The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://www.mattiemiracle.com/ and take some time to explore the site.
We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:
.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!
August 22, 2009
Quote of the day: "Tears are the silent language of grief." ~ Voltaire
Thank you Charlie for this beautiful poem!
A sad journey
Filled with loss
And painful steps
And more steep slopes
Than one person can
And so we walk
Arm in arm
And I will support you
Until we reach
None of us wanted.
Mattie now goes to sleep early and wakes up quite late. Tonight, he was in bed by 8pm, which sounds like a typical bed time for a child, but you need to understand that just about two weeks ago, Mattie was going to bed at 1 or 2am, and waking up at 8am. In addition, just two weeks ago, Mattie was breathing on his own without the use of oxygen, and had a ton of energy to play and do physical therapy. Now just holding is body up is taxing and tiring. There are times during the day, he is talking to you, but he is doing this with his eyes closed. Mattie's pain appears to be managed, but remember he has a 37mcg Fentantyl pain patch on his back and a continuous drip of IV morphine. Despite the pain management, he continues to experience nausea and vomiting, even though he is on plenty of anti-emetics. I am happy to report thought that Mattie is fever free and the Vancomycin seems to be helping.
When Mattie woke up at noon, he was excited to see what the tooth fairy left him. She wrote him a note to let him know she was fresh out of hotwheel jeeps and 18 wheelers, but did leave him two cars, and promised as soon as she could find what he requested, she would be back. Mattie was very happy with this deal, and even more thrilled that she left his tooth behind for him to keep. Mattie has lost about three other teeth prior to this one, but this tooth fascinates him. He has been carrying it around in his tooth fairy box all day!
Mattie played with my parents in the early afternoon, while Peter and I had lunch outside on the deck. Mattie continues to play his Captain Mattie game, and my parents play intensely with him in shifts. They play, take a break, and then come back and play. I think this strategy seems to be working for Mattie, and as Peter and I commented tonight, we are thankful he is playing with them, because we are so BURNED out from playing, advocating, providing medical care, and of course now having to think about Mattie's pending death.
Toward the late afternoon, when Mattie was getting tired, I left the house to visit Ann's parents at their assisted living facility. Ann is currently out of town, and I try my best when she is away to visit her parents, because I know the level of isolation they experience on a day to day basis. I certainly wish I had the time and energy to do more to help Ann's parents, but despite the fact that I do not visit them consistently, I find that Mary and Sully (Ann's parents) are always very appreciative of my visits. In fact, Mary and I had a very moving conversation tonight. She told me she would give up her life, if it meant that Mattie could live. I found Mary's offer very touching because in all reality, she and I have only known each other for a year. Yet, I think time in this case doesn't matter. What matters is this is a mom who has already lost a son to cancer, and wants to prevent another mom from having to experience this same level of heartache. Mary also looked at me and told me that I was a good person, who does many loving acts of kindness. She told me that God sees all of this, and hasn't forgotten about me. I am not sure how she knew this was how I was feeling, but it could be based on her own experiences that she is deducing how I am feeling. Needless to say, I think my visits to Mary and Sully, have taught me one very important lesson. Through suffering and experiencing some of the worst things life has to offer, it bonds you as friends in a very powerful manner. Because I know Mary loves the feeling of getting her nails done, I gave her a manicure tonight, brought her fresh flowers (because to me this brightens up even the darkest of days), and also sat with Mary and Sully in their room while they were having dinner. I desperately needed to get out of the house today, and I am happy in doing so I could bring happiness to someone else's day.
When I arrived home, my parents were playing with Mattie. However, Mattie was wiped out by 7:15pm, and wanted to go upstairs to bed. So we carried him up, which is a feat, since he is connected to two IVs and oxygen.
Peter did let me know that Rev. Jim Greenfield, the priest who gave Peter and I pre cana and baptized Mattie, is visiting us tomorrow to discuss Mattie's funeral and answer other questions we have. I have known Jim for years, since he was the director of the Newman Center at The George Washington University. Jim is also a mental health counselor and gave me my very first client, so I feel very comfortable talking to him. I just wish that the conversation was of something more life affirming. Peter and I have been talking about what to do to acknowledge Mattie's death without having a typical wake. We will certainly have a funeral, but growing up I went to enough wakes with open caskets, that I know this is NOT something I want for Mattie, not for a child. Instead, I am reflecting on what my neighbor, JP, told me about. He told me about a traditional custom in Puerto Rico, in which there is a celebration honoring the memory of the child before the actual funeral. So I am giving that some thought and will discuss this with Jim tomorrow.
