Monday, August 24, 2009

Monday, August 24, 2009

This painting was created by Mattie. I am going to try to post a picture of a Mattie creation each night for you to enjoy! You will see he has been very prolific just this year alone. Also notice the beautiful paper flowers below the painting. He made these for me to celebrate Mother's day!

Quote of the day: "Love is stronger than death even though it can't stop death from happening, but no matter how hard death tries, it can't separate people from love. It can't take away our memories either. In the end, life is stronger than death." Anonymous

Sleeping has become even more challenging with Mattie now. I have a feeling all the pain medications he is on is causing him to have nightmares and to talk in his sleep. None the less, it makes for a very troubling night to lie there and listen to what is coming out of Mattie's mouth. I am happy to report that Mattie did NOT need oxygen again today. I am thrilled, two days in a row! None the less, he is very weak, and did not ride Speedy Red for the fourth day in a row! In addition, he can't even keep water down. Whatever he attempts to consume gets vomited up. Despite being on powerful anti-emetics, he is still vomiting. I sent Mattie's doctor an e-mail today, because I do not know how on earth Mattie will begin oral VP-16 this week. This is an oral chemotherapy he would swallow once a day for 20 days. Frankly, though this would be a great thing to try, I don't know how I will get Mattie to actually take it! I ask you to send all your positive thoughts and prayers our way regarding the consumption of VP-16.

Mattie spent a great deal of the morning in severe pain. His Fentanyl pain patches were losing their effectiveness, and needed to be replaced today. What this showed us was that Mattie is still in intense pain, and the IV morphine alone can not manage the pain alone. So we immediately changed the patches, and thankfully within a couple of hours, the screaming and crying began to stop. It was heart wrenching to listen to this. After a few hours of this, you either want to pull your hair out, or somehow make this all disappear from your consciousness. Mattie did not come downstairs today until 1pm. He just did not feel like leaving his bed.

When Mattie came downstairs, he was eager to build a Lego set with Peter. He became very focused, and thank goodness Legos still capture Mattie's attention! While they were playing, I got myself dressed and then prepared lunch. Thank you Susan S. for offering to bring us lunch today. We value your support.

As many of you know, Ann is out of town this week, and when she is gone, Alison (our Mattie Fund manager and communications director for Team Mattie) takes over coordinating our needs. Alison left me a very funny message today, which got me to chuckle. This is virtually hard to do these days, but Alison has a witty sense of humor which I have always appreciated from the first day we started working together. Thank you Alison for your willingness to always help out in a moment's notice. It means a great deal to Peter and I.

I also received a very touching and gracious e-mail today from Peter's boss at Voxiva. Grant wrote directly to me. Grant is an avid blog follower, and wanted to lend support to us in some way. So in his message he let me know that Voxiva is completely behind our family and understands what a devastating time this is for us. Grant let me know that the company has put Peter on Compassionate Leave, and they do not expect him to come to work right now, so that he can spend as much time with Mattie before Osteosarcoma takes over his body. In addition, Grant let me know that Peter's job was not in jeopardy. Needless to say, in the midst of this crisis, it was an amazing gift to receive Grant's e-mail and to feel his level of support and compassion. Grant, we are grateful and appreciative, and I won't forget this level of commitment and kindness toward my family.

My parents came over this afternoon and played the Captain Mattie game for over an hour. In fact, now Mattie's tooth has become part of the play scene. The tooth has magical powers! If only this were true! However, as the afternoon wore on, Mattie was getting tired, and then had a vomiting fit. That alone wiped him out. I helped him to calm down, and eventually he fell asleep on Peter. While Mattie was resting, I went to visit my friend, Junko, who was admitted for a night at the George Washington University Hospital. Just so you can put things into context, Junko's son is Kazu, and Kazu and Mattie met at SSSAS' summer camp and became good friends after that experience. Junko and her husband, Tad, have done so much for us this year, and have become dear friends. There was no way I was not going to visit Junko in the hospital, assuming she was up to see visitors today. So this afternoon, I had the pleasure of visiting with Junko and Tad and sitting by her side and finding out how she was feeling. I could tell Junko was very touched to see me, and we spoke a lot about Mattie. I am beginning to have some understanding for the profound effect Mattie is having on my friends' lives. I am not sure why this hasn't hit me before, but I am allowing this to be absorbed in. Despite the fact that Junko wasn't feeling well, she is an extremely gracious and loving individual, who sat there more concerned for me than for herself. I guess that is the sign of a true friend. Junko's doctor came to visit her, and he was a delightful fellow, but I couldn't help myself, and I jumped into their conversation. I guess I am so used to fighting and advocating in this system, that it is second nature to me. I hope Junko and Tad understood my motivation was to help only!

