap and then when he woke up we played a car racing game together on the floor. Mattie couldn't move around on the floor, so I did the moving for both of us. Mattie is unable to move because he just doesn't have the energy, but also because he is hooked up to so many IVs, that it makes moving challenging. I also encouraged Peter to get out of the house today to get a hair cut and clear his head. I am glad he did this, and not that it improved things dramatically, but breaks are very necessary to be able to make it through our long, tiring, and heartbreaking days.

Left: Mattie with my mom!

When my parents came back this afternoon, after picking up another anti-emetic for Mattie at the pharmacy, they continued to play with Mattie. While they were doing this, I sat outside on the deck and read the articles that Dr. Synder sent me regarding chemotherapy options for Mattie. There are two options being presented to us: 1) gemcitabine and docetaxel, and 2) oral VP-16 (etoposide). What you need to understand is neither option are used for a cure, but instead to treat and ease pain and hopefully slow down the progression of the disease. None the less, the data on both options is minimal, and in many cases is only preventing the inevitable. Peter and I discussed the first option, which is chemotherapy with side effects such as neutropenia, fluid retention in the lungs, and bleeding. Because of Mattie's weakened condition, we can't see putting him through this in good consciousness. The second option is far LESS invasive. It involves taking a pill for twenty days (oral VP-16), and there are no known side effects. In our opinion this is worth a shot, even at the hope it eases Mattie's pain and therefore can increase his time with us. On Thursday, Mattie has a clinic appointment to check his vancomycin level in his blood, and we will follow up with Dr. Synder regarding these options then.

Mattie had a visit from JJ, our resident Jack Russell Terrier. It is funny, normally JJ needs to be on a leash when he is near Mattie. But today JJ walked into our home, and was very calm and obedient around Mattie. It is amazing how perceptive animals are, and I believe on some level JJ really does care about Mattie! After all they practically grew up together!

This evening Mattie wanted to ride Speedy Red. Thank goodness Speedy Red still provides Mattie with a level of joy and fun. He wanted to show my parents how well he could drive, and frankly Mattie is a natural. He took to driving like a fish takes to water. We snapped some pictures of Mattie outside. Thank goodness Speedy Red has a trunk that can handle IVs and an oxygen tank!

Left: Vicki and Mattie!

Right: As Mattie is getting more physically exhausted, he is unable to turn the steering wheel, especially when my weight is in the car. So when I got out of the car, Mattie was able to drive for quite a long period of time.

Left and Right: What you can't see in these pictures, is that Mattie is chasing either Peter or I around with his car. Today was a hot day, but that did not stop Peter and I from racing around, especially if that meant it would bring a smile to Mattie's face. Somehow running your parents over with a car can be very entertaining!

Mattie received a very large gift today from his friend, Kazu. Kazu and Mattie met the summer before they started kindergarten together. I still remember the day I met Kazu. Mattie and Kazu were enrolled in summer camp together at SSSAS. Dropping Mattie off was intimidating for me, mainly because he clung to my leg. I quickly assessed that Mattie needed a buddy to be paired up with to make this camp experience positive. So one morning I walked Mattie into the camp classroom, and I spotted Kazu who hadn't paired up with anyone yet. So literally I dragged Mattie over to Kazu and introduced them to each other, and it seems to me from that point on, they united together in camp and have been friends ever since. Kazu gave Mattie a huge Lego set tonight. We can't thank the Ferris family enough for such an amazing and generous gift. I am happy to report that Legos still make Mattie happy and we feel very blessed to have friends like you!

We want to thank the Pisano family tonight for a lovely home cooked dinner. Your cookies got me through numerous Speedy Red laps that I had to run!

I am not feeling well tonight, so I am ending this posting now. But before I do, I would like to share four messages I received today and another music video. The first message is from my friend, Charlie. Charlie wrote, "One day marches into another and it must be incredibly difficult to wish for an end to exhaustion as that would mean that Mattie is gone from your lives. I think most of us talk about palliative care quite unknowing what it really means and what it requires of those who are asked to do it. I stand in awe of the superhuman effort that you and Peter have so far managed but I worry for you as well. I am glad you thought to check in with Sarah at Georgetown because managing the level of medications that you are, normally requires a professional (you should have an honorary RN by now) but the level of exhaustion you are facing can cause even the best trained person to make an error. I hope you are able to sit down and work something out with Mattie that will allow you to do the things you need to so that your family can go on functioning. I will continue to pray that you see more Mattie "sunshine" to help you in the remaining cloudy days ahead."

The second message is from one of Mattie's teachers, his technology teacher. Many of you may recall that Mary visited and worked with Mattie multiple times this year both at home and in the hospital. She is a special and beautiful person, and we are privileged to have the opportunity to get to know her this year. Mary R. wrote, "My heart is heavy for you but wanted to share with you how great a gift Mattie has been to me and to others. He always walked around school with the biggest of smiles which is a reflection of you and how happy a child he has always been. He has the best outlook on life which is instilled to children by their parents and his love of trivia facts always made for a fun and learning conversation. Mattie is an amazing child and he has made a difference in my life. He has given me a gift that I will carry with me the rest of my life.....to walk with a smile...it makes others smile too. To keep a positive outlook on life...it will make others look up too and to always have something fun and interesting to share. It connects you to people. Thank you for sharing Mattie with all of us and with especially me."