We would like to thank Nicole L. for a lovely home cooked dinner and fabulous cookies. Thank you for your support!
I would like to end tonight's posting with two messages I received today. The first message is from my friend, Charlie. Charlie wrote, "This continues to be a journey of sadness and loss of childhood joys for Mattie. It hurts to read how much he wants to do but cannot; he lacks the energy to play, the ability to eat. And how awful for you to have nourishing food that Mattie is unable to partake of. We all take for granted our family meals; to be able to sit and enjoy them together. You and Peter have been denied that joy for some time and I wish I were able to give it back to you. I think Mattie knows he is fragile and that he is far sicker than ever and his wish is to remain always a part of your life. I hope even in the midst of these trying, exhausting days, there are moments of love to store in memory. I hope the chemotherapy to come is able to give him some physical comfort and relief from pain. We all continue to pray for you."
The second message is from a fellow colleague and friend. Diane wrote, "I was devastated to read that you’d run out of medical options for Mattie. I’m reading more and more of your blogs through tears. I so want to offer you and Peter comfort at this time when there’s none to be had. Months ago I wrote to thank you for starting Mattie’s blog. You inspired me to create an on-line community for my father in his sudden illness. Dad’s heart attack led to a cascade of organ problems—above all, compromised lungs. I’m heartbroken to realize your experiences now echo ours. Maybe it will help to share how your family’s served as a beacon for me and surely hundreds of others this past year. There’s so much to learn from your blog. Above all, your family’s strengths. Your gifts as parents. Also the dedication and skill of (many) medical staff. As you’ve seen, critical care nurses don’t just employ technique, but also empathy and insight. The best doctors share their expertise, but also their tears, with family making life-and-death decisions. Also the import of friends, family, and community. Finally, to my surprise, and a little embarrassment, I find each blog puts my own experience more into perspective—recalling last year’s hospital sights and sounds with less passion. Please know that you have one more warrior here in your fight against osteosarcoma and childhood cancer. Your family’s in my prayers and the prayers of so many others. Perhaps someday we’ll understand how and why those prayers were answered with such challenges."
August 21, 2009
At around midnight tonight, as I was administering Mattie more medication, and Peter was rubbing vaseline on Mattie's lips, Mattie let out with a tiny scream. I immediately panicked, and being tired myself, I landed up screaming too. Why was he screaming? He screamed because his front tooth, which has been hanging by a thread for weeks now, finally popped out! I wasn't sure what I was doing first, pushing medication through Mattie's central line, or catching the blood dripping from where the tooth emerged from! Once I pulled myself together, we then started talking to Mattie about what he wanted from the toothfairy. So in the picture you will see Mattie holding his wooden toothfairy box, which I remember buying with him the last time we were in Florida, and smiling with his front tooth missing. He had me write a note to the toothfairy, because he has requested that she NOT take his tooth, but still leave him some things such as a hotwheels jeep and truck! He has it all figured out.
Blessed Lord we thank you for being where we cannot be.
We thank you for keeping vigil in Mattie’s heart and mind
For laying your hand on his pain and fear
For knowing the path he is on and where it will lead
For opening the door to his future and welcoming him with loving arms
For sharing life with him.
Help us to entrust him to your care and ourselves to your strengthening and healing grace.
In Jesus’ Name we pray.
A Prayer for Those Who Love Mattie
Lord it is all out of order.
Death belongs at the end of a long life not at its beginning.
It is to be the silent tribute to the aged not the violator of youth.
This is all wrong.
But cancer is a cruel enemy of life and love and all that is joyful.
It brings death where it does not belong and it breaks our hearts.
Can it also break our hopes?
Can it destroy more than the physical life it claims?
Can it blind us to your presence in this awful moment?
Make our faith strong enough to answer NO.
Make our faith wiser than our feelings
Deeper than our despair
Sharper than our anger
And more powerful than our sense of helplessness.
Let us thank you for the light you give us in this dark place
The light of companions in their multitudes
The light of promises of stunning hope
The light of strength to bear the unbearable
The light of excruciating love for this child.