When I got home, Mattie was beginning to awake. We said good-bye to my parents, and then Mattie and I started to play on his Nintendo DS. I think Mattie gets a sheer joy out of watching how bad I am at this. Of course, I have perfected the art of losing this year, so if I actually had to play to win, I may have a problem! Mattie and I played for a while, while Peter had dinner, and then Peter took over and played for quite a while with Mattie. Mattie and Peter teamed up together, and Mattie won all sorts of racing car cups, which he was very excited about. We want to thank the McCleary family for a wonderful home cooked dinner. We loved your chicken and apricot sauce. There is nothing like an apricot. Thank you for a lovely dinner and for the tasty petit fours. But a special thanks for the beautiful sunflowers. Clearly you read on the blog how much I enjoyed giving them to Ann's mom recently. To me they are just the picture of happiness, and Lord knows we could use some happiness in our lives right now. Thank you Leslie for your thoughtfulness!

As Tuesday comes around, my lifetime friend, Karen, is coming to visit us for four days. Karen is very familiar with cancer, as she lost her cousin to this horrible disease, and helped care for her cousin in her final days. None the less, our life is so chaotic, and Mattie is so fragile, we want to make this visit as pleasant as possible for Mattie.

I would like to end tonight's posting with four messages. The first message is from my friend, Charlie. Charlie wrote, "Night terrors are awful. I think they are worse for the person who observes them than the person who has them since normally, the dreamer doesn't remember but the observer (usually the parent) is in a state of panic listening to the sleeper. These never failed to wake me from a sound sleep and put me at the side of our son's bed, frantically trying to rouse him, often to find he did not remember anything. So my heart goes out to you, they are horrible but not hurtful. I don't believe the one above would send angels in a way that would cause night terrors. I believe if/when Mattie sees angels, they will offer him wings and to teach him to fly and knowing Mattie, if he screams, it will be with happy excitement, not fear.I am glad you had a good meeting with Rev. Greenfield and that he did not belittle your feelings and fears. I assumed he was someone with an open heart and mind, I could not imagine you continuing a religious relationship with someone who did not share this way of thinking with you.I do want to share my thoughts about you and Peter as parents. I hear what you are saying about being failures for not being able to protect your child from this horrible disease. However, if there were two parents who tried harder, sacrificed more, loved deeper, I have yet to meet them. You made Mattie's time here the best it could be, you loved him with everything you have and protected him from hurts both intentional and unintentional by medical staff and passersby. You've left those of us following the blog in awe of your determination to do all that could be done for Mattie. If there is failure here, it is not yours. You are in my prayers as always."

The second message is from one of our wonderful HEM/ONC nurses at Georgetown. Laura wrote, "I am so sorry it has taken me so long to email you. I was never exactly sure what to say or how to say it, not that I am trying to excuse the delay. I have thought about the two of you and Mattie each and everyday. I know that I have not had the opportunity to take care of Mattie a ton over this past year, but each and every time I have, I have been amazed. I cannot even begin to imagine having a child with cancer. What amazes me so much, is the love I saw between both of you and Mattie. It was obvious that his well-being was your priority. You were both constantly involved in Mattie's care, asking intelligent questions, advocating for his treatment, and most of all making sure he was okay. Please know that you have constant nursing support, that everyone is a phone call or email away. Besides nursing and medical support, please do not hesitate to contact me, even though I don't know you as well as some of the other nurses. Whether it is running errands, doing laundry, cleaning, talking, cooking... anything I can do to help, I would love to. You two are incredible people and parents to a wonderful boy.I'll be thinking of you both, Mattie, your family and friends...Please let me know if I can do anything."