The third message is from my colleague and friend. Nancy wrote, "The blog has become an important ritual for many of us. Whether one checks in once in awhile or everyday, it provides everyone with insight and information about Mattie and the family. Although, none of us can really know what this last year has been like for all of you, we sit by trying to come up with ways to respond and support each of you. The Team Mattie has been one such instrument. Ann is such a dear friend and I am glad that you have her. She is aware of what you need even when you might not give yourself permission to do it yourself. Out of need, new ideas can flourish. And that is what the stories about Mattie will be. What a wonderful healing tool for Peter and you, A Book about Mattie! I wish that I had a specific Mattie story to tell for your memory, yet, my only knowledge of Mattie comes from your experiences. As someone wrote last night, the bond between a parent and child is something special. Even when you think that you don't have a drop more to give, you do. The only reason that Mattie has sustained so much is BECAUSE of his Mommy and Daddy. G-d be with you all during this days of great struggle.I've been thinking about the first part of yesterday's blog. Americans, especially, have a difficult time dealing with death and dying. It is a taboo subject for many. Children, based on stories reported, are very intuitive about this . On some level Mattie already knows that things are different and I believe understands that his time on earth is limited. You will find the right time and words to begin this heart wrenching journey with him. I, too, found a quote this morning. It helped make sense to me when I needed answers and control over an impossible situation with Mom."Not knowing was hard; knowing was harder" ~ Toni Morrison....There is a post script: We often have to get to "harder" in order to resolve. Vicki, you have been such an inspiration to so many. I wish there was something more that I could do, physically, to help you. Mattie and each of you are in my prayers and more importantly, my heart. "

The final message is from one of my former teaching assistants. Liz wrote, "I continue to follow Mattie's blog and just wanted to let you know my thoughts and prayers are almost entirely focused in your direction these days. I don't think there is much I can say that hasn't been captured by those nearest and dearest you. I am amazed at how well everyone is putting their thoughts into words with this situation--I have sat in front of my keyboard a number of times trying to pen something meaningful but usually end up feeling like what I write is too simplistic to accurately capture the emotion behind the words. As a new parent, I do feel like I have a new appreciation for how deep your sadness must run. I read the message you posted from Rich earlier in the week and how he essentially said reading your blog has enhanced his relationship with Claire. This resonated with me so much that I think my heart was ringing. I look at my daughter and value *every second* I am able to spend with her. I find joy in the simplest things-- cooing, laughter, the smile I get when I pick her up, and even changing her diaper! And then I remind myself to soak it in because life can change in a second and nothing is guaranteed. I only met Mattie once (back in the day when I was TA'ing for you) but his legacy to me will be one of love. I think any parent who knows about Mattie hugs their child a bit harder and a bit longer each night. As a new mom, I am simply in awe of you. I know you are focused on Mattie's legacy but I believe yours will also be one of love."

As I am sure many of you can gather by now, I relate music to my life. In fact when I am unable to communicate my emotions, especially during times of such intense stress such as now, I can always turn to music to help me figure things out. I share tonight a song from the Musical Wicked, entitled, "For Good." To me, Mattie has changed my life for good. There are two particular verses in the song that speak to me and they are, "because I knew you, I have been changed for good," and "you will be with me like a hand print on my heart."

http://www.youtube.com/watch?v=CQJaZO2nfGg&feature=related

Tuesday, August 18, 2009

Tuesday, August 18, 2009

Quotes of the day (Thanks Tad and Charlie): "It is only natural that we and our children find many things hard to talk about. But anything human is mentionable and anything mentionable can be manageable. The mentioning can be difficult, and the managing too, but both can be done if we're surrounded by love and trust." ~ Fred Rogers (Mr. Rogers)

"When sorrows come, they come not single spies, but in battalions!" ~ William Shakespeare

When Tad sent me Mr. Rogers' quote, it immediately spoke to me, almost as if this quote was written with our situation in mind. I worry deeply about talking to Mattie about his terminal condition. It is not a question of will this discussion happen, it is a matter of when will this discussion happen. Part of being human is to ask questions about death and dying. However, this "mentionable" seems a little more unnatural coming out of the mouth of a seven year old. None the less this mentionable will have to become not only manageable but explainable. I do agree with Mr. Rogers wholeheartedly though, that with trust and love anything is possible. I have observed this without a doubt during Mattie's treatment. Mattie has an unconditional amount of trust and love for Peter and I, as is evident in his willingness to undergo all the testing, surgeries, and treatments he endured. Even after a year of torture, he is still putting up with whatever we ask him to, IVs at home and oxygen tanks within his bedroom. Talking about Mattie's death with him may be the hardest thing I will ever have to do in the near future, but I must take comfort that our trust and love for each other will be the force that once again carries us through the unthinkable.

Mattie had a more peaceful night of sleep last night, in the sense that he wasn't screaming in pain. However, he was up every two hours needing to go to the bathroom or needing something to drink or just plain reassurance. Mattie landed up taking two naps today. Totally unheard of, but the tell tale sign to us that cancer is taking over Mattie's body. Keep in mind that even through chemotherapy, Mattie rarely napped! It did not slow him down a bit.

When Mattie woke up, he was in less than a pleasant mood. To perk him up we gave him several gifts to open that friends had sent him. The first package was from a colleague of Peter's who is working in Africa. She sent him a lovely postcard and lots of drawings and messages from children living in the village she is working in. I normally try to post more upbeat pictures of Mattie, but I feel the picture on the left captures the Mattie that Peter and and I see and deal with all day. Mattie was happy on some level to open the gifts, but he is extremely tired, has nausea, and pain at times, which take its toll out of him.