Help us to use these to illumine our path, still our fears, open our hearts and heal our violated love. In Jesus’ name we pray.
August 20, 2009
Mattie went to clinic today to have his blood drawn to monitor the vancomycin levels in his blood. He is now up to the therapeutic dosage needed to fight off the bacterial infection he contracted. We were fortunate enough that Jocelyn changed her clinic appointment to today, and was in clinic and very motivated to play with Mattie. Mattie actually was excited to see Jocelyn and asked about her when he got into clinic, because he did not see her right away. Jocelyn, Mattie, and Jenny did a great box project together. They designed an apartment complex with a huge trash shoot. However, no trash shoot is complete without trash. So Mattie had everyone making trash to send down the shoot. Jenny was using a hot glue gun and putting together teeny tiny soup cans and pizza boxes. It was a riot! However, Mattie became upset when a young girl in the clinic decided to play the piano and sing. She was having a good time, which is understandable, but it was sensory overload for Mattie and he started to shut down. In fact, he decided to put paper cups over his ears to block out the noise. This is just another example of how different my family is now from the rest of the oncology patients. We are living almost in a parallel universe, because as death approachs, Peter and I can no longer understand, appreciate, or even fit into the healthy world that we are surrounded by. I snapped some pictures of today's visit to clinic.
So, what is Mattie’s legacy and what have I learned from Mattie and this journey? Here are just a few things:
Life is precious – Mattie’s journey has inspired me to live with more of a carpe diem spirit. Tomorrow isn’t guaranteed, so I don’t wait until tomorrow to hug my kids and wife, tell them I’m proud of them, and that I love them. Life is a gift and while I’m sure to make many mistakes, I don’t want to live with regrets for things I haven’t done or said.
Live in the moment – I’ve really tried to be more present in the moment. Allowing my mind to drift too far into the future seems to bring unnecessary anxiety, so I’ve tried to sharpen my senses and really focus my lens on what’s happening in the now, and it makes a difference – being a better listener, appreciating a smile, enjoying laughter…
Cherish relationships – When trivial matters are put aside and life is boiled down to what is most meaningful, it’s our relationships that matter the most. This is abundantly clear in your relationships with Mattie and with each other. I hope to continue to invest in my cherished relationships, because in the end, this is what life is all about.
The human capacity for goodness – While we all wish there was never a need for a Mattie blog, the outpouring of love and support has been a refreshing blast of people’s willingness and desire to reach out to those in need. There is not adequate room to list all the amazing people and deeds from this journey but the extraordinary efforts of Ann Henshaw (and family); the doctors, nurses, and child life specialists who continuously go above and beyond the call of duty; the meal providers; the fundraisers; the countless prayer vigils; the Lego store that opens after business hours…all incredible acts of kindness.
In closing, I just want to say how much I have admired your tenacity in this battle with a terrible disease. You have fought like hell every inch of the way and given every ounce of your beings to give Mattie a chance at recovery and a longer life, and when that was no longer an option, I think you have made the right choice to manage his pain as best as possible and cherish the time that you have left with him. I pray that within the many tough days that lie ahead, there will be room for moments for peace, rest, laughter, and cherishing the sparkle in Mattie’s smile that we are all so familiar with. Please know that as you wade into these unfamiliar waters, you are not alone. There is an entire community supporting you and willing to do whatever is needed in the present moment and beyond…after all, we have a legacy to uphold. Peace be with you, Bob #2"
August 19, 2009
August 18, 2009
When Tad sent me Mr. Rogers' quote, it immediately spoke to me, almost as if this quote was written with our situation in mind. I worry deeply about talking to Mattie about his terminal condition. It is not a question of will this discussion happen, it is a matter of when will this discussion happen. Part of being human is to ask questions about death and dying. However, this "mentionable" seems a little more unnatural coming out of the mouth of a seven year old. None the less this mentionable will have to become not only manageable but explainable. I do agree with Mr. Rogers wholeheartedly though, that with trust and love anything is possible. I have observed this without a doubt during Mattie's treatment. Mattie has an unconditional amount of trust and love for Peter and I, as is evident in his willingness to undergo all the testing, surgeries, and treatments he endured. Even after a year of torture, he is still putting up with whatever we ask him to, IVs at home and oxygen tanks within his bedroom. Talking about Mattie's death with him may be the hardest thing I will ever have to do in the near future, but I must take comfort that our trust and love for each other will be the force that once again carries us through the unthinkable.
