Friday, September 11, 2009

Friday, September 11, 2009

Mattie loved going to fall festivals and pumpkin picking. I can remember this day and taking this picture like it were yesterday.

Poem of the day (Thank you Kristi, my Nevada Osteo mom friend!):

Ask My Mom How She Is
My Mom, she tells a lot of lies,
She never did before
But from now until she dies,
She'll tell a whole lot more.
Ask my Mom how she is
And because she can't explain,

She will tell a little lie because she can't describe the pain.
Ask my Mom how she is,
She'll say"I'm alright.
"If that's the truth,
then tell me,why does she cry each night?
Ask my Mom how she is
She seems to cope so well,
She didn't have a choice you see,
Nor the strength to yell.
Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For God's sake Mom,
just tell the truth,
Just say your heart is broken
She'll love me all her life
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.
I am here in Heaven
I cannot hug from here.
If she lies to you don't listen
Hug her and hold her near.
On the day we meet again,
We'll smile and I'll be bold.
I'll say, "You're lucky to get in here, Mom,
With all the lies you told!"


As our Nation pauses today to acknowledge the tragedy that occurred on September 11, 2001, I find that great sadness fills my mind and heart. On September 11, 2001, I was two months pregnant with Mattie. It was a day that frightened me because it directly illustrated to me that there are evil forces alive and well in our world, and though we usually live with a false sense of security, we should not take those freedoms for granted. Now eight years later to the day, I no longer have Mattie by my side. Something I would never have imagined would happen, and to add insult to injury Mattie was cremated today. So September 11, now has various connotations for me, a day of sadness and loss for our Country but also a great personal loss to my family. We went to the funeral home today and met with Mark, our representative. He showed us Mattie's obituary proof for the Washington Post and he also gave us a box filled with all of Mattie's metal parts that remained after the cremation. These parts included the prostheses from Dr. Bob's limb salvaging surgeries as well as the wires that were placed in Mattie's chest during Dr. Chahine's sternotomy. Peter took all these parts out to examine them, and I quickly felt deep sadness come over me because this is all of the physical remains I have left of Mattie. These parts remind me of the great physical suffering Mattie endured this year. Mark told us that he personally drove Mattie's body to the crematorium in Virginia (the District of Columbia has NO crematorium facilities), and then told the person performing the task that Mattie was his "friend" and that he should be treated with kindness and respect. I was very touched to hear Mark say this, and I am beginning to see that a child's death stirs up feelings in almost everyone I meet. I asked Mark today how often his funeral home handles the death of a child. He said that the home performs one to two services a month for infants (infants who die in birth), but that a case like Mattie's is rare.



Mark also gave us copies of Mattie's death certificate today. On the certificate it says the cause of death is "Natural causes." I immediately questioned that, because to me NOTHING was natural about this. Cancer took Mattie away from me, and therefore, cancer is the culprit.



This morning, Peter, my parents, and I drove to the Visitation Preparatory School and met Olivia. Olivia is a SSSAS mom, and sits on the board at Visitation. The school is only about two blocks away from the Holy Trinity church and is the site that our reception following the funeral will be hosted. Olivia was kind enough to walk us through the site, explained to us the meaningful history of the beautiful campus, and discussed different ways to configure and set up the rooms for the reception. One thing rings true to me, Mattie connected me to people and his communities in profound ways. I am SO grateful that Olivia wants to help us, that Ann and Alison steadfastly remain in their roles, and that we have the support of both RCC and SSSAS families as we move forward and plan these events.



It is our intention to have two different ceremonies to acknowledge Mattie's incredible life and spirit. One will be a Catholic mass and reception, and the other a Celebration of Life ceremony. The Celebration of Life event is intended to be more active and lively in which the opportunity to share Mattieisms, reflections on Mattie's life, and Mattie stories will be possible. We are fully aware of the sorrow and the pain caused by Mattie's death on our entire community, and though we want to acknowledge this and try to come to peace with this (if that is even possible!), we also feel it is vital to provide the setting for all of us to share in what made Mattie so special. Peter always said that "once Mattie hooks you, you are hooked, and it is only a matter of time until you love him."

My parents, Peter, and I went out to lunch together today. We talked about funeral readings, music, and a whole bunch of other subjects. My mom and I reflected on the incredible suffering that Mattie endured this year. Please remember that Mattie started taking oral Morphine back in July 2008, because the pain from his tumors was so intense. Peter and I saw Mattie live through the nausea, fatigue, and neutropenia associated with chemotherapy, the INTENSE pain from limb salvaging surgery (of which I have gained great respect for this procedure, and really believe from witnessing the pain, that there is nothing else comparable to it!), pain from his sternotomy, and let's not forget the pain associated with trying to move his body and learn to use his arms and legs again. In a snapshot, Mattie lived a great deal of this past year in pain, and if it weren't for his friends, the amazing HEM/ONC and PICU nurses, the HEM/ONC doctors, and special people like Ann, Alison, Linda, Jenny, Jessie, Jey, Debbi, Brandon, Jocelyn, Bob W., Mary R., and his childlife interns, he would have had a torturous year in which I would be wondering whether this was all worth it. Was it worth it? MOST DEFINITELY! We had to live our lives this year with the thought that Mattie was going to beat the odds, that someone has to survive multifocal osteosarcoma, so why not Mattie? In addition, through Mattie, my eyes were opened to the true compassion and love that are within people. Through Mattie's suffering, he gave us many gifts. The gift of his love, his AMAZING and non-stop trust in us, and his passion for life. Mattie's life was a gift, and if we allowed this gift to be present on this earth 13 extra months, then to me we did the RIGHT thing.

On our way home today, we noticed that a local school was letting out for the day. We saw kids streaming out of the building and into the streets. All of us had the same reaction, that we will never see Mattie doing this ever again. That he will not be able to grow up, that we will not be able to share in his life, and that at the core, our lives are isolated and without purpose. Amazing what you can think of just by seeing children exit a school building.

We said good-bye to my parents tonight as they are headed back to Los Angeles tomorrow, and they will return in a few weeks for the ceremonies. Their presence helped a great deal, and eased the loneliness we feel. On Saturday, Peter's brother is coming into town for the weekend to spend time with Peter. To get ready for Chris' arrival, I decided to change the sheets in Mattie's bedroom. I did not realize how challenging a task that was going to be. Needless to say I removed Mattie's sheets, but I refuse to wash them because they smell like Mattie. I cling right now to things that remind me of Mattie, and in fact when my mom talked with me about reorganize things, I had no response. How do I give away Mattie's toys and things? I have no idea! Maybe in time I will have the courage to do this, but right now, nothing is MOVING! Right now it takes every ounce of energy I have to get up in the morning and get dressed.

We would to thank Dawnee today for a lovely lunch, which we will enjoy tomorrow, and we would like to thank Tamra for a very generous dinner. We thank both families for their constant love and support!

I would like to share five messages with you today and a song that means a lot to Mattie and I. The first message if from Jey, Mattie's "big brother" and favorite CT tech. Jey wrote, "I want to apologize for not writing sooner but I haven't been able to get my mind around the reality that my little brother is no longer, in fact as I write this I am in tears It hurts and I am so deeply sorry for the heartache that you have been forced to deal with. I pray that you find a sense of peace and comfort in knowing that Mattie is watching over the family and helping to guide the steps that we take in life from this day forward. I cannot imagine how it has been for you guys living without Mattie being in your physical presence but I do have an idea only because of who I became to the family. Mattie has changed my outlook on how children should be treated who have been forced to deal with this HORRIBLE DISEASE. It should be a written law that we who are in the health care field should do everything we can to make sure that they have no suffering and that the family be taken care of and not have to do anything as they face this ordeal. I truly hope and pray that in the days to come that both you and Peter are able to continue to grow with each other, comfort each other, and know that Mattie was given the best parents a child could have asked for and considering he liked to design everything he could imagine not even he could have designed better parents. I LOVE YOU GUYS and If I can do anything to make things a little easier in days to come just let me know and I will see what I can do. Mattie is forever my little brother as you are forever my friends."

The second message is from Linda, our angel of caring and Mattie's childlife specialist. Linda wrote, "Vicki and Peter, you are the most amazing set of parents I know and are inspirational to the staff here. Mattie loved and trusted you and Peter; the way the both of you treated him with respect and love and compassion was selfless and overflowing. The staff had a little time this morning to connect together, cry, share all of the wonderful things that Mattie, you and Peter have shown us and taught us. So many tender and precious things were said; the light that Mattie carries will always shine here at Georgetown. Everyone that Mattie has touched will never be the same and I truly believe he has changed the nurses, doctors, techs and myself to want to be better clinicians and people."