The third message is from a friend of my sister-in-law's. Alex wrote, "I am a friend of Lisa and Chris' from Beaver. Though I no longer teach with Lisa, we are good friends and she has shared your journey with me, and of course, I have read your blog constantly. Of course, so many times I have wanted to write--always waiting for the right time (is there such a thing?), and not surprisingly, in what you have written this morning, I have found the invitation. (Warning: I am also a Congregational minister!) I was struck by your ruminations on what's next for Mattie--where is he going--is he dreaming or having nightmares about the angels coming to get him, and will St. Peter and company "get it" when they receive this gift of Mattie. While you know as well as I that we cannot know all of the answers, I feel in my heart and soul that they already "get" Mattie--why else would they come for him after so little time with you? They need him--not more than you do--no loving God would presume that, but perhaps it is something that cannot be quantified--the need in heaven versus our need for Mattie here on earth, that is. Please know that there is a place for him there because they have been preparing it as they have watched you and been with you-even on the most lonesome of days and nights-because Mattie is so special to you and t this world, their place for him has to be the same; they will take care of him and his vocation though short lived with us here will be continued elsewhere. They are ready for him because they have heard your worried and dreams for him and they will continue to listen even when his body is taken from you. They are trying to get you ready through Mattie, but there is no right way to do this. My family--who has read along with me at different points, are grateful for all that you three have taught us about living and dying and being and loving. You cannot know now, but I hope that as your days go on, you will know that you have all changed our lives forever. Mattie knows, I am sure of it, and i am even more certain that St. Peter and all those who will welcome and celebrate Mattie when he arrives know too. May you know peace in the coming days."

The final message is from a fellow SSSAS parent. Kathryn is a cancer survivor and has reached out to me throughout this year. Thank you Kathryn! Kathryn wrote, "I have been out of town and have just learned your devastating news about Mattie's prognosis. I went to my son, Matt, who sold goods at the bake sale for Mattie, and just completely broke down. I cannot tell you the depth of my sorrow for Mattie, you, and Peter. I knew it was a battle, but like you, I had such hope. Having the two of you as parents and the absolutely best advocates anyone could imagine, I believed Mattie had the odds in his favor. But cancer is a *itch - pure and simple - and the disease has its own mind, as you have said. It is ravaging and horrible and must be eradicated in all its forms. It is a tragedy beyond measure that it is still so powerful, despite the improvements in treatment. I am working hard on the breast cancer front, and will further strongly and vociferously support any efforts on Mattie's disease as well as on the brain cancer affecting Holden and graduated senior Natalie. But most importantly now, I am here for you, Mattie, and Peter. You have my prayers, my tears, my thoughts and my words that I will do anything you need. I will check on this with Team Mattie. I know it is painful to remember the Sloan Kettering advice. But my hope and prayer is that you remember and trust why you chose the course of action which gave Mattie a chance to have a long life. You are such a loving, caring and passionate person and parent that I can't imagine you doing anything else but taking every possible effort to save your son's life, as you are making every effort now to minimize his pain. That is who you are and how much you love your wonderfully special son. Mattie is such a gift to all of us - a trusting, loving and exceptionally courageous child who has endured more than most adults in a lifetime. He is so like his parents who have been fighting for him every step of the way through all of the reversals, medical system successes and failures with a constancy that is truly remarkable. You are an amazing person, Vicki, who has been tested at every level by this disease. I know now isn't the time for you to see that but I really hope you can in time. You have never lost your focus on doing your very best for Mattie. I wanted to write you about this after having had the great pleasure of meeting you and your mother at the Gehr's house. I felt such a spiritual quality about you - a deep inner strength that has enabled you to persist when others would have despaired. I am not saying that you haven't felt the horrible effects of Mattíe's disease but you have stayed upright and fighting, all the while concerned about how best to take care of Mattie (amidst reminders to remember yourself). Your ability to write such a candid and powerful blog about the past year just demonstrates that strength tenfold. You have let us into your very private process and we are forever changed because of it. You have touched so many lives with your battle and those many are so distraught to hear Mattie's prognosis. Losing a child has got to be one of the lowest circles of hell on earth. Deciding how to talk to Mattie about his terminal diagnosis is close but I share the perception of those who think he might have an inkling on some level, like he knew the bone bugs were back in his stomach. I just want you to know that I am with you, that we all are with you, aching for your heart wrenching struggle. I hope you can take some comfort in the very close relationship you have with Mattie. That is so special and unique in light of all you have gone through as a family - and perhaps because of it, too. I was so touched to read about your time with him in the garden when he wanted to talk about being a baby. Such a wonderful moment of light in the darkness. May there be many more before Mattie's time comes. I am holding onto my Italian rosary (similar to the one I got for you all at the Vatican in Rome) and thinking of you, Mattie and Peter. I will certainly send him the most positive healing and comforting messages at 7:00 pm as well."