Mattie had a more peaceful night of sleep last night, in the sense that he wasn't screaming in pain. However, he was up every two hours needing to go to the bathroom or needing something to drink or just plain reassurance. Mattie landed up taking two naps today. Totally unheard of, but the tell tale sign to us that cancer is taking over Mattie's body. Keep in mind that even through chemotherapy, Mattie rarely napped! It did not slow him down a bit.
When Mattie woke up, he was in less than a pleasant mood. To perk him up we gave him several gifts to open that friends had sent him. The first package was from a colleague of Peter's who is working in Africa. She sent him a lovely postcard and lots of drawings and messages from children living in the village she is working in. I normally try to post more upbeat pictures of Mattie, but I feel the picture on the left captures the Mattie that Peter and and I see and deal with all day. Mattie was happy on some level to open the gifts, but he is extremely tired, has nausea, and pain at times, which take its toll out of him.
As I am writing the blog tonight, Mattie and Peter are building a special Lego set that Peter ordered for Mattie. Something from the Indiana Jones series. In the picture you can see Mattie is on oxygen, something he needed for most of today. Mattie has little energy these days, and was building for about 30 minutes, but is taking another cat nap right now. We also reduced Mattie's fentanyl pain patch today from the 25mcg concentration to the 12mcg concentration, because I was concerned that he looked very groggy and in a fog yesterday. However, today he is experiencing a great deal of pain, so we had to put the 25mcg patch back on. All this trial and error is exhausting, and hearing your child in pain is excruciating. However, at 11pm, Peter and I had nothing left in our arsenal to throw at Mattie, other than IV Valium. Though Kathleen did a great job training me on Sunday, I got a little confused about what IV Valium wasn't compatible with in Mattie's central line. So when we are unsure, we just call our great HEM/ONC nurses in the PICU. Sarah Marshall answered the phone and within minutes answered all my questions, and confirmed that I indeed remembered what Kathleen told me correctly. I rather play it safe than sorry, and I am tired now, so I am taking NO chances. Thank you Sarah Marshall for helping me tonight! It is wonderful to have these fine ladies on call. It is our hope that Valium helps Mattie, because he is highly edgy and won't let either one of us, especially Peter right now, out of his sight. So much so, that if we go upstairs for a second, he will be downstairs screaming his head off for us! I realize this is due to his anxiety and his fears, none the less, despite rationalizing this, it is taking a major toll out on our nerves.
I would like to end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "I am hard pressed to think of anything worse than watching one's child suffer. Everything in a parent's heart and soul rebels against not being able to fix what is wrong or at least alleviate the pain your child suffers. That is part of the definition of a parent. I don't understand why this is happening to Mattie but I know your role is to fight as best you can for his comfort and to make his remaining time as meaningful as possible. Of course you have to stand aside emotionally from what is happening; otherwise I think you would scream at the heavens for answers to what you are all going through. I think there will come a point soon where Mattie will ask you what is going to happen; you may want to think that through as best you can ahead of time. No one knows Mattie better than you and Peter, so I am sure that you will find the right words when the time comes. I will continue to reach out to you through my prayers and I (and many others) pray daily for Mattie and for you. I am glad your family is able to come and be with you now and hopefully share a little of the caretaking with you. I hope and pray today is a better day for Mattie."
The second one is from one of Linda's former childlife interns who got to know Mattie very well. Lesley wrote, "On August 6th, Whitney called me in tears to ask if I had checked your blog recently. I could hear the panic and sadness in her voice, and quickly ran to a computer. Reading the blog that day was like being hit with a ton of bricks. Your family has been on my mind and in my prayers constantly. I can imagine the heaviness in your heart as you face the next stage of Mattie's battle. I always had such a strong hope and belief in Mattie. He is one of the strongest and most courageous people I have ever met. My experience as a Child Life Intern at GUH was such an amazing experience and a lot of that was due to the fact that I was lucky enough to meet you, Peter, and Mattie. What an amazing trio! You and Peter are some of the most amazing parents I have ever seen. You went to the end of the world and back to make sure Mattie had the best care, and you fought constantly for his well-being. You are an inspiration to all you meet. The old saying the apple doesn't fall far from the tree could not be truer in Mattie. He is a product of his amazing parents, and has touched SO many people in his short time. I can honestly say I will never ever forget the times I had at Georgetown with Mattie. I love his mischievous manner. My favorite memory with Mattie was his last day in the hospital during Whitney and my internship. It was chaotic with all the packing and the hearing tests, but he kept his spirits up no matter what. When you were talking to the doctors Mattie turned the little office into a playground! Whitney and I would take turns rolling him down the small ramp, and trying to run into one another. The three of us couldn't stop laughing! We all love Mattie, and it doesn't make any sense that he had to deal with this battle. Why do bad things happen to such good people? Its not fair. I know your heart is heavy, and there are no words that can ease your pain, but you should know that Mattie is an incredible human being who will be remembered and loved forever by all who were lucky enough to meet him."