The third message is from Debbi, our Sedation nurse angel. Debbi wrote, "Vicki and Peter, I can't get you and Mattie out of my head and heart today. The deep ache I feel in my heart just reminds me how exponentially more it is for you. I must thank you for letting me into your lives and sharing with me the joy that was Mattie. If I helped you get through this torture in any small way, I am grateful. The time at his bedside yesterday and today showed me even more the bonds of love and trust between you all; bonds that will never be broken. You as parents shouldered the pain and did everything to ease your child's passage.
I have been thinking about a quote from the book "Little Women" this evening. When the daughter in the story died, the family looked upon their child's
" face upon the pillow, a face so full of painless peace that those who loved it best smiled through their tears, and thanked God that Beth was well at last."
This was Mattie's face today. As hard as this day was, to see the peace in his face after death was an affirmation to me that all you did was right and true for him. Please know that my thoughts and love are with you."



The fourth message is from one of Mattie's outstanding HEM/ONC nurses. Miki wrote, "I know that whatever I say, whatever I do, can not fill your loss. I really wish I could come up with some magic words that can make you feel better right away... But you've got hundreds of people who love you, care about you and think of you all the time... and I am one of them. You are not alone... Thinking of you..."



The final message is from Meg. One of Mattie's favorite childlife interns and physical therapy racing buddy. Meg wrote, "Vicki and Peter, I am at an absolute loss of words for your loss. Words cannot begin to express my deepest sympathy. I have spent all day thinking about Mattie and how much he loved you both. I am so grateful to have met your son and have so many wonderful, funny and fond memories of Mattie. Mattie will be a constant reminder of true love and happiness for me. I don't think I have ever been happier than I was when I was able to make him smile. OH that smile. It could make everything problem disappear. I know there isn't anything I can say to make this better for you. Just know that I love your family and the both of you mean the world to me. I wanted to end this email with some song lyrics that will always make me think of Mattie and his strong, beautiful spirit."
Ive been cheated by you since I don't know when
So I made up my mind, it must come to an end
Look at me now, will I ever learn?
I don't know how but I suddenly lose control
There's a fire within my soul
Just one look and I can hear a bell ring
One more look and I forget everything,
o-o-o-ohMamma mia,
here I go again My my,
how can I resist you?
Mamma mia, does it show again?
My my, just how much Ive missed you
Yes, Ive been brokenhearted
Blue since the day we parted
Why, why did I ever let you go?
Mamma mia, now I really know,
My my, I could never let you go.
Ive been angry and sad about the things that you do
I cant count all the times that Ive told you were through
And when you go, when you slam the door
I think you know that you wont be away too long
You know that I'm not that strong.
Just one look and I can hear a bell ring
One more look and I forget everything,
o-o-o-oh Mamma mia, here I go again
My my, how can I resist you?
Mamma mia, does it show again?
My my, just how much Ive missed you
Yes, Ive been brokenhearted
Blue since the day we parted
Why, why did I ever let you go?
Mamma mia, even if I say
Bye bye, leave me now or never
Mamma mia, its a game we play
Bye bye doesn't mean forever
Mamma mia, here I go again
My my, how can I resist you?
Mamma mia, does it show again?
My my, just how much Ive missed you
Yes, Ive been brokenhearted
Blue since the day we parted
Why, why did I ever let you go
Mamma mia, now I really know
My my, I could never let you go


I end tonight's posting with a song called "Baby Mine" and it is featured in the Disney movie, Dumbo. Mattie and I loved this tender scene in the movie between Mrs. Jumbo (the mother elephant) and her son, Dumbo. In fact, when Mattie was a baby I would hum this song to him as a lullaby.

http://www.youtube.com/watch?v=2oSdgIDyl6Q&feature=related

Thursday, September 10, 2009

Thursday, September 10, 2009

Have you seen a cuter Pooh? Mattie at age two, dressed in his Halloween costume.

Poem of the day (thanks Jennifer G.): A Grandmother's Requiem ~ Rietta Bennett

We decided early on dear (Mattie),
that you were a gift of God.
A gift that brought patience
as we waited for the time of your birth.
A gift that made us remember
we are all a work in progress.
A gift that reminded us to pray
as all things are possible with God.
A gift that instilled courage
so that we could be an example of faith.
A gift that taught us to mourn
and know that we are blessed and comforted.
A gift that brought us together
to form tight, unbreakable bonds.
As you rest now in your new, perfect body,
intercede for us. Pray that we remain faithful.
Our life journey is difficult,
but we have the promise of eternal life.
So remember us,
until we meet again.




Peter and I go to bed and wake up with the same question on our minds.... how do we live our lives without Mattie? We really have no answers for this question, but one thing I know for sure is that I am in shock over Mattie's loss. I have moments when I cry and break down, but still operate in a very numb state, in which I am moving around and accomplishing things, but just feel lost and empty inside most of the day. Our life has gone from caring for a child, having a house filled with toys and childhood laughter and energy, to now a quiet existence where the only things we have to worry about is each other. It feels like we are returning back in time to when Peter and I were first married, however, the only difference is we have the memory of Mattie flooding our minds and our hearts, and we so long for the important missing piece in our family.

Peter, myself, and my parents headed to the funeral home today to sign paper work for Mattie's cremation, to look at urns, and discuss other ways to memorialize Mattie. Mattie's body was transferred from Georgetown Hospital yesterday to the funeral home yesterday, and Peter was asked to identify the body to confirm that it was indeed Mattie. This was NOT a task I joined him on. When Peter came back from the funeral home's morgue, he was very upset. Understandably! However, Peter did tell me that Mattie actually looked very good, and very much at peace. I guess we are putting our own hopes and desires into the interpretation of Mattie's last facial expression. I truly miss Mattie, but after the past several weeks of watching Mattie suffering in pain and slowly slipping away in front of me, I couldn't see him going on like this any longer. In fact when you lose someone in your life in such a traumatic fashion in makes the grieving process even more complicated.

I had the opportunity to look at cremation urns and other boxes that are used to store ashes. In fact there was a whole room of products to look at. However, here is the conclusion I came to! I don't like anything I saw. I find the whole thing depressing and nothing seems appropriate to carry Mattie in. What this tells me on a very cognitive level is that I am not ready to accept any of this, and frankly I am not sure when I will be. Mattie's body is getting cremated tomorrow, and I know that I will need to figure this all out soon. We talked to Mark, our funeral home representative, about the church ceremony as well. He was telling me that you can have a hearse and pall bearers even with a cremation, and he showed me the device used to carry the urn through the church. The whole thing made me very uncomfortable, and I keep reflecting on Peter's comments. Peter wants to memorialize Mattie and acknowledge his death, but he also wants people to leave the church appreciating Mattie for who he was, the bright, humorous, spirited, and creative kid that he was. Frankly seeing a hearse and pall bearers don't seem to capture Mattie's spirit for me, they just signify his finality and his death. The death of his spirit. So my gut feeling is that I will not elect to do the typical rituals and actions performed at a Catholic funeral.

After this taxing meeting, my parents took Peter and I out to lunch. We went to a restaurant that Mattie happened to love going to, and it was a strange experience going there without Mattie. In fact, what I figured out today is there is NO where you could put me where I wouldn't be thinking of Mattie. Everything I see and hear reminds me of him. I saw an oak tree today with acorns, and I immediately thought of Mattie. He loved collecting acorns and sorting them by ones with caps and those without them. I am happy that my parents are here with Peter and I, because they have helped us get out of the house, deal with some difficult tasks, and just be supportive through our very longs days. During lunch, I read my parents some of the beautiful e-mails we have been receiving, and in fact tonight, I will begin posting some of them.

After lunch, Peter drove us to see two churches in the District of Columbia. The first church is Holy Trinity. Holy Trinity is a Catholic church near Georgetown University's campus. Mattie was scheduled to attend this school on Sundays for Catholic education, but due to cancer, he was unable to experience this church's community. None the less, Rev. Jim Greenfield, our priest, has privileges at this church, and therefore we would like to have Mattie's funeral there. I was unable to get into the church today to see what it looked like because it was locked, but I was determined to find a way. I saw that children were playing in the church's school playground. So I went up to the teachers and asked them how I would get into the church because I was planning a funeral for my son. The teacher was mortified by what I told her and couldn't do enough to help me. She escorted me to the church administrative office, and as I kept telling Mattie's story, I found more and more people at the church felt compelled to help me. I took that as a good sign, and the right church to have Mattie's funeral in. Holy Trinity is an old church, but very simple with a federalist design. It is bright and open. We also went to visit St. Matthew's. St. Matthew's is a cathedral in DC, and it is quite elaborate and beautiful. When I walked into the St. Matthew's today (which I was familiar with), I immediately said "NO." The church has dark colors in it, and speaks solemn as soon as you enter the doors. So I have come to peace with having Mattie's funeral at Holy Trinity.

After our church trips we then drove to Arlington National Cemetery. My father's brother, who was an honor guard, is buried there. While visiting my uncle, we all landed up talking to his grave site and asking him if he was watching over Mattie up there. I so hope that Mattie is at peace, that he isn't alone, that someone is taking care of him, and that he is happy. These are my fears and worries, and because life isn't turning out how I hoped or planned, I also find that I land up questioning other things, like is there life after death? Everything I once accepted and believed in whole heartily, I now challenge.