Left: Mattie opening up cards that were sent to him. You can see he looks zoned out, very pale, and clearly not happy.

Right: Mattie received a lovely gift from his friend Louise. Louise graduated from SSSAS this year and before heading off to college, dropped off a gift for Mattie. The perfect gift for "Captain Mattie." A captain's hat. Mattie wore it today while he was playing with his boat in the pool on our deck.

Left: Mattie took a pair of BBQ tongues and tried grabbing things with it that he threw into the pool. He was playing this game while we were attempting to eat lunch.

Mattie was non-stop with demands throughout our attempt to eat lunch. In fact, Peter and I did not sit still for a second. Peter landed up feeling very ill from this experience, and I was extremely frustrated with the whole situation. I realize Mattie is very ill, but on some level he needs to give Peter and I breaks throughout the day, otherwise we won't make it. I tried to impress upon Mattie the importance of playing by himself even for a couple of minutes, so we could have lunch. But he moved passed that request, and instead just kept hounding us with one thing after another. Of course after the damage was done, he was apologetic, and kept saying he was sorry. It is pitiful. You don't want to hear your son dying of cancer telling you he is sorry, but on the other hand, Peter and I are human and his intensity and anxiety can be all encompassing and stifling at times. We all managed to work through this difficult moment, but it only highlights just how challenging our days are.

We never left our house today at all. In fact, Mattie has no desire to leave or interact with anyone. Though in all reality, after being home several days now, I realize it is almost impossible to take Mattie out of the house. Why? Because Mattie requires oxygen, all sorts of pain medications and anti-emetics, just to make it through the day. It is a non-stop juggling act! I have become a nurse without ever going to school for the training (though I have had the best examples to observe and learn from for 12 months). In the midst of having a very depressing and harrowing day, I needed to do laundry. In our complex, we need laundry cards to get access to machines. I always keep these cards in the same place, in the same draw in our home. I have done this for years. Returning the cards to their resting place when I am done using them is almost like brushing your teeth, you do it without being consciously aware of your actions. Today, I went to look for the cards in their typical place, and they weren't there. I tried looking everywhere for these cards, and couldn't find them. Certainly we all misplace things in life, but misplacing these cards today, was a signal to me that I am on total overload. Something so simple, became such a big deal to me, because I guess it just magnified how the trauma of Mattie's diagnosis has impacted me. During my time of panic, Ann happened to text message me and she quickly gave me a reality check, which in essence was to lighten up on myself.

Peter's mom was with us today, but despite that fact, Mattie kept pretty close to Peter and I. On some level Mattie feels very insecure and unprotected, and therefore in these times of uncertainty, clings to us, and shuts out others in his life. I am sure this was hard on Barbara, Peter's mom, but she understood and helped us today in other ways. None the less, it is sometimes hard for me to have others around us, because it is through their eyes that I see just how awful our situation is.

We want to thank Tanja for a special and generous lunch today. The fruits, salads, and sandwiches were greatly appreciated, and of course Mattie was thrilled to receive a LEGO! Thank you. We also want to thank the Bartlett family tonight for a very generous dinner. Thank you Leslie for providing dinner for our entire family. Peter's mom appreciated it, as did my parents, who arrived safely from Los Angeles.

Peter and I have been reflecting on ways we want to memorialize and remember Mattie. Recently I received a beautiful e-mail from a fellow SSSAS parent (you will see it below). In Debbie's e-mail she shared a story with me about Mattie that was precious. In fact this story is so meaningful, that it inspired me to capture more of them. I have asked Ann and Team Mattie to try to collect as many Mattie stories, sayings, and pictures you may have with us. It is my hope that we then compile all these items and are able to share them eventually with all of Mattie's supporters. For more information about this Mattieism project, please contact Jane Pisano (a fellow RCC parent and friend) at jpisano6@comcast.net. We thank you in advance for your efforts on this project, they mean a great deal to us!

As I am writing the blog tonight, Mattie and Peter are building a special Lego set that Peter ordered for Mattie. Something from the Indiana Jones series. In the picture you can see Mattie is on oxygen, something he needed for most of today. Mattie has little energy these days, and was building for about 30 minutes, but is taking another cat nap right now. We also reduced Mattie's fentanyl pain patch today from the 25mcg concentration to the 12mcg concentration, because I was concerned that he looked very groggy and in a fog yesterday. However, today he is experiencing a great deal of pain, so we had to put the 25mcg patch back on. All this trial and error is exhausting, and hearing your child in pain is excruciating. However, at 11pm, Peter and I had nothing left in our arsenal to throw at Mattie, other than IV Valium. Though Kathleen did a great job training me on Sunday, I got a little confused about what IV Valium wasn't compatible with in Mattie's central line. So when we are unsure, we just call our great HEM/ONC nurses in the PICU. Sarah Marshall answered the phone and within minutes answered all my questions, and confirmed that I indeed remembered what Kathleen told me correctly. I rather play it safe than sorry, and I am tired now, so I am taking NO chances. Thank you Sarah Marshall for helping me tonight! It is wonderful to have these fine ladies on call. It is our hope that Valium helps Mattie, because he is highly edgy and won't let either one of us, especially Peter right now, out of his sight. So much so, that if we go upstairs for a second, he will be downstairs screaming his head off for us! I realize this is due to his anxiety and his fears, none the less, despite rationalizing this, it is taking a major toll out on our nerves.

