Friday, September 18, 2009

Friday, September 18, 2009

Mattie, six months old, showing us his third tooth that was emerging from his gum line! I love the look he has on his face, as Peter is describing what he is seeing in Mattie's mouth.

Poem of the day (Kristi, my Osteo friend, I am NOT sure where you find these poems, but they mean a great deal to me!):

The Loss Of A Child

The moment that I knew you had died, My heart split in two, The one side filled with memories, The other died with you.
I often lay awake at night, When the world is fast asleep, And take a walk down memory lane, With tears upon my cheek.
Remembering you is easy, I do it every day, But missing you is a heartache, That never goes away.
I hold you tightly within my heart, And there you will remain, Life has gone on without you, But it never will be the same.
For those who still have their children, Treat them with tender care, You will never know the emptiness, As when you turn and they are not there.
Don't tell me that you understand, don't tell me that you know. Don't tell me that I will survive, How I will surely grow.
Don't tell me this is just a test, That I am truly blessed. That I am chosen for the task, Apart from all the rest.
Don't come at me with answers That can only come from me, Don't tell me how my grief will pass, That I will soon be free.
Don't stand in pious judgment Of the bonds I must untie, Don't tell me how to grieve, Don't tell me when to cry.
Accept me in my ups and downs, I need someone to share, Just hold my hand and let me cry, And say, "My friend, I care."

Through Mattie's terminal illness, Peter and I have learned a lot about ourselves, our love for Mattie, and of course the community that we are fortunate enough to be tied to. One of the beautiful things Mattie was able to give Peter and I is the ability to connect to people, and God knows these connections now with our Team Mattie friends are what keeps us going each and every day. This has been a year of great and profound sadness, and yet in the midst of this sadness, I have learned, felt, witnessed, and experienced the power of special people in my life. Friends that even through the worst of Mattie's treatment never turned their backs on us, but only kept asking, how can we help? For all of you, I am deeply humbled, grateful, and though the hole Mattie has left in my heart is unable to be filled, your friendships keep us afloat and surrounded with an amazing gift of love.

I could write many blog postings about how each of you has touched my life in some way, but today I would like to tell you about my friendship with Ann. Ann, as you know, has been our Team Mattie coordinator and champion of HOPE for over a year. What you may not know is that prior to Ann taking on this role, we did not know each other that well. Ann and I interacted with each other at RCC and SSSAS (Mattie's schools), sat on the RCC parent advisory board, and maybe worked on a project or two, but that was the extent of our interactions. Needless to say when she took on the role of Team Mattie Coordinator, neither one of us knew what would result from this major undertaking. However, Ann saw me this year under the most challenging, humbling, and heart wrenching circumstances. She witnessed more than I care to describe, and yet never flinched, never wavered. As the months wore on, I noticed she never tired nor did she view helping us as a chore. Instead through getting to know Mattie, I could slowly see that he hooked her in (as he was SO good at!), and she too fell in love with my son. In turn, I ask you, do you think it is possible not fall in love and respect a person who deeply cares for your child? I imagine, like me, you would be saying 'No!' I comment to Ann very often that I am at times in awe of our friendship. With Mattie's death, I find great comfort in spending time with Ann, maybe because we have been united by cancer perhaps, but there are aspects of her that remind me of Mattie, and in fact, there are times I look at her and feel almost as if Mattie left a piece of his spirit within her, so that I would never forget him and that Peter and I would never be absent of his physical presence. That may sound very strange or even spiritual, but because Mattie's death is so profoundly painful, I accept any gift or comfort that remains in my life, and Ann's friendship is one of those gifts.

I tell you about my friendship with Ann, because I feel it is important that you know in the midst of shutting out the world, I am never really isolated. It also may help you understand my motivation and my commitment I have to helping Ann with her dad, who is in the process of dying. I find it fascinating about myself, that in the midst of grieving the loss of Mattie, I am also able to sit with Sully, Ann's dad, and try to help him as he approaches his end of life. Mattie taught me a great lesson about myself, my inner strength, and my courage to be able to face death head on. Something I would have shied away from prior to this year. This may sound depressing to my readers, but in all reality, it is actually very therapeutic, and I also feel that this experience of helping Sully further unites Ann and I, and in essence we are grieving for Mattie and Sully together, yet supporting each other through this very hard journey.