When we arrived home, I sat down at the computer to try to write Mattie's obituary. I assure you, I don't wish this on any of you. It is a surreal experience to be doing any of this. I am not one of these people who reads many obituaries at all. So today I actually had to pull out the Washington Post and read several of them to get the gist of what content goes into them. The obituary should be published in this Sunday's Washington Post, so you can let me know how I did.

We want to thank the Doane family for the delicious chocolate cake and Earl Grey tea that you delivered to our home today. Mary I love the roses as well! Thanks for supporting us through our difficult days. We also want to thank Beth E. for a wonderful home cooked dinner and the wonderful berries you gave us for dessert. It was wonderful to see the card you attached to the dinner from many of our Andersen friends!

I would like to share four e-mails I received from many of supporters at the Georgetown University Hospital. The first message is from Dr. Snyder, Mattie's oncologist. Dr. Snyder wrote, "Dear Vicki and Peter, I have always known I wanted to be a pediatric oncologist. I became certain, and made life decisions based on that certainty, starting my sophomore year of college. I started working as a camp counselor at a camp for children with cancer for several summers during college; seeing the healthiest of these sick children. Working my way to the outpatient clinic as a medical student, and finally as a resident caring for children on the inpatient units. I told myself, if a patient dies and I can ‘handle’ it…I will be able to do this. I felt such a strong calling and still do. And I have had patients die; each different, each tragic, each unfair. They flood my memory now, one after another, their stories always sweet and always too short. Two of them, for certain, brought Patrick and I together. We have always thought of them as angels. I asked them on Tuesday to find Mattie and to take care of him. I know they will. Today, though, the emptiness I feel is profound. Today, I must confess, I am a mess. My heart aches for your loss, for my loss, for Linda and Debbi and Kathleen and Katie and Jenny and Jessie, Jey, Ann’s loss. Our collective loss is a vast chasm. But our collective love for Mattie and for you is enough to fill that chasm, to overflow that chasm, to spill into rivers of goodness, to irrigate fields empty of purpose and the harvest of this devotion we have for Mattie and for you will bring forth something so immense and wonderful beyond which we can imagine. This will happen. Of this too, I am certain. It will be one of Mattie’s greatest creations.
Thinking of you, All my love."

The second message is from one of Mattie's favorite PICU nurses. You may recall that Brenna was the nurse who designed the Sponge Bob breathing exercise while Mattie was recovering from his sternotomy. Brenna wrote, "Dear Vicki and Peter, There's so much that's been running through my head, and heart, today since the news of Mattie's passing. I truly can't imagine your heartache today, especially after a year of constant battle. But I do know that your family has profoundly affected all of us who've cared for Mattie this year. I remember the first time that I met the three of you; I was struck by the level of connection and commitment to each other. That you three were truly a team in Mattie's fight and a real force to be reckoned with. Mattie had so much trust in the two of you and knew that when YOU said that he needed to do or go through something unpleasant, that it really was what was in his best interest. And you reciprocated that trust in him and he was empowered by it. He knew that you would listen and be his voice to the new world of medicine that you'd all been thrust into. Getting to know your family throughout the past year has been a real privilege. I can honestly say that so far in my career, I've never met a pair of parents who took on their child's battle with the same level of commitment and determination. You are such incredible advocates and were able to truly contribute to his treatment and care. As a PICU nurse, I've witnessed the suffering of many children, and while I know that there are many, many healthy children in the world, it makes me more and more unsure of God's plan for Devin and I as we start to think about adding a child to our life. Did I subconsciously choose this path to prepare me for something bigger? We often have discussions, induced by situations I see at work, about how we would handle having a child with special needs or longterm illness. I feel that these children are sent by God to teach and inspire us all to do better, to be better. But not all of them are blessed enough to have parents with the ability to selflessly advocate the way that you, Vicki and Peter, were able to do for Mattie. Words can't describe how lucky Mattie was to have you as his parents. Mattie's courage inspired me, and yours has been equally inspirational. I don't know what God has in store for us, but I can only hope to face whatever's ahead with the same commitment to each other and our children. I hope that you know how much we will miss having your family's presence in the PICU. I know its an odd, and sort of backwards, statement, but seeing your faces always brought me hope. And, absolutely, I will miss Mattie. Even though I only cared for him a handful of times, I truly enjoyed it. Mattie made me think outside the box and be creative. He reminded why I went into pediatrics in the first place. He was so kind, so intelligent, and so, so funny. His sense of humor was beyond his seven years. "Mom, tell the sto-wey... Listen to my mutha, save all questions for the end. Lastly, I have to thank you, Vicki, for the blog. Even though reading it nightly has certainly 'brought work home' more than usual, your daily entries have opened my eyes to patient/family side of the ins and outs of dealing with a child's illness and the healthcare system. It has certainly effected my practice, the way I think about and support my patient's family and how I interact with them. I have no doubt that you will honor Mattie in great ways; I wouldn't expect anything less from the two of you! I know that he is proud of you and your strength. His spirit will guide you in using his legacy to help other children with osteosarcoma. As always, you are in my thoughts and prayers."


The third message is from one of our amazing HEM/ONC nurses. Tricia is a wonderful nurse, advocate, and has supported Peter and I in ways that are indescribable. You should also know that Mattie began his chemo in room 10 and also died in room 10. Tricia was with us on both occasions. Tricia wrote, "Vicki & Peter, I just wanted to let you guys know I am sending my thoughts & prayers for both of you during what undoubtedly is the most difficult time in your lives. I am so deeply saddened by Mattie's loss, but at the same time I am at peace now that his suffering has ended. I am praying that you will find strength to move forward with your lives and that somehow in the the future you will both share in finding the peace & happiness that you were robbed of over these past 13 months. You sincerely are two of the most amazing people I have had the honor of knowing, and it has been a privilege to provide care and support to all of you throughout this journey. Please take care of yourselves, and know that your handsome angel was destined to fulfill different plans from those we wished for him and for the rest of our days here on earth he will live on in the legacy that he has left behind. So many people have been impacted by Mattie's life, and I for one will always cherish the times I cared for your precious little boy. My entire family shares in your sadness, and we all send loving prayers to you both."



The final message is from Anna, Mattie's physical therapist. I told Anna that if anyone could have gotten Mattie to walk, it would have been her! Anna wrote, "Dearest Vicki and Peter, My heart aches for you. I am so sorry that our Mattie has passed away. I would also like to apologize for not e-mailing you yesterday. I needed to sit with my emotions. I cannot tell you how glad I am that I was able to say goodbye to Mattie at the hospital yesterday. Doing so brought a peace to my soul that has not rested softly since Mattie’s relapse. Being able to embrace you and Peter with all the strength I could muster only begins to scratch the surface of what I wish I could do for you right now. Mattie is an angel etched in my memory for eternity. As I lay in bed last night, unable to sleep, I was flooded with memory after memory of precious moments with you and Mattie. I am so honored to have been able to fight with Mattie over the past year. Vicki and Peter, I thank you both for letting me into your lives and for teaching me so much about love, strength, courage, and hope. Vicki you mentioned that for the moment the memories of hospital sounds and Mattie’s lasts breaths are all you can remember. Let me help you and Peter along your path to some other memories….Do your remember the squirt fish???? We practically had a full on water fight right in the hospital!!! I had to cover myself in towels to keep my clothes dry. Do you remember Linda coming out into the hall with a bucket on her head ready to joint the squirt fight?! How about the time we blew up as many balloons as possible, only to let them go flying through the air in the hospital hall. Mattie loved watching the musical balloon medley. He had a way of identifying the most beautiful moment and breathing it in. I could see the artistic twinkle in his eye when our activity had culminated to perfection. It was almost as if he was the conductor of a symphony and he had reached the point where he could just sit back and enjoy the musical bliss. I loved that immensely about Mattie. He had such depth. Oh Peter and Vicki, I will continue to share each and every memory I have of Mattie with you. I just wish I could do more. Just know that you have a HUGE support network and you just have to say the word and we’ll do anything you need. I cannot begin to imagine how you must feel right now but, my heart is with you. You may already know the saying “It’s not the years in your life that count. It’s the LIFE in your years.” Mattie had so much LIFE in him!!!! And it is that SPIRIT that surrounds us and will continue to surround us each day. It is contagious and I know that anyone who knew Mattie knows exactly what I mean. I could still see it in his face when I said goodbye yesterday. That’s our Mattie!"

Lastly, tonight we received an e-mail from Guillermo. Guillermo works for Voxiva (Peter's company) in Peru. Guillermo wrote us a beautiful e-mail which stated,
"We thought on how to express our feelings about Mattie and you, so we decided to re-record our Mattie’s song: “My Little Child” for you. We’ll miss him, but what Mattie created in all of our hearts is his best legacy. He seeded values as friendship and solidarity among all the people that followed his incredible fight. Let’s preserve those seeds and let’s use them with other children that may need support and don’t have the luck to have you as parents." Guillermo, Family and Apple Band Friends


I will try to find a way to attach a link to this beautiful song, but in the mean time, here are the touching lyrics.