I would like to end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "I am hard pressed to think of anything worse than watching one's child suffer. Everything in a parent's heart and soul rebels against not being able to fix what is wrong or at least alleviate the pain your child suffers. That is part of the definition of a parent. I don't understand why this is happening to Mattie but I know your role is to fight as best you can for his comfort and to make his remaining time as meaningful as possible. Of course you have to stand aside emotionally from what is happening; otherwise I think you would scream at the heavens for answers to what you are all going through. I think there will come a point soon where Mattie will ask you what is going to happen; you may want to think that through as best you can ahead of time. No one knows Mattie better than you and Peter, so I am sure that you will find the right words when the time comes. I will continue to reach out to you through my prayers and I (and many others) pray daily for Mattie and for you. I am glad your family is able to come and be with you now and hopefully share a little of the caretaking with you. I hope and pray today is a better day for Mattie."

The second one is from one of Linda's former childlife interns who got to know Mattie very well. Lesley wrote, "On August 6th, Whitney called me in tears to ask if I had checked your blog recently. I could hear the panic and sadness in her voice, and quickly ran to a computer. Reading the blog that day was like being hit with a ton of bricks. Your family has been on my mind and in my prayers constantly. I can imagine the heaviness in your heart as you face the next stage of Mattie's battle. I always had such a strong hope and belief in Mattie. He is one of the strongest and most courageous people I have ever met. My experience as a Child Life Intern at GUH was such an amazing experience and a lot of that was due to the fact that I was lucky enough to meet you, Peter, and Mattie. What an amazing trio! You and Peter are some of the most amazing parents I have ever seen. You went to the end of the world and back to make sure Mattie had the best care, and you fought constantly for his well-being. You are an inspiration to all you meet. The old saying the apple doesn't fall far from the tree could not be truer in Mattie. He is a product of his amazing parents, and has touched SO many people in his short time. I can honestly say I will never ever forget the times I had at Georgetown with Mattie. I love his mischievous manner. My favorite memory with Mattie was his last day in the hospital during Whitney and my internship. It was chaotic with all the packing and the hearing tests, but he kept his spirits up no matter what. When you were talking to the doctors Mattie turned the little office into a playground! Whitney and I would take turns rolling him down the small ramp, and trying to run into one another. The three of us couldn't stop laughing! We all love Mattie, and it doesn't make any sense that he had to deal with this battle. Why do bad things happen to such good people? Its not fair. I know your heart is heavy, and there are no words that can ease your pain, but you should know that Mattie is an incredible human being who will be remembered and loved forever by all who were lucky enough to meet him."

The final message is from a fellow SSSAS parent and new friend. Debbie wrote, "For days, as I have read each and every blog post, I have drafted and re-drafted messages to you and Peter in the hopes that something I say might provide some comfort. I have come to the realization that, while that may be an impossibility, I simply must write to let you know that Peter, the children and I are with you. In the past year, we Mattie helpers were able to do “busy” things in an attempt to ease your day-to-day burden. Now we are standing beside and behind you as you share this time with Mattie. Julia has known for some time that you received the news on August 5 about the cancer having spread to many of Mattie’s organs. Just last night, I finally told Alex. He struggled with the news, asking me several times whether or not Mattie is going to live or die, and how I know this for certain. Alex trusts me to be truthful with him and to make things right in whatever circumstances it is possible for me to do so. He just doesn’t understand, and I’m certain that we will never understand.Meanwhile, Eliza and Tim remain blissfully unaware. Mattie’s name comes up in conversation, as always. Today is Alex’s birthday, and there has been talk about special birthday celebrations among the children. Mention was made of a past birthday celebration of Tim. His birthday is April 5. Tim reminded us that Mattie’s birthday is April 4. Once again, he recounted the story of his birthday celebration in Ms. Williams’s kindergarten class. That year, Tim and I had a big discussion about his special birthday treat for the children. Tim was concerned about taking chocolate brownies, which he really loves and wanted. He said that Mattie doesn’t like chocolate. I assured Tim that while Mattie would surely take his preferred treat (non-chocolate) on his birthday, it would be fine for Tim to take his own preferred treat (chocolate) on his own birthday. To ensure that Tim would not fret about his choice, we tucked several non-chocolate treats into his backpack for Mattie. That afternoon when I picked up Tim in carpool, he was bursting with excitement. He said, “Mom, you aren’t going to believe it. Mattie ate a brownie because it was my birthday! And he doesn’t even like chocolate. He did it for me!” What a gift for Tim – a life lesson in putting the wishes of someone else above your own, for the sake of friendship! I wish with all my heart that I could give the gift of something to ease your pain and Mattie’s suffering.In a recent blog posting, you included a quote from Van Gogh: “Love is something eternal…” One evening, more than six years ago, days before his death from this monster, cancer, my father and I had a conversation. The hour was late and I was trying to rest on one of those recliner chairs in his hospital room. I was distraught, and not wanting to believe that Daddy was not going to live much longer. Though he was spending his last days in a fog of pain and anti- anxiety medications, he continued to soothe the emotional anguish of my mother, my three sisters and me. Daddy said that, though his remaining days on earth were dwindling, and he no longer knew what to ask for in his prayers, there was one thing that he knew and held close –- without question and as surely as anything he had ever known. Our love, the love that Daddy and I share, would remain, in his heart and in mine. As he left this life, he would carry that love with him and I should always know that our love is true and pure and never-ending. His love for me will always reside with me. Though it is absolutely outside what our expectations are or should be, that a child precedes a parent in death, the parent-child connection is the same. Vicki, you and Peter share a love with Mattie that will remain. It will not end with his life.I pray for peace and loving time with your precious child in the coming days. Please know that we are with you, as always, in love and in prayers."