Last night, I went to visit Ann at the assisted living facility and stayed there to help her with her dad. Prior to visiting Ann, we were e-mailing back and forth and trying to figure out what was going on with her father. Despite the fact that you know the person you are helping is dying, as a family caregiver it is vital to make sense out of what you are seeing so that you can address the problem as effectively as possible. Educated choices are always the best choices. Some how things ALWAYS are worse at night, the patient's symptoms and of course our fears about what we are observing are magnified. The conclusion we came to after doing some significant literature searching is that Ann's dad is delirious, and with delirium can come a specific symptom called terminal restlessness. The word terminal signifies just that, you see intense restlessness and an inability to sleep in the final hours or days of some one's life. I am not sure if Ann or I knew what we were seeing prior to this unofficial diagnosis, but putting a label on it, greatly helped us moving forward. Because it enabled us to see that we need to figure out a plan to humanely treat the signs and symptoms Sully was presenting. Like myself, Ann is conservative when it comes to dispensing medications, especially psychotropic medications. However, when one faces pending death, you get the courage and stamina to do things you never thought you would do before. I saw what Peter and I were able to do for Mattie in his final hours, and I am still amazed, massive amounts of drugs were coursing through Mattie's veins. However, unlike my amazing support team at Georgetown, I find that the support given to an older adult going through the death and dying process is not equivalent. The family caregiver is really left to one's own devices. Does this surprise me? No! Does it disappoint me about our health care system? Most definitely! It is plain and simple, older adults are viewed at expendable, and it is acceptable that they should die after living a long life. Therefore, the strategies, interventions, and level of care in their final hours are less than stellar. I view the nursing team and doctors I had around me at Georgetown and then compare it to what Ann has around her at Sunrise, and I see the stark and upsetting difference.

For those of you who are interested, Sully is experiencing terminal restlessness, which is a medical term that is used to describe a form of confusion that can often occur in the last few days or hours of life. It is often associated with increased agitation, twitching, or general restlessness, and can be very distressing for relatives and caregivers. In some cases, patients with terminal restlessness may make noises like groans, moans or grunts that appear to be related to their breathing. They may not even necessarily be aware of their own behavior. Those who work with the dying know this type of restlessness or agitation almost immediately. However, the public and patient's family may have no idea what is going on and often become quite alarmed at their loved one's condition. What does it look like? Although it varies somewhat in each patient, there are common themes that are seen over and over again. Patients may be too weak to walk or stand, but they insist on getting up from the bed to the chair, or from the chair back to the bed. Whatever position they are in, they complain they are not comfortable and demand to change positions, even if pain is well managed. They may yell out using uncharacteristic language, sometimes angrily accusing others around them. They appear extremely agitated and may not be objective about their own condition. They may be hallucinating, having psychotic episodes and be totally "out of control." At these times, the patient's safety is seriously threatened. Needless to say, seeing your loved one suffering like this, unable to sleep, incoherent, restless, agitated, and confused, it is profoundly upsetting, and seeing death in this manner does make you question life and our priorities in life. As I said, Mattie has taught me about death and his courage in his final hours have filled me with strength, determination, and fortitude like I never knew I had. Mattie was my gift, and he taught me some very serious life lessons. Some of which may take me a lifetime to come to terms with.

I am hoping you can appreciate why I am sharing this story about Ann with you. It is part of my process of healing to help someone who means so much to me, and in the process of helping her, I am able to confront some of my own feelings about Mattie's death.

We would like to thank the Wright family for supporting us tonight with dinner. Thank you for all your continued efforts.