My Little Child
To our friend Mattie

(verse)
When we tucked him in at night
kissed his cheeks and dimmed the lights
we could see the peace reflected in his eyes
Then we learned the awful news
he'd face a thing he didn't choose
and we wondered what was right and what to do

(prechorus)
What could we do? we'd see it through

(chorus)
My Little Child
we'll be fine just recalling his magical smile
My Little Child
we'll bring peace to his freedom
My Little Child

(verse)
So let's take from what we've learned
what we've learned from living in hell
it's the time to say it's over without regrets
We hold the future in our lives
let's be as brave as Mattie was
we may help so many children with all we've got

(bridge)
Maybe we are all sad
for the pain we feel today
but it's time to wipe out the tears
there's another way to have him here
raising flags of Mattie's will around
here, there and everywhere
It´s time to let him go
let's wave the flying dove

(chorus)
My Little Child
we'll be fine just recalling his magical smile
My Little Child
we'll bring peace to his freedom
My Little Child

Wednesday, September 9, 2009

Wednesday, September 9, 2009

Peter took this photo of Mattie about two weeks ago when Mattie was sleeping on our couch. It is one of my favorite photos of Mattie, and to me captures his angelic face. Hope you enjoy it too!

I would like to thank my former student, Betsy, for sending me this poem!

Poem from Nicholas Evans, The Smoke Jumper, titled "Walk Within You"

If I be the first of us to die,
Let grief not blacken long your sky.
Be bold yet modest in your grieving,
There is a change but not a leaving.
For just as death is part of life,
The dead live on forever in the living.
And all the gathered riches of our journey,
The moments shared, the mysteries explored,
The steady layering of intimacy stored,
The things that made us laugh or weep or sing,
The joy of sunlit snow or first unfurling of the spring,
The wordless language of look and touch,
The knowing,
Each giving and each taking,
These are not flowers that fade,
Nor trees that fall and crumble,
Nor are they stone,
For even stone cannot the wind and rain withstand,
And might mountain peaks in time reduce to sand.
What we were, we are
What we had, we have.
So when you walk the woods where once we walked together,
And scan in vain the dappled bank beside you for my shadow,
Or pause where we always did upon the hill to gaze across the land,
And spotting something, reach by habit for my hand,
And finding none, feel sorrow start to steal upon you,
Be still.
Close your eyes.
Breathe.
Listen for my footfall in your heart.
I am not gone, but merely walk within you.

As of today, I have to acknowledge the fact that the blog and the nature of the blog has profoundly changed. The blog was originally created to inform you about Mattie's day, his condition, and his treatment. However, over time the blog evolved and in a way gave birth to family story that captured the hearts, minds, and souls of a community. A community that I would be lost without, a community that wasn't afraid to walk through our painful days and NIGHTS, and a community that has shown me that with love and compassion wonderful things can happen even in crisis. Today is the first day I am writing, but I am not reporting about Mattie. I have no Mattie reactions, stories, or reflections of his day. This in and of itself is VERY upsetting, but I decided that I would continue the blog through Mattie's funeral, and then assess what I will do after that point. I have no idea what I will be writing about, or how I will be feeling as Mattie's death continues to hit me. However, in the mean time, I am honored that many of you want me to continue to write, and that you are willing to support us through our grieving process.

I had a very hard time going to sleep last night, and Peter had a hard time staying asleep. Our bodies have been profoundly changed from living in a PICU, but also living with a very sick child who was up every two hours at night. Though Peter and I went to bed at different times, one thing was consistent, we both woke up crying. We are surrounded by Mattie's things, and at times we almost have the sense that Mattie is with us. Peter and I are so USED to caring and meeting Mattie's needs 24/7, that is it VERY hard for us to now relax. We are that stressed out, and that type of intensity, doesn't go away with one night of sleep. We have many months of physical and emotional recovery ahead of us. I sat in Mattie's room this morning and just looked around and was flooded with all of his creations and toys. It is hard to believe that he is gone. I know he is gone, but I can't accept that he is gone.

Peter and my dad went to the Funeral Home today to make arrangements for Mattie. Peter and my dad left with a very positive impression of the person they worked with, and I will return with them tomorrow, to look at urns and to discuss lifegem (creating a diamond from Mattie's ashes), as well as memory glass (glass jewelry that incorporates Mattie's ashes into it). However, Peter and my dad told me that they saw many ways to display ashes, it doesn't have to be in an urn. It can be in a sun dial, a bird feeder, or a fountain for example. So as Mattie always taught me, I have to think outside the box (literally)! I am happy Peter had my dad's help and then they went out to lunch together.

As I was getting dressed today, I debated what necklace to wear. For the past 13 months I have been wearing Alison's Hope necklace. I clung to that necklace and it brought me strength and courage on some of my darkest days. Yet today I felt compelled to wear something that reminded me of Mattie. So I pulled out the necklace he made for me at the Lombardi Clinic. I featured a picture of it on the blog recently, it has different glass animal beads on it. Any case, wearing this necklace today reminded me of Mattie and the incredible love we have for each other. Mattie and I were clearly mother and son, but Mattie and I in a way had a deeper and more spiritual connection. We just understood each other, and with his death, I feel like a part of me has died with him. Mattie looked like me, acted like me, and we had similar personalities. So how is it possible to lose such a force and not be affected?

My mom and I went out to lunch today with my friends Ellen (Charlotte's mom) and Christine (Campbell's mom). I never thought I would be doing this after Mattie's death. Instead I pictured myself balled up in a corner or not leaving my bed. That could still happen, and I may have days like this ahead, but today, getting out of the house was necessary. Getting flooded at home with Mattie's memory can be overwhelming! At lunch we had moments of crying, moments of laughter, and moments of deep reflection. One thing we did all agree upon is the need to take more time to nurture our friendships. Mattie has taught us to appreciate life and our connections. Taking the time to see and share feelings with friends is one of life's greatest gifts, and I am happy that I stepped out of comfort zone and am beginning to allow my friends back in. I asked Ellen and Christine about how their children were reacting to Mattie's death. I was deeply touched to hear how upset and sad Charlotte and Campbell were to hear the news. I certainly do not want Mattie's friends to feel upset or uncertain about life or even worry this happening to them, but I am happy to see that Mattie's life touched them so much, that they cried and asked profound spiritual questions. For example, why did God allow Mattie to die? An excellent question asked by a seven year old, and one that even I as an adult continue to explore. I thought it was interesting that Campbell asked his mom if she knew how he felt. If she ever lost a close friend when she was seven. We talked about this at lunch, and all of us never lost a friend like this when we were growing up, so in all reality we do not know what is going on in the minds of Mattie's friends, but I am very happy that children are being given the opportunity to talk about Mattie's death and to ask questions. It is our responsibility as parents to be able to talk to our children about death, and when we do not talk about these sensitive topics, they unfortunately do not go away. Children have active minds and when we do not guide them, they will come up with explanations of death on their own, explanations that could be misleading. Thank you Ellen and Christine for a lovely lunch and for giving me two new green friends. The plants are beautiful! I haven't seen plants in my home for over a year, because plants have been replaced by LEGOS (actually plants can grow molds in their soil, which could be dangerous for chemotherapy patients, which is why all plants were removed last summer)! Reconnecting with friends made me feel less isolated, and Christine told me that we are friends regardless and Mattie's death will not change that. You couldn't have said anything better to me today, that was a gift!

One thing is for certain thought, I feel no regret about Mattie's treatment and care. Peter and I were there EVERY step of the way, took an active role in his treatment, never allowed him to be alone during any part of this process, and we were always open and honest with him during this fight. We are now worn out physically and mentally, but it was worth it, because if I had even one doubt about my actions, it would weigh heavily upon me. I have no regrets about our actions, and that alone is peaceful. The one thing I encourage you to do, because I CAN'T do it, is after you read this, stop and pause, find your children and hug them. Never take for granted the time you have with them. I realize life is busy, hectic, and you may feel you can catch up on things the next day. Maybe, but here is the key point. You have your child with you, and that in and of itself is a gift that you shouldn't lose perspective on.

We would like to thank the Ferris family for a wonderful dinner. Thank you for thinking of my parents as well. You have been so incredibly generous and kind to us this year, we truly value your support. I am still sifting through e-mails and filing all of them away because your words and thoughts mean a lot to me. Within the next day or so, I will start sharing these messages with you. I end tonight's posting with a song my friend Mary Ann sent me. It is a song about friends. Mattie was a true friend for Peter and I, one whose loss has left a major hole in our hearts and lives.


Friends sung by Michael W. Smith

http://www.youtube.com/watch?v=IbPKaIozS-c

Mattie Lost the Fight Today!

Tuesday, September 8, 2009 -- Good-bye dear Mattie! Our hearts ache for your loss!

Poem of the day (Thanks Margaret!):

Do not stand by my grave and weep
I am not there...I do not sleep.
I am a thousand winds that blow
I am a diamond glint on snow.
I am the sunlight on ripened grain
I am the gentle autumn rain.
When you awake in the morning hush
I am the swift uplifting rush
Of quiet birds in circling flight
I am the soft starshine at night.
Do not stand by my grave and cry
I am not there...I did not die.