August 17, 2009
Left: Peter helping Mattie learn how to steer his new boat.
As we head into Tuesday, I asked Mattie what he would like to do. I gave him some suggestions, all involving leaving our home. Mattie has made it clear that he doesn't want to leave the house. This saddens me, and I would like to hear more about the feeling behind this demand, but for tonight, I just let that go. I let it go, because he is already anxious and clingy. Peter's mom will be with us tomorrow, and my parents are flying in from Los Angeles tomorrow evening. I am happy Mattie can be surrounded by family, but it is very clear, that Peter and I can't stray far from him as he experiences the toughest and most courageous battle toward the end.
I would like to end tonight's posting with three messages and then a music video. The first message is from my friend, Charlie. Charlie wrote, "I am not sure what Mattie's mission is but he certainly has touched me and so many others and made us far more appreciative of what we have and sensitive to those who suffer. He's also strengthened my belief that relationships are what count, they are what make us "wealthy" and that all the money in the world leaves one in poverty if you have no one to love and share with.I am grateful that Kathleen was "on point" on Sunday and was able to foresee the issue with the pump and the central line before it happened. That was great and indicative of the level of caring and concern you've seen all along from the HEM/ONC nurses. I know you are relieved to be home with Mattie and I just hope the pain subsides and he is able to relax and perhaps even eat something soon. I do agree with you about continuing the PT for as long as Mattie can do it; young bodies were made to move and if he doesn't get any exercise he will have even more difficulty relaxing to sleep or rest. There is a growing movement to do a daily prayer at 7PM; I hope you feel the warmth of our loving thoughts surround you and your family each night. I will continue to pray for pain free days for Mattie and strength for you and Peter."
The second message is from a close family friend. Kathleen wrote, "Your fellow RCC Mom said it well, but I saw what you wrote about needing our prayers more than ever, I am here, and I am praying, and asking others as well. you both could probably benefit to be taken care of yourselves for a month or more. I wish I could help, I pray for a miracle. You have more strength, courage and determination in you than anyone I have ever known. Maybe you were supposed to be a Nurse, well I guess all Mothers are aren't they, but you are showing so many people how to be strong, I wonder if you realize how you are affecting others. How Mattie, all of you are affecting so many. I want to say so many things, but they cant come out as they are attached to my heart, where I am keeping all of you in prayer and in God's light."
The final message is from my mom. My mom wrote, "I've thought about the question posed at the special prayer service for Mattie's helpers this week. What is Mattie's legacy? It is a complicated question because it can be addressed in many ways. My first impulsive response is to think of an ellipse which requires two focal points to generate its' beautiful curvaceous shape and to keep one's position on its elegant surface. All who knew and read Mattie's personal struggle against cancer were forever caught up in the path created by its two focal points: 1. Mattie, and 2. Vicki and Peter. All who have been touched by their combined focal power have been transfixed by the unfolding of Mattie's story of courage, sensitivity and maturity and have been compelled to do their part in keeping the dream alive in spite of the odds. The medical drama that placed them at the center of the action attached itself to our hearts by their aura of love, commitment, trust and compassion that they demonstrated for each other even in the most challenging of circumstances. As in all human understanding, we have transferred their example to our own lives in the process, allowing us to remain firmly on that beautiful ellipse created for us by the powerful focal points of Mattie and Vicki and Peter who together produced a series of higher ideals for us to live by through their actions over the last year. God Bless Mattie, See you tomorrow."