I would like to end tonight's posting with five messages I received today. The first message is from a colleague of Peter's. Eva wrote, "When you become a parent, along with the joy you become conscious of a few deep fears that cut at the core of parenting. Over the last year, you have fearlessly blogged the big one, namely the illness, treatment, and death of a child. Most of us have watched in awe as you shared Mattie’s world with us on a daily basis. The ins and outs of cancer care, the hospital, chemo, the lack of privacy, and the challenge of watching the dearest thing you have in the world leave you. I only met Mattie in person the one time while delivering dinner, but it was clear that his spirit for life was really strong. He was jumping on his grandmother at the time, and the joy in his face in spite of the cancer, and the fact that he was losing his hair and everything else was clear. I was driving my daughter and another child to a play date last weekend when my daughter asked me about the boy that liked cockroaches and bugs and how he was doing. I sucked back tears and said that everyone had tried their best to treat the cancer, but that he was gone. She said that maybe he went to heaven so that he could watch over his parents. The interesting thing is that she remembered looking for sticky bugs to give to him and wondered if there were bugs in heaven for Mattie to play with. It made me think about the comment that your friend Jey made about Mattie’s wings and I thought that wherever he is, Mattie has bugs crawling on his wings and he is probably laughing about it."



The second messages is from one of Mattie's outstanding HEM/ONC nurses. Many of you may recall that Kathleen created a beautiful Curious George plaque on one of the art therapy statues that reads, "I wish for a Mattie Miracle." Kathleen wrote, "I have scripted this email in my head numerous times, but never feeling like my words were truly expressive of my thoughts and feelings. But none the less, here it goes... I am truly and deeply sorry for your loss. Mattie was an amazing boy, a boy that knew what he wanted and how to get it. A boy that had an amazing imagination and a creative flare. Mattie was a typical boy who loved cockroaches and all things slimy and creepy. He was a boy who loved to play pranks, especially on his mother. He was a boy who loved bathroom humor. He was a boy who was bright and intelligent. And a boy whom we seemed to forget was only seven, because he was mature beyond his years. He was a boy who fought hard and endured things much harder. He was a boy who was courageous and brave. But most importantly he was a boy who was loved. Loved by his mom and dad. Peter and Vicki, I will never forget Mattie. Mattie will always be my little monkey boy. I am honored to have known him (and you both). I have learned so much from Mattie- he always kept me on my toes. And he was and always will be a daily reminder of why I went into pediatric nursing to begin with. Lately I have been thinking and wondering if I am meant to be a pediatric heme/onc nurse. I really struggled with returning to work after Mattie's death. I literally had a breakdown driving into work, then again before walking onto the unit and again when I stepped foot onto the unit. I struggled with my own feelings of life and death. I thought that everything I had been doing was a lie. How could I continue to be brave and strong for my patients and their families when I know what can happen? How can I continue to tell my patients to keep fighting and endure chemo, surgeries, radiation, etc. when sometimes the fight doesn't lead to the victorious ending called remission? How can I hold my patient's hair back while they get sick, rub their back and tell them it's worth it in the end? But then I just think of Mattie's face and I realize I am doing exactly what I am supposed to be doing. It is patients like Mattie that make me want to be a heme/onc nurse. To try and bring some fun and laughter to the life of hell that has become their life. And it is also patients like Mattie who make me want to be a better heme/onc nurse. A nurse who connects to their patients and families, and is changed by them. Vicki and Peter, as terrible as your last thirteen months have been- they have made you a catalyst, to change things for the better. You have brought out the good in people- not just nurses and doctors, but all those on Team Mattie. The stories and emails on the blog are testimony to that. I often think back to my tile I made for the wishing elephant, how I wished for a Mattie Miracle. Although God had other plans for Mattie, he did grant a miracle. Vicki and Peter I know your fight against osteosarcoma isn't over, it is just beginning. You are going to change lives because of your dedication to this awful childhood cancer. You will bring hope and faith to other children with osteosarcoma and their families. As much as we all wish it could have been Mattie, I know that Mattie is looking down on you two proud to call you his parents. Like I told you the night before Mattie passed away, never give up on each other. One of the things that always amazed me of your family was your relationship with each other. Vicki and Peter, never once have I questioned your relationship with each other. Often times, I so sadly see families fall apart because of cancer. But your relationship just got stronger and more secure. You are so lucky to have each other to share your pain, reminisce on good times, and to overcome this, which I know you will. I have learned so much from you both, and for that I am forever grateful. I am so honored to have taken care of Mattie over the course of the year, and thankful I was able to take care of him over the last few days of his life. I hope and pray that time will ease your pain, but never take away the fond memories you have with Mattie. I will never forget your son, nor will I forget you both."