I am mentally wiped out from today. I received over 150 e-mails, but I am unable to stay awake long enough to actually read them! So I look forward to reading them tomorrow. Mattie's blog was hit over 5000 times today, so I appreciate you visiting electronically Thanks Norma (one of our great sedation nurses) for the chocolate cake today. It is inspiring me to write the blog.

Mattie had a VERY harrowing night. From 2am on, Mattie was having trouble breathing, and appeared to be in intense pain. It was the most intense five hours of our lives, and the sights and sounds we observed during this time were horrific, ones I don't wish on anyone else. I can still see Mattie's sweet face writhing in pain, gasping for breath, and making a horrible congested sound, which if I don't ever hear this again in my lifetime, that would be too soon! Dr. Shad called this chest congestion, the "Death Rattle." That is an accurate description because when you hear it, you know death is pending. In all reality I found these five hours frightening, because we just did not know how the death process would unfold.

We were blessed to have Sarah Marshall, one of Mattie's outstanding HEM/ONC nurses, working with us last night. I now have four angels in my life: Ann (my angel of Hope), Linda, (my angel of caring), Debbi (my sedation nurse angel), and Sarah Marshall (my angel of mercy). Sarah Marshall was assigned to work with Mattie only last night. Typically a HEM/ONC nurse is assigned three patients during a given shift. Sarah Marshall was proactive and did everything that was humanly possible to make sure that Mattie was relatively pain free, which WASN'T easy. Mattie was on IV dilaudid, dilaudid boluses by hand, a Versed continuous drip, as well as boluses of Versed. In addition, Mattie was receiving albuterol through an inhaler, which helped to keep his airways open.

Peter and I spoke to Mattie throughout the night. We weren't sure exactly what to say, but we told him we loved him, were proud of him, and in essence he could die and we would be fine. We wanted him to know we understood he was in control over how the night played out.

By 6:15am, Mattie was receiving very high dosages of pain medicine, however his pain wasn't subsiding, and frankly we were getting concerned with how we could manage his very over taxed heart and body. Dr. Shad prescribed propofol at that point to put Mattie in a twilight sleep. But propofol is known to slow down the heart rate, and this assisted in giving Mattie relief and helped to stop prolong the agony! Mattie died within one hour of the propofol infusion. While Mattie was in pain, I could see he would try to sit up and talk with Peter and I. At one point, he mentioned to us that"he was going to die." So we concurred with him and this provided some leeway to talk about our fears and hopes for him. We told him we loved him and that it was okay to let go. Periodically Mattie would sit up and try to open his eyes, and one time he looked at me and said someone else was in the room with us, by the door. Well no one earthly was in the room with us, but we knew Mattie's death was near. Here is the thing though, seeing him suffer in pain, and listening to this "death rattle" for hours on end, made the option of death much more peaceful and appealing. My heart was aching over the pain Mattie was in. Dr. Shad assures me that Mattie was always comfortable, and the "death rattle" is much harder for the caregiver to listen to for hours.

As Dr. Shad said to me today, "Mattie fought death." Mattie just did not want to die. Dr. Shad feels that this was because he did not want to leave Peter and I behind. After all the three of us thought we would be together for always. Careful when you assume things!!! Dr. Shad told me that she has been an oncologist for 25 years and in all her career she has only had to use propofol on one other child patient! She said Mattie was her second, and Mattie needed it because he was resisting death. I actually found her statement very empowering, because if Mattie was willing to be that congested for such a significant period of time then he really must love us dearly.

Once on propofol, Mattie's body started to relax, and I decided to lie down next to him on his bed, as we were awaiting death. I wasn't sure what death was going to look like, but slowly one by one his respiratory rate went to zero, his pulse oximeter went to zero, and his heart rate also went to zero. Hearing all these values flat line was another sound I won't forget any time soon. But by that point Mattie was in my arms. The nurses and doctors gave us about an hour alone with Mattie after he died, to say good-bye. This was a very touching and tearful hour. How do you say good-bye to your child? Both Peter and I know on some level that Mattie has died today, but on the other hand, we are having intense trouble believing this. As Debbi said today, Mattie's face looked like he was smiling and in peace. Thank God because the five hour ordeal was something I am trying to forget.

Sharon, the Lombardi Clinic chaplain, was with us starting at 4am. She helped say a prayer before and after Mattie's death. Sharon did a wonderful job, and though I have my own issues I am working out with God, I saw the need for prayer and to ask God to spare Mattie more pain and suffering.

After we had some private time with Mattie, he was visited by over 20 Georgetown Hospital employees. Jenny, Jessie, and Linda bought four stepping stone kits and we all worked around Mattie and did a stone for each foot and each hand. This is something I always wanted to do, and I am happy to have these cherished gifts that will always remind me of Mattie. I appreciate Tricia, Debbi, and Katie's help, because as Peter and I were pushing Mattie's hands and feet into the cement like substance, they were cleaning the substance off of Mattie. It was an amazing experience that occurred today, because in Mattie's postage stamp sized room, many employees came by to share their fond stories of Mattie with us. It was touching to see and hear how much Mattie has touched people's lives. My parents were so happy to be able to meet in person many of the people I have been writing about on the blog. In addition, Brandon, Mattie's big buddy, also visited. I could tell that Brandon was very upset to lose Mattie, and I told Brandon that Mattie loved him and considered him a good friend.

Once all the visits were over, Peter and I had the last chance to say good-bye to Mattie before preparing him to go to the hospital morgue. Lovely, no?! Saying good-bye to that beautiful face, those cute cheeks and hands was down right impossible. There are times the true reality hits me and I don't know how we will go on. Literally!

Tricia, Debbi, and Katie then gave Mattie a bath, and as unpleasant as this sounds, they had to place Mattie's body in a body bag and transport it to another floor in the hospital. I removed myself from the room, because I did not want to see the body bag. My precious son landing up in a body bag was a little hard to take. I sat outside with Dr. Shad and Linda, and Peter remained to help with the process. Mattie's "big brother" Jey came up to see us and also stayed to help transport Mattie to the morgue. He said no one else could do it, it was his responsibility today, because he loves Mattie and wants to give him a safe drive on is final destination within the hospital.

Saying good-bye to Georgetown today made me sad. I know we are always invited to C52, but it isn't the same. The nurses were clearly affected by Mattie's death and in many ways I was surrounded by this amazing community that we have gotten to know over 13 months of hospitalization. Jey also told us a funny story. Jey could picture Mattie up in heaven and arguing with God about his wings. Jey said Mattie would WIN about how large they would be!

We arrived at the hospital last Thursday with three of us, but today we only came home with two. How I miss the noise, sights, and directions given by Mattie, instead what I have floating around in my head are the sounds of hospital monitors. When we arrived home, I saw Speedy Red and almost lost it. In all reality being around Mattie's things bring about great sadness.

Ann came over to visit us this afternoon and brought us lunch from the May family. Thank you Liza for wonderful homemade soup! We appreciate your support. We all had a wonderful conversation together, Ann, Peter, myself, and my parents. Conversation for Peter and I is a lost art form. Mattie has been preventing Peter and I from talking for months. I appreciated Ann's visit and her amazing commitment to help my entire family through this ordeal. Now that Peter and I have the freedom to eat and talk when we want to, we feel awkward about this. Our world revolved around Mattie, and now nothing makes sense to us. In a way having these freedoms make us feel guilty, because on some level this just reminds us that we are childless.

We would like to thank the Nashman family for a wonderful dinner! Thank you Honey for your continued and generous support! I would like to end tonight's posting with the song, "Accustomed to her face," featured in My Fair Lady. I have grown accustomed to Mattie's face, an ache when it is no longer with me. I sign off for the evening, because I can so tired, I can bearly put two words together.
http://www.youtube.com/watch?v=lBMjzMW0AfA

Monday, September 7, 2009

Monday, September 7, 2009

Tonight's Mattie creation features a lighthouse card that he made for me to celebrate my birthday! Mattie knows that I love lighthouses and that we visited many with him in his lifetime.

Quotes of the day: "A life lived with so much love never really ends but goes on forever in the hearts of those who remember. By love they are remembered and in memory, they live."

"Angels are like diamonds, They can't be made, you have to find them. Each one is unique." ~ Jaclyn Smith


"All God's angels come to us disguised." ~ James Russell Lowell



Our day started out with a sad scene. Mattie's fish, the special gift my parents got Mattie yesterday, died! I knew this was an omnious sign today!

Mattie had a very difficult start to the day. His blood pressure has been dropping and is dangerously low, and he had a coughing fit, which left him gagging and unable to catch his breath. He was deathly scared, and when Dr. Shad and Kathleen (Mattie's outstanding HEM/ONC nurse) saw him, they mobilized into action. In reality what happened next moved so fast, it was almost a blur. Mattie was in minutes being pumped up with pain medications and Versed (for anxiety). Now that I can reflect on the morning, I am so thankful we are in the hospital. Because Mattie couldn't possibly be cared for humanely at home based on the symptoms he is presenting. It is ironic that Mattie seemed to know this, and had a better feeling for his condition and his decline than Peter and I. Once Mattie received all this medication, he asked if I could snuggle with him, which I happily did. However, Mattie is being kept in a comfortable state, so therefore he really isn't talking and spends a lot of time sleeping. The Mattie we knew is NO longer!


