Tuesday, August 18, 2009

Tuesday, August 18, 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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