Monday, August 17, 2009

Monday, August 17, 2009

Quote of the day: "There is no waste in God's world. There is no soul without a mission." ~ Rabbi David Wolpe

Sunday night was harrowing. In fact, if I don't have another night like this any time soon, that will be okay by me! However, the sad part is this will be one of many for Peter and I. Mattie fell asleep at midnight. He seemed absolutely exhausted. But by 2am, the fun started. Out of a deep sleep, I could hear Mattie's breathing, which sounded very strained. So I popped up and was in a panic. I sat there and watched Mattie for several minutes, I even used the pulse oximeter to measure his oxygen concentration in his blood (which was fine). Needless to say, I was getting totally frazzled over the sounds coming from Mattie, so I woke Peter up and had him come into the room to listen. Peter felt that Mattie was dreaming, which could explain the sounds I was hearing. None the less, by that point, I was in knots. The breathing issue was bad enough, but at 4am, Mattie was running a raging fever, vomiting, and was in pain. So I made the mistake of giving him Tylenol first to try to deal with the fever, but within seconds after administering it orally, he threw it all up. So then I moved to pushing Zofran through his central line for nausea, and finally when all else failed, I gave him a bolus of IV morphine through his pain pump. It was after the IV morphine that he began to calm down. But he did not want to sleep by himself, so I jumped into his small twin sized bed, and he cuddled against me and eventually fell asleep. But I remained there the entire night since his level of anxiety is so heightened.

Mattie had a 10am clinic appointment. His vancomycin level in his blood needed to be checked. This blood level needs to be checked every other day, and each day so far the concentration of the antibiotic has been raised slightly. I imagine that a certain level of this antibiotic needs to be present in the blood in order to fight off the bacterial infection. Before heading to clinic, we administered IV Kytril to Mattie for nausea, disconnected his IV TPN (nutrient), and then put together a supply bag of IV Vancomycin and Zofran (an anti-emetic) to take in the car with us. It was necessary to take these medications with us, since they need to be administered during certain times of the day. Just trying to juggle Mattie and these IV bags is a feat unto itself.

When Mattie got to clinic, he was all business. He wanted to get in and get out quickly. He wasn't interested in playing with Jenny or Jessie today either. But then again, Peter told Mattie that after his blood draw he could go to the toy store. So I do think that was a major motivator. Mattie had a good time at the toy store, and he was VERY focused on what he wanted. Apparently he has wanted a remote controlled fire rescue boat for a while. This was news to me. In any case, Peter's mom bought this gift for Mattie today, along with several new DVDs. When we got in the car, I started to brainstorm where Mattie was going to float this boat. I immediately thought of a kiddie pool, since this is something Mattie loved doing in the past. Since our most recent pool sprung a leak, Peter was on a mission to find a replacement. It all worked out well, and from the pictures, you can see that Mattie had a good time on the deck with his new boat. In fact, you will see another remote controlled boat in the water as well. Linda gave Mattie this boat at Christmas time, and Mattie took it out today so that we could have boat races in the pool. Despite Mattie being up and playing, he clearly was NOT himself in any stretch of the imagination. He could bearly keep his eyes open, and he was highly agitated. I attribute this primarily due to pain medication. He looked like he was in a fog all day, and his way of trying to break through the fog, was to be edgy, ornery, and difficult. Though Peter and I empathize greatly with Mattie, it is very hard on us to be around this level of edginess with constant demands being made on us 24/7.

Left: Peter helping Mattie learn how to steer his new boat.

Right: Mattie and his Grandma having a boat race!

As the afternoon wore on, I made sure that Mattie was settled with Peter and Barbara (Peter's mom). I then went out for a couple of hours with Ann. Leaving Mattie for any period of time brings a certain level of guilt upon me, yet, there are times I realize I need to step out of the picture if I am going to make it through the day. Today was one of those days, because trying to function on very little sleep, is becoming harder and harder for me. While talking with Ann, I realize I am just so emotionless. I am not disconnected from my feelings, but I am not allowing myself the time or opportunity to examine those feelings now. Why? Mainly because I need to function for Mattie. Sure there are times I cry, but for the most part I choose not to go there, because this is not what Mattie needs, and I can't emotionally function and care for him, especially when his care requires energy and persistence. We of course are not fighting for his life, but we are fighting to manage pain, and to let him live his life in as much comfort and dignity as possible. To some extent this fight is MORE daunting and heart wrenching than all the surgeries and chemotherapies he has endured already. These last memories of Mattie's life will haunt me forever, and if you think the word haunt is a strong word, then I ask you to pause and think about seeing your child unable to breathe, writhing in pain, and dying a little bit before your eyes each day. If that sight doesn't haunt you, I don't know what would! I believe that Ann and Team Mattie want to help Peter and I capture the essence of Mattie before he becomes sicker. We talked about videotaping Mattie, family portraits, and other great ideas. However, I must admit that I am frozen in my reaction to all of these thoughts. Mainly because accepting any of them right now, means that Mattie is dying. I am very cognizant of what is happening, but my emotions haven't caught up yet. None the less, I had two ideas tonight about what I would like to focus upon, and will share them with Ann shortly, as I am sure she will then share them with you. One thing is very clearly to me though, I am very fortunate to have Ann in my life and the support of all of Team Mattie.