Dr. Shad came to the hospital early because she felt that the end was near for Mattie. She stayed at the hospital all day, and we had a great deal of support from the HEM/ONC nurses (Kathleen, Tricia, and Miki). We were also surrounded by our THREE angels today: Ann (our angel of HOPE), Linda (childlife specialist and our angel of caring), and Debbi (our sedation nurse angel). They all came to support us and Mattie. My parents sat with us as well, and this whole scene of watching Mattie slowly dying is heart wrenching and at the same time surreal. How can my healthy, active, bright, and spunky son be dying? I see it happening, but it is SO hard to accept!

We want to thank Tamra and Liza for bringing us breakfast this morning. We so appreciate your families supporting us! We also want to thank the Fortune family for a nice lunch. Eating wasn't easy for me today, but I had a lot of people around making sure that I actually did. Ann took me outside to eat something, and I needed that break, because sitting and watching death, and the death of Mattie almost takes your breath away.

Peter and I spent a great deal of time today monitoring Mattie and also talking with him. In fact, when everyone was visiting, we had solemn moments, but also moments of laughter. Laughter because Mattie was a very humorous fellow! Kathleen told me that the nurses love Mattie, but they also love us. That Mattie has left a legacy, and his love will always live on within us. Mattie did not go to school this past year, but in a way he went through the hardest school of all. The school of cancer, which shows you the most vulnerable and raw sides of life. In fact, it has left me so raw, that I emotionally am not the same person anymore.

Mattie's nurses all came in tonight at their shift change to kiss and say good-bye to Mattie! It was very touching. Kathleen told me that even though Mattie isn't awake, he can hear us, and that he worries about us and is holding on because he knows we do not know how to say good-bye to him. So tonight, Peter and I mustered the energy to talk with Mattie together. We told him we loved him, were proud of him, that he did a great job fighting the cancer, but now he is in control and can decide when he has had enough and wants to rest. That we will be okay, and that we will always, always love him. We told him that we couldn't have asked for a better son, and that he was going to a place where he would be at peace, able to run and play, and meet up with family members and friends who love him but whom he has never met. My sign off tonight, as it always is to Mattie was, "Una Moon loves Mooshi Moo." Mattie coined the nickname, Una Moon for me, and he is my Mooshi Moo.

It is hard to say how long Mattie will be with us. It could be hours or days. But it is no longer weeks! His whole disease has been one crisis after another. His cancer required three major surgeries, 11 months of chemotherapy, and intensive physical therapy. However, there was NO break between treatment and recurrence. In addition, even death is not an easy process for Mattie. It has hit him hard and hasn't given us the chance to talk as a family. This year has left me shell shocked, questioning everything about life and the future, and the true purpose for our lives. Mattie is being kept comfortable, which is a blessing, because the sounds coming out of his body and lungs are frightening. I doubt we will sleep at all tonight! I am saddened that Mattie will be unable to go on a planned beach trip that the Lombardi Clinic arranged for us on September 13 through the Foundation, Believe in Tomorrow. It wasn't meant to be clearly. One thing I do know is I hate Osteosarcoma with every fiber of my being. I have seen Mattie suffer way too much this year, and this suffering will always remain a part of us.

We would like to thank Tamra for a wonderful home cooked dinner tonight. Tamra you are way too generous with us! Thank you for the hug and the support today. My head is pounding tonight, my heart is heavy, and I am truly and deeply saddened over the pending loss of Mattie. Ann, is headed back to spend time with us at the hospital this evening, and despite losing her brother to cancer almost two years ago, I appreciate and value her commitment, support, and love she has for us in order to be able to walk through this with us now. So I end tonight with six messages I received today.


The first message is from my friend, Charlie. Charlie wrote, "Thank goodness for the gentle loving care of people like Jey, Kathleen and Debbi and the support of friends like Tamra and Ann. I can feel the love and warmth surround you through the words in your blog on Sunday.I know the situation is impossible, horrible and awful and yet Mattie's spirit shines through it; what a testament to you and Peter for the son you've raised. I agree with Debbi, that Mattie's home is where you and Peter are and where he feels his physical needs are met. Your apartment is a place he loves but has moved beyond; this way it remains a place where Mattie lived while the hospital bears the pain of his passing. I believe you have a "mission" after Mattie's death; I think you may see glimpses of it now but don't worry if the whole plan is not immediately visible...it will come. I wish you strength to continue to do what is needful for Mattie; I pray for all of you many times each day. I hold you gently in my thoughts and may the One who sees all hold Mattie gently in his arms and keep the pain at bay."

The second message is from Rich Yep. Rich is a fellow SSSAS parent and the Executive Director of the American Counseling Association (of which I am a member, and have been involved in leadership activities with the Association). Rich wrote, "Just as thousands of others do, I continue to read your blog each day. And, after each installment, another prayer is said for Mattie, Peter and you. The other day, I was invited to speak in a few months to a group of counselors out in the Midwest. I asked about the theme of the conference and was told that it was “counselors and resiliency.” I immediately thought of you. This then led me to frame the long ordeal you have faced as something akin to being entered into a triathlon. The first leg of the triathlon were those first ten or so months when you and Peter did all you could to learn about Mattie’s disease, how to cure it, and how to advocate for him within the medical community. The second part of the triathlon was when you found out that there would be no cure this time for Mattie. At this point, you moved from hoping for a cure to how to make the remaining time as comfortable as possible for Mattie.The third section of the triathlon has yet to be run. This will be how you and Peter will carry on when Mattie has been called to heaven. Despite knowing that Mattie will no longer be in such pain, it will still be a devastating loss for those who are left behind. My thinking is that the resolve, inner strength, and resiliency that you and Peter possess will help to carry you through. And of course, you have legions of supporters and we are willing to help in any way possible. Vicki, we are all honored that you have shared your “triathlon” with us. Despite how weary you are, you and Peter continue to amaze us with how you continue to reach down (when it seems like there would be nothing left) and you still find the energy to advocate for Mattie. It is no wonder that he is such a special little boy given that you and Peter are his parents."


The third message is from Mattie's preschool director. Kim wrote, "You are constantly in my thoughts. Constantly. A number of years ago, a gifted teacher that worked with me, left RCC and spent a year volunteering full time with hospice. I will always remember a conversation I had with her after that incredible experience. She told me that one of the life-changing lessons she learned was that dying is one of the hardest and most challenging things that a body – and the spirit that gives life to that body – can do. She said that with disease, the body doesn’t just simply let go. It fights, and fights and fights. And the struggle is hard beyond imagining. She said it takes real heroes to go through it. What were once thought-provoking words have now taken on a cold and jarring significance – because of what you and Peter and Mattie are going through – because of what you have allowed so many of us to share and learn from. Vicki -- you, Peter and Mattie are all heroes. God knows, not heroes by choice (I suspect few real heroes are) – but heroes nonetheless as you stalwartly and unswervingly face what has to be faced. As you bravely make decisions that no human should have to make. But what I really want to say to you this morning Vicki, is that you are a good mother. You are a good mother. I have no higher blessing to give you."

The fourth message is from one of my former students. Betsy wrote, "I am so sorry that the cancer is taking over so quickly. I can't fathom the agony of watching your child go through this. I do understand how helpless you feel. Just know that you are doing the right thing by following Mattie's lead, keeping him in the place he wants to be, and keeping him as peaceful as possible. Understand that Mattie knows and feels your intense love and that your love, above all, is what will help him to leave this world in a state of peace. I went home and stayed with my dad for the last 9 days of his life. Each day I sat with him and helped him review his life (the cancer had spread to his brain so he was struggling with remembering things). I held his hand, rubbed his head and just made sure he knew how much he meant to me. This was so helpful to me when he died. I knew that he knew how I felt about him and how important he was to me. I knew that he went to the next world knowing he had been a great dad. This was so helpful during the grieving process. Like my dad, Mattie knows how much he is loved by your constant dedication and perseverance. Please know that you are bringing him great happiness through your love, even though he can't show it right now. Continue to let him know how you feel about him, try to talk about great memories you've had together, what an incredible son he is and how you've become a better person because he is part of your life, and always will be. My thoughts and prayers continue to be with you and your family. My heart goes out to you and Peter."