As many of you know, there have been times throughout the year where I have posted music videos on the blog to capture the feelings and emotions running through my mind. The pending loss of Mattie is enormously overwhelming for both Peter and myself, and when I reflect on this, Kenny Chesney's song entitled, "There Goes My Life" came to mind. Yes the context of the song is quite different from the life altering world I live in, though the words in the song ring true...."There goes my life, my future, my everything!"
August 16, 2009
6) PCA pump (IV morphine): connected to Mattie's central line 24 hours a day!
This afternoon, while in the hospital, Mattie was visited by his Aunt Lisa, Uncle Chris (Peter's brother), and his cousins, Nat, Sydney, and Will. Mattie had a good time with them, and Mattie particularly liked the gifts they gave him. One was a car that he could take apart and put back together, and the other item he really liked was a three dimensional wooden helicopter puzzle. In fact, everyone worked on this helicopter today, and it was a good activity for Mattie, and helped him stay engaged with his cousins. I was fortunate that Nat and Sydney took some pictures for me today on my camera. I was just so tired, but I am happy they captured the afternoon.
As we head into Monday, Mattie goes back to clinic for a blood test. However, he was supposed to have a physical therapy session in the afternoon, and I cancelled it. None of us are in any state for this. Perhaps will we go back to this on Tuesday. I could cancel PT altogether, but I want Mattie to feel like he is working toward something, as long as he has the physical strength to do this. Peter's mom came into town tonight, and will be with us for two days. So it is my hope that an extra pair of hands will help lighten the load. But I am also aware of the fact that Mattie is scared and clingy now, so I know our presence is crucial to stabilize his mood. We have needed your thoughts and prayers all year long, but it seems to me we need them now more than ever before. Seeing your child dying before your eyes takes a level of courage, love, and strength that is almost indescribable.
I end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am so sorry you had to go back the hospital on Saturday but you clearly made the right decision. I loved your comment that "Saturday was not the day we hoped for", what an understatement that is. It must have been frustrating, frightening, anxiety provoking and infuriating all rolled into one that you were unable to get the medication and relief for Mattie. I am grateful that it seems Mattie had a good, peaceful night on Saturday (and hopefully you did as well) in the hospital and that they were able to deal with his medical issues promptly. I am praying that you can solve the situation with Mattie's pain, anxiety and nausea so that you can return home for some family time. I will continue to pray and I am still getting emails from both the Dept of Defense transporters and the Lafayette Alumni group that they are praying daily for Mattie and for your family."
The second message is from a fellow RCC mom. Kathy wrote, "I've been reading your blog daily and have wanted to write for a very long time. I'm not very good at expressing myself so I put it off until now. I know that you've received many emails of late-words of encouragement from people who love and care about you all. We all feel so lost and don't know what to do with ourselves. We hope that your pain will be eased a little by some kind words -and by writing, it helps us to cope too. A few weeks ago I was working with a new , inexperienced nurse. She was crying because her critically ill patient was more than likely going to pass away on our shift. Being in charge on our floor, I spoke with her and gave her a big hug. I told her (as an old experienced nurse)that usually when our patients die, its their time. We've done everything that we can...all we can do now is make them comfortable and support them and their families as much as possible. Now this past week I read your news and realize that its easy for me to feel the way I feel about adults who have lived their lives-who are elderly or maybe have made poor choices. Its hard to say that we've done everything that we can for a sweet little seven year old boy. I'm around death and dying all the time. Sometimes I feel as if I've come to terms with it all...other times I wonder if I have a hardened ,unfeeling heart. Why am I so excepting of it? I know that its a whole different ball game when it involves people that you care about. It just doesn't seem right or fair. People often wonder how I can do the job that I do...it must be so hard. Hard is what you're doing every minute of every day. My job is a daily reminder to cherish the ones you love. I tell (and show) my husband and kids that I love them all the time. Your blog, your life- is a daily reminder too. I thought of you and Mattie the other day when I was holding Seamus' hand. You had recently wrote about how you and Mattie had held hands and how much it meant to you. Know that you are touching so many people. I pray that you get Mattie's pain under control soon and that you can get him back home asap. There is nothing worse that watching people suffer. You feel so helpless. I can't imagine it being your child. You guys are awesome parents...and have done an outstanding job advocating for Mattie and meeting all of his needs. I pray that Mattie is pain free soon and that you will have enjoyable, peaceful days ahead. God Bless you all Vicki."