When I arrived home, Peter told me that Mattie slept for a good chunk of the time I was out. I did call Dr. Shad and discussed with her my feelings about his pain meds, and I asked her whether we could lower the dosage on his Fentanyl Patch. She thought that was a good idea to try. After I got off the phone, Peter came into the kitchen where I was, and stopped and gave me a hug. I guess I looked like I was in need of support. He told me that when he hugged me, I felt like a bundle of tension, but as the minutes wore on and he rubbed my back, I started to appear more at ease. I mention this because in the midst of all this chaos and heart break, lies a couple, whose friendship and needs have been placed on hold for over a year. Peter's hug forced me to stop and realize just what a profound loss Mattie's illness has had on our life as a whole.

We want to thank the Ferris family for a wonderfully generous lunch and desserts today. Junko, thank you for introducing me to Founding Farmers! Also Mattie loved the Sponge Bob puzzle. We assembled and disassembled it multiple times today. We also would like to thank the Wright family for a lovely home cooked dinner and all the wonderful handmade cards with lovely sentiments.

Mattie sat outside with us on the deck while we were having dinner. While we were eating, he was playing with his fire boat and the pool. Mind you, Mattie is eating NOTHING by mouth. The only thing he consumes is milk. It is a very awkward feeling to eat in front of Mattie, but we have no choice, one has to eat to maintain this pace. While we were having dinner, Mattie was visited by JJ, our resident Jack Russell Terrier. JJ brought Mattie a ball to play with, yet Mattie was edgy and wasn't sure he wanted any visitors.

After dinner, Mattie wanted to ride on Speedy Red. So Mattie and I spent about 45 minutes riding around, with two IV pumps attached to the back of the car! Have IV pumps will travel! While we were driving around together, Mattie and I had many tender conversations and, many times he paused from driving, to look into my eyes and give me a hug. I haven't told my readers this before, but Mattie and I have cute names for each other. I call him my Mooshi Moo Moo, and I am his Una Moon. Don't ask how we came up with these pet names, but tonight, Mattie asked me whether I would always love Mooshi Moo Moo. Maybe it is me, but his questions just seem simple and yet profound.

As we head into Tuesday, I asked Mattie what he would like to do. I gave him some suggestions, all involving leaving our home. Mattie has made it clear that he doesn't want to leave the house. This saddens me, and I would like to hear more about the feeling behind this demand, but for tonight, I just let that go. I let it go, because he is already anxious and clingy. Peter's mom will be with us tomorrow, and my parents are flying in from Los Angeles tomorrow evening. I am happy Mattie can be surrounded by family, but it is very clear, that Peter and I can't stray far from him as he experiences the toughest and most courageous battle toward the end.

I would like to end tonight's posting with three messages and then a music video. The first message is from my friend, Charlie. Charlie wrote, "I am not sure what Mattie's mission is but he certainly has touched me and so many others and made us far more appreciative of what we have and sensitive to those who suffer. He's also strengthened my belief that relationships are what count, they are what make us "wealthy" and that all the money in the world leaves one in poverty if you have no one to love and share with.I am grateful that Kathleen was "on point" on Sunday and was able to foresee the issue with the pump and the central line before it happened. That was great and indicative of the level of caring and concern you've seen all along from the HEM/ONC nurses. I know you are relieved to be home with Mattie and I just hope the pain subsides and he is able to relax and perhaps even eat something soon. I do agree with you about continuing the PT for as long as Mattie can do it; young bodies were made to move and if he doesn't get any exercise he will have even more difficulty relaxing to sleep or rest. There is a growing movement to do a daily prayer at 7PM; I hope you feel the warmth of our loving thoughts surround you and your family each night. I will continue to pray for pain free days for Mattie and strength for you and Peter."

The second message is from a close family friend. Kathleen wrote, "Your fellow RCC Mom said it well, but I saw what you wrote about needing our prayers more than ever, I am here, and I am praying, and asking others as well. you both could probably benefit to be taken care of yourselves for a month or more. I wish I could help, I pray for a miracle. You have more strength, courage and determination in you than anyone I have ever known. Maybe you were supposed to be a Nurse, well I guess all Mothers are aren't they, but you are showing so many people how to be strong, I wonder if you realize how you are affecting others. How Mattie, all of you are affecting so many. I want to say so many things, but they cant come out as they are attached to my heart, where I am keeping all of you in prayer and in God's light."

The final message is from my mom. My mom wrote, "I've thought about the question posed at the special prayer service for Mattie's helpers this week. What is Mattie's legacy? It is a complicated question because it can be addressed in many ways. My first impulsive response is to think of an ellipse which requires two focal points to generate its' beautiful curvaceous shape and to keep one's position on its elegant surface. All who knew and read Mattie's personal struggle against cancer were forever caught up in the path created by its two focal points: 1. Mattie, and 2. Vicki and Peter. All who have been touched by their combined focal power have been transfixed by the unfolding of Mattie's story of courage, sensitivity and maturity and have been compelled to do their part in keeping the dream alive in spite of the odds. The medical drama that placed them at the center of the action attached itself to our hearts by their aura of love, commitment, trust and compassion that they demonstrated for each other even in the most challenging of circumstances. As in all human understanding, we have transferred their example to our own lives in the process, allowing us to remain firmly on that beautiful ellipse created for us by the powerful focal points of Mattie and Vicki and Peter who together produced a series of higher ideals for us to live by through their actions over the last year. God Bless Mattie, See you tomorrow."