The third message is from the grandmother of one of Mattie's friends from preschool. Ann G. wrote, "As members of Holy Trinity we will also place a "named brick"at Trinity from Sam, Maddie, and Ryan. The brick will have Mattie's name on it and will be placed in the garden area of Trinity and hopefully will serve as a visible memory of a little boy who showed remarkable courage both at home and at Georgetown University Hospital."


The fourth message is from a fellow RCC mom and friend. Many of you are familiar with Ashley, since she ran two prayer services this year for Team Mattie. Ashley wrote, "How to begin with words. Know that I began this email by reading the blog and sitting in a moment of silence. We are so, so, so very sorry and deeply impacted by Mattie's dying. I read the blog witness of the last hours of his life over and over. I sent it on to some friends telling them "you must read this." My friends who didn't even know Mattie were put to tears over the story and impact of his life and death.When we told Sam about Mattie dying, he sat and looked stunned. After a minute of looking gazed over, he just walked away. I checked in with him later and he started asking about what will happen to Mattie's body. Our dog, Murphy, died in the spring and we had Murphy cremated so we've already had a conversation about this as it related to a dog's life. I explained to Sam about your choice to have Mattie cremated. Sam paused, looked up, and said, "did Peter and Vicki decide to have Mattie cremated so he can go back into the world again?"Why, yes, Sam. Mattie will be going back into the world again. We are at a place and time that no one ever dreamed of or wanted, Vicki. But know that another 7 year old boy has imagined Mattie re-connected to the world."


The final message is from a fellow RCC mom, and the mom of a friend of Mattie's. Beth wrote, "No words that I type seem to be worthy. It’s taken me a full week to begin to even be able to write to you. As with so many others, I have prayed with you, laughed with, and cried with you so much these last 13 months. It seems so inadequate to say “I’m sorry”, but I truly am. My heart aches for you both. Who knew that spending 2 years at RCC with Mattie would in the long term affect the rest of my life. You have both shown such strength and love in every decision you have made and in every word you’ve shared with us through the blog that I continue to be in awe of you. And, what can one say about Mattie. He was your world, but his reach was so broad that his memory will live on. He touched so many lives that dare I say hundreds of people have been changed forever by knowing him. That smile, that thoughtful introspective way he had about him. I remember clearly one day in the block room watching Mattie and Charles building with the blocks and Mattie stepping back and just looking at the blocks and I tell you I could almost see the wheels in his brain turning as he contemplated his idea and then very calmly and assertively told Charles that if their creation was to be a skyscraper it needed to be taller than the two of them so he pulled over chairs to help them and would not stop until we got the building to be taller than either he or Charles. The fact that there are hundreds and hundreds of stories like that about Mattie can only tell how he touched so many lives even before his battle began. I must admit that I think in many many ways that Mattie’s life, although short, packed more power and impact into that short time than many do in decades. He touched everyone he met and for that you should proud. I walked into RCC yesterday and I think at that point his death hit me head on for the first time. It indeed took me a couple of hours to get myself together. I interacted with Mattie only for those years at RCC but I must tell you that he made an impression even then. His death makes my heart ache. I’m confused and sad and frankly a bit angry so I feel like if my emotions are this strong I can’t begin to understand where you are so I won’t even pretend to. I just hope that you know that you two remain important to all of us who have followed your journey through the blog and that your willingness to share your journey has touched us all in ways we would have never imagined. "