The fifth message is from Mattie's SSSAS art teacher. Debbie wrote, "I am in my studio reflecting on the magic that Mattie shared with us on the day he painted here. I am playing the same Carlos Nakai CD I played that day. What I see is the precious image of Mattie swirling around like a leaf in the wind with his arms stretched out as much as he could. I watched his little feet glide on the shiny bamboo floor like they were moved by a soft wind. He tilted his head back like he was trying to let the sun shinning in the skylights touch his face. He danced three different times during the painting session. He painted with great energy and intention. When he said..... "It's done. It's perfect." I knew it was. As a person who has spent 40 years of life trying to make children feel safe enough to be free creative spirits, perhaps this was my most fond moment. It remains with me now and always. Mattie's image is burned in my mind. His creativity, spirit and happiness will forever be felt in this studio space. I look left every time I get to the top of the staircase. Although the space is devoid of "Mr. Sun" and dancing Mattie, I see his image vividly. His spirit and memory will be with me in this place forever. His brief presence has made this a sacred place. "


The final message is from a former student. Tess wrote, "Once again I am overcome with such a flood of feelings for you and your family, and feel I must share with you how much you are in my daily thoughts and prayers and tears. I await the blog each night with emotions running high, and drink up your news and reflections with a heart full of love and pain and grief. I am so inspired and equally distraught by everything you are handling - being exposed to this kind of human experience, even just through your blog, is an incredible eye-opener and lesson in love, community support, suffering, child wisdom, medical trauma, and the transient power of human emotion across the realms. I honor you Vicki, you have clearly been called for a higher purpose, one with a heartbreaking and unfair call to action, but I have faith that you are touching so many lives that need a reminder about life and love. What you have done for my own life alone is something I have tremendous gratitude for. My wish is that you will find some solace of your own after this horrifying and brutal journey - so much goodness on your part deserves goodness returned to you. You are constantly in my thoughts Vicki, and have my support and love in heaps and bounds. Your bravery and strength have blown us all away, and I hope that you three can have as calm an ending to Mattie's time on earth as possible. Thank you for sharing your daily ups and downs with us - what a bridge you have built between so many people. Wishing you continued strength to lead your family and carry yourself through this monumental challenge."

Sunday, September 6, 2009

Sunday, September 6, 2009

Tonight's Mattie creation features one of his transformed cardboard boxes. Mattie made a house for the miniature Scooby Doo that he received from his magic friend, Bob Weiman. Notice that Scooby Doo has his own model magic couch, food bowl, and loft with a bed. Mattie was very fond of this miniature Scooby, and tied it to his wheelchair, where you can still find it today.

From the Night Prayer in the New Zealand Book of Common Prayer
(Thanks Charlie!)



Dear Life Giver,
Watch over those who wake or watch or weep tonight,
And give your angels charge over those who sleep
Tend your sick ones, rest your afflicted ones and all,
For your love's sake.
Pain bearer, we go into this night confident
That the dawn will break tomorrow;
Grant that when we come to die,
We may go gladly and in hope,
Confident of life.

Peter and I want to thank Tamra for another wonderful breakfast, and your offer to bring us breakfast each day while we are at the hospital! What do you say about such a lovely offer and friendship?! Thank you Tamra for your incredible support.

Saturday night was a killer. Mattie was up and very agitated from 9pm until 5am. Peter and I were working hard during that time, and literally were bolusing Mattie with IV dilaudid every 15 minutes. Clearly this was telling us that his fluid in his abdomen was accumulating. It is interesting how Mattie is literally passed out during the day but as the evening approaches he becomes more conscious of his environment. He isn't exactly awake, he is in and out of consciousness. However, at 4am, he asked me to tell him a story. Over the course of the last few months, I have created a whole story series of a young girl, named Goldie, and her friend, Mouse. Goldie and Mouse, clearly are like night and day, yet they have respect, fun, loyalty, and great understanding for each other. Mattie usually asks to hear these stories at night, and he becomes engaged and calm. Peter refers to me as the "Mommy pain killer." So I did tell Mattie a story and then by 5am, I couldn't stand up another minute. So I jumped into Mattie's bed with him and slept at the foot of his bed. It was a comedy show though, because Mattie is now on an air inflated bed, to prevent bed sores. But this bed doesn't like balancing myself and Mattie. As I was lying down, the bed started to deflate on the portion that I was sleeping on, and literally it was like I was sleeping on a metal slab for two hours. None the less, it kept Mattie quiet and calm for two hours, so it was more than worth it in my book.

Peter asked Sarah Marshall, our wonderful HEM/ONC nurse, last night for the CT scan results from Friday. Well I think the results speak volumes to the aggressiveness of Mattie's cancer and the reason for his intense pain near his stomach. Mattie has a tumor in the top of the abdominal cavity that last week measured around 2cm. This week, this tumor is now 6cm in size, and most likely will just continue to grow. I found that incredible growth in one week, and it seems like all resources in Mattie's body are now going into the tiring effort of tumor growth and production. The disease is taking Mattie away from us alittle bit each day, and it is most noticable in his lack of energy, his inability to talk, his pain, and intense fevers (103 degrees!).

At 11:30am, Mattie was wheeled down on his bed to the Interventional Radiology department for the insertion of an abdominal drainage tube. Debbi, our sedation nurse angel, wasn't with us today, and things did not seem to run as smoothly. Debbi knows exactly what is needed and what works for Mattie, and this level of connectiveness puts me at ease. I had the opportunity of meet the attending physician who was going to place the drainage tube into Mattie's abdominal cavity. He started out the informed consent process with me by letting me know that normally such a procedure is not done in children or in people who do not have an infection of the cavity. Mainly because such tubes can cause infections in patients, so why insert a tube if you don't have an infection!? In addition, he told me that during the procedure Mattie could bleed out or they could injure an organ. Lovely! By the time he finished with me, I wanted to simply say.... ARE YOU KIDDING ME?! My son is going to die, and you are performing a procedure to relieve pain, do you think I want to hear about these potential risks?! Definitely NOT! We live risk each and every day. It is this level of insensitivity within the medical community that I find shocking and SO irritating.

While Mattie was under sedation, I had the opportunity to talk with Debbi (our sedation nurse angel) by phone. Debbi reads the blog each day, and she was intrigued by the fact that Mattie did not want to go home, and elected to stay in the PICU. It is a fascinating decision, I agree, especially since Mattie was always a home body. He loved being at home, and doing projects at home. Even during his treatment, he always looked forward to returning home and being surrounded by his things! But I noticed even before we entered the hospital this week, that Mattie was NO longer interested in his "things." Even things that were once super important to him. He wasn't even interested in opening up packages that came in the mail. This caught my attention immediately. Debbi told me that Mattie most likely doesn't want to return home because he doesn't want to die there. That Mattie doesn't want to die at home because he knows this would crush Peter and I. I think living in our current home will always be difficult now because every corner of it will remind me of Mattie, but having him die in my home would be particularly difficult for me. When Debbi shared her thoughts with me, I told her that I honestly hadn't looked at Mattie's actions this way, because I thought that this level of reasoning was far more mature than what I would expect from a seven year old. None the less, as Debbi was talking, something struck me immediately. Mattie has been in the hospital since Tuesday, and is getting sicker and weaker. Yet he isn't asking me a single question. He isn't asking me why we are doing scans or procedures! You need to understand that throughout this year, Mattie played an active role in his treatment and would ask solid questions of us. But now there is NOTHING! No questions. I chalked this up to the simple fact that he is on such high doses of pain medications, so I figured he just was too out of it, to ask questions. However, Mattie does have lucid moments, at like 4am. But even at that hour, he asks me nothing. Debbi's response was, "Vicki, that is because Mattie knows he is dying" and he just doesn't want to talk about it. In a way, I suppose Mattie doesn't want to think about life without Peter and I, nor does he want us to reflect on it. I still have trouble accepting that all of this is going on in Mattie's head, but as Debbi and even Ann told me today, this is MATTIE BROWN! Mattie is capable of anything, and if this is true, then what a remarkable young little boy I have. A little boy that even in the end is worried about his parents and how we will live life without him. I have debated talking to Mattie about what is happening and how to say good-bye. But in all reality, Mattie is making this easy for us, we are following his cues. Saying good-bye can't be about Peter and I, it has to be what is peaceful for Mattie. Perhaps our way of saying good-bye to him, in a way he can accept, is to continue to be physically and emotional present, to advocate for his needs, and to remind him always that we love him and are here for him. Mattie does open his eyes periodically now and then to tell Peter and I that he loves us. He never did this before, so I am beginning to see that Debbi maybe onto something.

The placement of the drainage tube went very well today, and it is working like a charm. So far the tube has removed over a liter of fluid. However, Mattie's body is leaking out more fluid than he is taking in through IVs. This is causing his blood to clot, and Mattie is being given Vitamin K shots to thin the blood, and was also given Fresh Frozen Plasma (Plasma transfusion is indicated in patients with documented coagulation factor deficiencies) transfusion. There was talk of inserting a catheter in Mattie's bladder because he is not urinating very frequently, however, I refused that option tonight because I did not want a catheter placed in Mattie without sedation. Debbi has reminded me, and I am happy she has, that I have a right as a parent to refuse any treatment that will cause pain, and I can demand the use of sedation. That piece of information was very empowering!

While Mattie was sleeping this afternoon and recovering from his procedure, Ann came to visit. She brought us a lovely lunch from a fellow SSSAS mom and friend, Tanja. Thank you Tanja for supporting us throughout this process. Ann also brought Mattie a DVD that was created for him by the SSSAS football team. Thanks Coach Dave! We haven't watched the video yet, but I so appreciate the team's thoughtfulness and kindness.