As many of you know, there have been times throughout the year where I have posted music videos on the blog to capture the feelings and emotions running through my mind. The pending loss of Mattie is enormously overwhelming for both Peter and myself, and when I reflect on this, Kenny Chesney's song entitled, "There Goes My Life" came to mind. Yes the context of the song is quite different from the life altering world I live in, though the words in the song ring true...."There goes my life, my future, my everything!"

http://www.youtube.com/watch?v=9MIJShOqh8Q

Sunday, August 16, 2009

Sunday, August 16, 2009

Quote of the day: “Love knows no limit to its endurance, no end to its trust, no fading of its hope; it can outlast anything. Love still stands when all else has fallen.” ~ (I Corinthians 13:7-8)

Mattie was up several times on Saturday night, and the IV pump felt like it was beeping every two hours. So needless to say, peaceful sleep did not happen for us, though at this point, Peter and I both could be enrolled in a sleep deprivation study. It seems to me you couldn't ethically ask someone to be this sleep deprived, so from my vantage point we are a sleep researchers dream come true. My sister in law, Lisa, asked me today whether there have been sleep deprivation studies done on caregivers, and how the lack of sleep impacts their physical and mental health. I can't speak to the most current research out there, but from my previous work, there is nothing out there to answer such a question! But I think Lisa is onto something! When we got up this morning, we were on a mission. The mission was to get discharged from the hospital and be trained on how to use the PCA pump to administer IV morphine to Mattie at home.

Kathleen was Mattie's HEM/ONC nurse today. I know many of you may recall that Kathleen designed a clay tile for the art therapy exhibit at the hospital that reads, "I wish for a Mattie miracle." Kathleen loves monkeys and she calls Mattie her "little monkey boy." Recently in the blog you may have seen a picture of Mattie with Kathleen, holding a Curious George balloon. I think Kathleen could see that I was worn out today and wasn't thinking as clearly as I normally do. Kathleen mobilized forces to help Mattie get discharged smoothly and effectively. We did receive the PCA pain pump last night in the hospital, but when Kathleen heard how the morphine was only going to be administered through the pain pump, she grew concerned about the safety of Mattie's central line. Our in home pharmacy set up the pump so that morphine would go through Mattie's central line only once an hour, the rest of the time, the pump would be connected by tubing to his open central line, but no fluid would be flowing through it. Kathleen flagged this as a problem, because if you leave a central line open and unclamped for a period of time, it can clog up and not function. These central lines are vital for Mattie, since he receives all of his medication through them! Kathleen wanted to avoid the development of a clogged central line. So she took it upon herself to call the in home pharmacy company and brain stormed a more effective form of administration. What the pharmacy landed up doing to correct this problem, was to put the IV morphine in a large bag a fluid, so that the pain pump will work continuously 24 hours a day. This will enable two things to happen, 1) the pain medication will be administered at the correct dosage once an hour, and 2) by having a constant flow of fluid through the central line, it will remain open and usable. If fluids are not allowed to flow through the open lines, they will become clogged. If they are clogged they are not usable, which would be a major problem considering all the medications Mattie needs to receive through them. So Kathleen was clearly looking out for Mattie's best interest today and advocated for him with our in home pharmacy! Kathleen also helped me by creating a listing of ALL of Mattie's medications, by dosage, and when they are to be administered. Mattie is taking SO many medications, that Kathleen also listed for me which medications are compatible and can be administered together through the central line. Peter and I can't thank Kathleen enough today. She really helped to take out the additional stress I was having about all these medications, and her medication list is now in my purse and posted in our kitchen. In addition to Kathleen normalizing all of this for us today, she also ran around making sure Mattie was comfortable and pain free while in the hospital. As Peter said, "Kathleen is the epitome of the nursing profession." As a synopsis, here are all the medications Peter and I are balancing right now for Mattie. This list makes my head spin, it is extensive, and complicated. Or maybe it is the fact that I am thoroughly exhausted, and managing one more thing takes super human strength!

1) Vancomycin (a very powerful antibiotic): administered through Mattie's central line, twice a day for the next five days to combat his Staph infection.

2) Kytril (an anti-emetic): administered through Mattie's central line, every 12 hours.

3) Zofran (an anti-emetic): administered through Mattie's central line, every 8 hours.

4) TPN (nutrients): administered through Mattie's central line and runs 16 hours a day!

5) Valium (for anxiety): administered through Mattie's central line, every two hours. It isn't compatible with IV morphine, so it makes the administration process a little more cumbersome.
6) PCA pump (IV morphine): connected to Mattie's central line 24 hours a day!

7) Celexa (for depression): taken orally once a day

8) A laxative (because morphine produces constipation): once a day.

9) Fentanyl Transdermal Patch (for pain): changed every 72 hours.

What I want to impress upon you is a couple of things. First, Mattie is now hooked up to an IV 24 hours a day! This is a major adjustment for him and for us. At some points in the day, he is hooked up to two IVs at once (for TPN and for pain). Tonight Mattie got upset with the fact that he couldn't move around on the floor, without having to drag the backpacks filled with medicine. I am waiting for him to ask about these bags, but for now, he seems to accept them, mainly because one of them helps manage his pain. But I know more questions will arise soon! Second, and I know you know this, but Peter and I are wiped out. Being in this state of exhaustion, it is very hard to manage all this medication, because every medication has a specific time during the day when it must be administered.