Peter remained with Mattie, had lunch, and then got a chance to take a brief and overdue nap. Kathleen, Mattie's wonderful HEM/ONC nurse, told me she tried not to enter the room much, so that the boys could sleep! I appreciated that! Meanwhile, I sat outside in the hospital rose garden with Ann. I had lunch, got to feel the sunshine, and a chance to chat and share my thoughts and feelings with a person who has become a very central part of my life. Ann realizes one of my concerns is the need to keep Mattie's memory and spirit alive. So today we talked about establishing a foundation or research center for Osteosarcoma. We also talked about ways to memorialize Mattie for myself. If we decide to cremate Mattie, there is a company that will actually create diamond rings or necklaces from 8 ounces of the ashes. The company can remove the carbon components from the ashes to actually create a diamond. I am sure there are many other special ways to memorialize a loved one, but this one really spoke to me, because nothing is harder or more brilliant than a diamond, and this would always keep Mattie with me. I know other osteo families read this blog, which is why I plan on sharing this link: http://www.lifegem.com/

After I spoke with Ann, I started to try to rationalize that perhaps life was worth living after Mattie's death. My mission is to enlighten others about osteosarcoma, to help families stricken by this horrible disease, and to keep Mattie's spirit and love alive always. Getting me to think beyond Mattie's death isn't easy, nor do I like to go there, but Ann is able to sit there with me, despite what comes out of my mouth.

In the afternoon, I also met up with my parents at the hospital. My parents purchased Mattie something he really wanted. As I clear all of this with Linda, I will fill you in as to what it is, but for now, suffice it to say, when Mattie wakes up periodically he enjoys the sight he is seeing. At this point anything that brings Mattie happiness I love. If you try to take it away from Mattie, you will have to go through me, and I assure you I can be difficult if you mess with Mattie and his happiness. Stay tuned for more details, but my consistent readers can probably already guess what the gift is! I had the opportunity to sit and chat with my parents today, and I guess as I start to process Mattie's illness and pending death, I am moving from intense anger to now more sadness.

We would like to thank the Coopers tonight for a lovely homemade dinner. Christine, I appreciate your e-mail tonight. It meant a great deal to me, and it is hard to accept that our boys won't be in class together or playing again, and part of my own insecurities that I face is how can my friendships remain strong and alive, if Mattie is not part of the equation? After all, through Mattie I met some wonderful moms, but if I am not a mom, and do not have a child to take on a playdate, what happens to these friendships? Though Christine wasn't answering that question tonight in her e-mail (because I did not pose it to her), her e-mail did provide me with peace and comfort.

I would like to share five messages with you tonight. The first message is from my friend, Charlie. Charlie wrote, "So many lessons learned from Mattie's illness that we all wish had never happened. Don't wait to do or say something that is meaningful to you because you never know what will happen next. Trust your instincts. And so many others. I know we would happily trade them all and continue in ignorance if it brought Mattie more painfree time with you. I cannot believe how quickly the disease has taken over and is separating Mattie from those he loves. You and Peter are doing exactly what we all hope someone loves us enough to do; to find the right path as difficult as it is, and ensure that all the doctors and other healthcare providers do what is desired. You will have to advocate and be strong to ensure your wishes are respected but if anyone can do it, you and Peter can. You have so many sad decisions to make in the days ahead. Talk them through with Peter, your spiritual advisor and your parents. There is no right or wrong here, only what feels better to you. My heart goes out to you and I will continue to pray. Prayers for Mattie's peaceful passing and strength for you and Peter are flooding in from around the world. Know you are in many hearts today as Mattie's time here comes to a close and a new door opens for him."



The second message is from one of our family friends. Kathleen wrote, "There are no words good enough, or helpful enough for me to say and you to hear. I want to thank you for sharing Mattie's life with me with all your pictures and blogs. It has meant the world to me. Your incredible gift of strength and courage (which I know now seems fleeting), the love your child has, that you have given to him, you can see this in the pictures. As I walked the bridge yesterday I lifted all of you up to God, and as I was praying I saw a whirlwind of light, surrounding and within you, Peter and Mattie, and then Mattie was brought up and away by this light, and then incredible light and warmth was filling around and within you and Peter, and I believe that this was God showing that he will fill you with all his love for all the love you gave to Mattie. There is an old song by the Moody Blues called Question, this phrase comes to mind."And when you stop and think about it, You won't believe it's true. That all the love you've been giving, Has all been meant for you." Do not give up your heart Vicki, although I imagine you feel as though you do not have one, or it is leaving with your son. You have done all and beyond that a Mother could do, and as others have said to you, you will always be Mattie's mother. I think there has to be a part 2 to this e-mail. Knowing I am a single Mother of one child, I think you know I cannot imagine, but try to imagine what you are going through, I absolutely would be flipping out, dying inside, freaking out, snapping, bargaining and grasping at anything I can to save my child, and anger, well I would be furious, so go ahead be angry beat the crap out of some inanimate object if you can, because you have every right too, then just climb in bed next to your son and hold him as long as you can, that is the Mother in me speaking."

The third message is from my colleague and friend. Nancy wrote, "I don't know where to begin because I have so many feelings bubbling up inside of me. First, it is so clear that Mattie knows what he needs and gratefully shares it with you. A house is only a dwelling. A HOME is where needs are met like comfort, safety, care, spending time together, and LOVE. Unfortunately for your family, your home this last year has been the hospital. I know from our experience with Benjamin's birth last year that the PICU is a special home. I am glad that you have so many ministering angels surrounding all of you. This is the time when gentle souls are needed. I know that you are faced with so many impossible decisions, yet, Peter and you have always, always done the best for Mattie. By your own accounts, from his comments and the smiles on his face through so much of this ordeal, he has achieved such a level of comfort and love in his seven years than many do in a lifetime. He is a true CHAMPION! Each writer that you've listed on the blog speaks the same language, one of love and concern. We are all thinking and loving all of you. You will make these last times for Mattie as comfortable as you can. It is the hardest task to watch your child be in such pain and know that his time on earth is limited. I believe that each reader looks at their children and grandchildren differently because of what you have shared with us. You are so on target when you say the waiting for a treatment to be over is not always an option for something like the Make a Wish Foundation. Peter and you will be advocates of hospitals listening to parents more as they are the ones who understand their children best. My prayers and thoughts are with you today and every day."

The fourth message is from a fellow RCC mom and friend. Mary D. wrote, "In my previous email I said I was not going to bother you with a lot of email traffic, and here I go again. There’s something on my mind that I feel so strongly about. I have no business really even discussing this with you. First of all, it is such a completely uncomfortable subject, secondly, I know I am not family or a close personal friend. I simply want to say that I totally get your feelings about cremation. You definitely want to have Mattie with you at all times, forever, and you will want him buried (or whatever you choose) right along with you and Peter some day. Who is to say that, if you would have Mattie buried in the DC area (assuming that you might), that you and Peter would stay in the DC area forever. I know it is unlikely; however, what if in several years’ time you and Peter decide to move away, decide things are still just too painful, head to the Caribbean or whatever. You will want Mattie with you wherever you go. I, too, am Catholic, and was raised very “old school Catholic.” The idea of cremation seems so foreign to me – yet I know right now in my heart that cremation is what I would choose. You already know that life is so unpredictable. Whatever your ultimate decision is, Mattie will always be with you, and it will be the right decision. It is so unfair, though, that you have to make this decision for your Son."

The final message is from my mom. My mom wrote, "Thank God for Tricia, Sarah Marshall, Kathleen, Katie, Miki, Ellen, Melba, Erin, Janelle, Nguyet, and Debbi! Loved Katrina too!! What a great nurse!!! Jey, the tech superstar too!! Vicki, you are surrounded by love and compassion and in this crisis, that is a great blessing! If you requested a company of angels to minister to Mattie's dying wishes and his medical needs, your prayers have been answered. For these wonderful nurses are indeed angels of mercy that would pass muster with grandma, who had the calling herself for caring for the sick with great tenderness. She would be pleased to know that Mattie is being cared for by the best in his final days and is probably there in spirit to lend them a helping hand. These nurses are tender, loving and caring about every painful contact they make with him whenever they administer medicines or adjust tubes, IVs or monitors and treat him with respect even though he no longer can communicate or challenge them with his insights and sharp questions to get an understanding of "what" they were doing or "Why." Before his latest setback, Mattie was the master of the art of negotiation and took it to a level of sophistication that many adults would find intimidating but his nurses knew the keenness of his intellect and realized early on that if they wanted to get anywhere with Mattie they had to appeal to his reason with a little bit of 6 year old humor tossed in for good measure. After a lively exchange of give and take and a smidgen of compromise tossed in, "his angels" would be given permission to go ahead! But the green light was always conditioned on his satisfaction that he had some control over the process and was able to set the "rules of engagement" before he consented to treatment. Mattie has proven throughout this long and difficult year that he is one amazing fellow who can handle pain, stress, anxiety and extreme discomfort like a seasoned soldier who fights on without any sign of self pity. Right to the end, Mattie makes all of us proud of his spirit, his grit and his feistiness in the face of all the suffering he has endured. We love you Mattie and we always will remember what you have taught us about life!"