This afternoon, while in the hospital, Mattie was visited by his Aunt Lisa, Uncle Chris (Peter's brother), and his cousins, Nat, Sydney, and Will. Mattie had a good time with them, and Mattie particularly liked the gifts they gave him. One was a car that he could take apart and put back together, and the other item he really liked was a three dimensional wooden helicopter puzzle. In fact, everyone worked on this helicopter today, and it was a good activity for Mattie, and helped him stay engaged with his cousins. I was fortunate that Nat and Sydney took some pictures for me today on my camera. I was just so tired, but I am happy they captured the afternoon.

Left: Mattie with his cousins. From left to right is Will, Nat, Mattie, and Sydney.

Right: Mattie with his Aunt Lisa.

Left: Mattie animated as he plays with the car that has removable pieces.

Right: The finished product! The kids, Chris, and Peter all worked on this puzzle!

Left: Mattie with Uncle Chris. When Mattie was going through chemo this year, he always said he looked like his Uncle Chris. But now that Mattie is growing his hair back, we did a side to side comparison today to see who now has more hair! You be the judge!

Mattie was discharged from the hospital after 4pm. When we got home, Mattie immediately wanted to ride Speedy Red! So I hopped on with him and even in today's amazing heat, we were zooming around. I am happy Peter captured this moment for us.

However, as the evening wore on, Mattie's anxiety level increased. In fact, he sat by my side on the couch and wouldn't let me go. It is also hard to eat around Mattie because the smell of food makes him nauseous, and yet he wouldn't allow me up to move away from him to eat. The other aspect of this which makes things impossible is that Mattie wants to eat. He says he feels hungry, but he just can't eat. He lands up crying about this and is SO upset. The intense crying, hearing your child in pain, and keeping up this pace are tortures beyond belief. Tonight Mattie was highly edgy, confrontational, and broke down into tears immediately. Needless to say this wears heavily on Peter and I. Our emotions are frayed and we don't have much more to give. Some days I ask myself, how can I go on? How can I wake up and deal with another day like this? Of course, the alternative is I have no caregiving responsibilities left because Mattie is dead. So neither scenario right now is acceptable. If exhaustion doesn't completely deplete me, then seeing Mattie suffer in pain with each passing day certainly will.

As we head into Monday, Mattie goes back to clinic for a blood test. However, he was supposed to have a physical therapy session in the afternoon, and I cancelled it. None of us are in any state for this. Perhaps will we go back to this on Tuesday. I could cancel PT altogether, but I want Mattie to feel like he is working toward something, as long as he has the physical strength to do this. Peter's mom came into town tonight, and will be with us for two days. So it is my hope that an extra pair of hands will help lighten the load. But I am also aware of the fact that Mattie is scared and clingy now, so I know our presence is crucial to stabilize his mood. We have needed your thoughts and prayers all year long, but it seems to me we need them now more than ever before. Seeing your child dying before your eyes takes a level of courage, love, and strength that is almost indescribable.

I end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am so sorry you had to go back the hospital on Saturday but you clearly made the right decision. I loved your comment that "Saturday was not the day we hoped for", what an understatement that is. It must have been frustrating, frightening, anxiety provoking and infuriating all rolled into one that you were unable to get the medication and relief for Mattie. I am grateful that it seems Mattie had a good, peaceful night on Saturday (and hopefully you did as well) in the hospital and that they were able to deal with his medical issues promptly. I am praying that you can solve the situation with Mattie's pain, anxiety and nausea so that you can return home for some family time. I will continue to pray and I am still getting emails from both the Dept of Defense transporters and the Lafayette Alumni group that they are praying daily for Mattie and for your family."

The second message is from a fellow RCC mom. Kathy wrote, "I've been reading your blog daily and have wanted to write for a very long time. I'm not very good at expressing myself so I put it off until now. I know that you've received many emails of late-words of encouragement from people who love and care about you all. We all feel so lost and don't know what to do with ourselves. We hope that your pain will be eased a little by some kind words -and by writing, it helps us to cope too. A few weeks ago I was working with a new , inexperienced nurse. She was crying because her critically ill patient was more than likely going to pass away on our shift. Being in charge on our floor, I spoke with her and gave her a big hug. I told her (as an old experienced nurse)that usually when our patients die, its their time. We've done everything that we can...all we can do now is make them comfortable and support them and their families as much as possible. Now this past week I read your news and realize that its easy for me to feel the way I feel about adults who have lived their lives-who are elderly or maybe have made poor choices. Its hard to say that we've done everything that we can for a sweet little seven year old boy. I'm around death and dying all the time. Sometimes I feel as if I've come to terms with it all...other times I wonder if I have a hardened ,unfeeling heart. Why am I so excepting of it? I know that its a whole different ball game when it involves people that you care about. It just doesn't seem right or fair. People often wonder how I can do the job that I do...it must be so hard. Hard is what you're doing every minute of every day. My job is a daily reminder to cherish the ones you love. I tell (and show) my husband and kids that I love them all the time. Your blog, your life- is a daily reminder too. I thought of you and Mattie the other day when I was holding Seamus' hand. You had recently wrote about how you and Mattie had held hands and how much it meant to you. Know that you are touching so many people. I pray that you get Mattie's pain under control soon and that you can get him back home asap. There is nothing worse that watching people suffer. You feel so helpless. I can't imagine it being your child. You guys are awesome parents...and have done an outstanding job advocating for Mattie and meeting all of his needs. I pray that Mattie is pain free soon and that you will have enjoyable, peaceful days ahead. God Bless you all Vicki."