Wednesday, August 19, 2009

Wednesday, August 19, 2009

Quote of the day: "Time is a companion that goes with us on a journey. It reminds us to cherish each moment, because it will never come again. What we leave behind is not as important as how we have lived." ~ Patrick Stuart

Mattie is slowly dwindling right before our eyes. In fact, there is a dramatic difference in Mattie's energy, breathing, and stamina in just one week! He is unable to make it through any point during the day without oxygen. He also takes multiple naps during the day, and we can tell when naps are about to happen, because his eye lids get so droopy, he can bearly keep his head up. Though he fights sleep, in the end, the exhaustion always wins out. It is during these down times, I want to literally pull the cancer out of his body and do battle with it head on. Clearly, chemotherapy and surgery couldn't do it, and all I can say is osteosarcoma is lucky that it attacks the body on the inside, because if it could be seen, I imagine all osteo parents would bomb the hell out of it.

Despite Mattie being so tired today, he did have a full day. My parents greeted him this morning, and I prepared them for the fact that Mattie may not want to have anything to do with them. However, when they arrived, Mattie got up off the couch, climbed onto the floor, and was ready to play. My parents created a game called, Captain Mattie, many years ago, and each time they visit, the game just picks up from where they left off. In true Mattie fashion, he was eager to play. He wasn't as animated, but definitely was engaged. My parents spent a couple of hours with Mattie, and then were invited out to lunch by Susan D. Susan is Mattie's director of school counseling at SSSAS. My parents are very fond of Susan, and I appreciate her kindness and support she has expressed to my parents this year. Susan also brought Peter and I lunch, and gave Mattie a wonderful motor boat to add to his pool! Thanks Susan!

While my parents were out, Mattie did take a nap and then when he woke up we played a car racing game together on the floor. Mattie couldn't move around on the floor, so I did the moving for both of us. Mattie is unable to move because he just doesn't have the energy, but also because he is hooked up to so many IVs, that it makes moving challenging. I also encouraged Peter to get out of the house today to get a hair cut and clear his head. I am glad he did this, and not that it improved things dramatically, but breaks are very necessary to be able to make it through our long, tiring, and heartbreaking days.

Left: Mattie with my mom!

When my parents came back this afternoon, after picking up another anti-emetic for Mattie at the pharmacy, they continued to play with Mattie. While they were doing this, I sat outside on the deck and read the articles that Dr. Synder sent me regarding chemotherapy options for Mattie. There are two options being presented to us: 1) gemcitabine and docetaxel, and 2) oral VP-16 (etoposide). What you need to understand is neither option are used for a cure, but instead to treat and ease pain and hopefully slow down the progression of the disease. None the less, the data on both options is minimal, and in many cases is only preventing the inevitable. Peter and I discussed the first option, which is chemotherapy with side effects such as neutropenia, fluid retention in the lungs, and bleeding. Because of Mattie's weakened condition, we can't see putting him through this in good consciousness. The second option is far LESS invasive. It involves taking a pill for twenty days (oral VP-16), and there are no known side effects. In our opinion this is worth a shot, even at the hope it eases Mattie's pain and therefore can increase his time with us. On Thursday, Mattie has a clinic appointment to check his vancomycin level in his blood, and we will follow up with Dr. Synder regarding these options then.

Mattie had a visit from JJ, our resident Jack Russell Terrier. It is funny, normally JJ needs to be on a leash when he is near Mattie. But today JJ walked into our home, and was very calm and obedient around Mattie. It is amazing how perceptive animals are, and I believe on some level JJ really does care about Mattie! After all they practically grew up together!

This evening Mattie wanted to ride Speedy Red. Thank goodness Speedy Red still provides Mattie with a level of joy and fun. He wanted to show my parents how well he could drive, and frankly Mattie is a natural. He took to driving like a fish takes to water. We snapped some pictures of Mattie outside. Thank goodness Speedy Red has a trunk that can handle IVs and an oxygen tank!

Left: Vicki and Mattie!

Right: As Mattie is getting more physically exhausted, he is unable to turn the steering wheel, especially when my weight is in the car. So when I got out of the car, Mattie was able to drive for quite a long period of time.

Left and Right: What you can't see in these pictures, is that Mattie is chasing either Peter or I around with his car. Today was a hot day, but that did not stop Peter and I from racing around, especially if that meant it would bring a smile to Mattie's face. Somehow running your parents over with a car can be very entertaining!

Mattie received a very large gift today from his friend, Kazu. Kazu and Mattie met the summer before they started kindergarten together. I still remember the day I met Kazu. Mattie and Kazu were enrolled in summer camp together at SSSAS. Dropping Mattie off was intimidating for me, mainly because he clung to my leg. I quickly assessed that Mattie needed a buddy to be paired up with to make this camp experience positive. So one morning I walked Mattie into the camp classroom, and I spotted Kazu who hadn't paired up with anyone yet. So literally I dragged Mattie over to Kazu and introduced them to each other, and it seems to me from that point on, they united together in camp and have been friends ever since. Kazu gave Mattie a huge Lego set tonight. We can't thank the Ferris family enough for such an amazing and generous gift. I am happy to report that Legos still make Mattie happy and we feel very blessed to have friends like you!

We want to thank the Pisano family tonight for a lovely home cooked dinner. Your cookies got me through numerous Speedy Red laps that I had to run!

I am not feeling well tonight, so I am ending this posting now. But before I do, I would like to share four messages I received today and another music video. The first message is from my friend, Charlie. Charlie wrote, "One day marches into another and it must be incredibly difficult to wish for an end to exhaustion as that would mean that Mattie is gone from your lives. I think most of us talk about palliative care quite unknowing what it really means and what it requires of those who are asked to do it. I stand in awe of the superhuman effort that you and Peter have so far managed but I worry for you as well. I am glad you thought to check in with Sarah at Georgetown because managing the level of medications that you are, normally requires a professional (you should have an honorary RN by now) but the level of exhaustion you are facing can cause even the best trained person to make an error. I hope you are able to sit down and work something out with Mattie that will allow you to do the things you need to so that your family can go on functioning. I will continue to pray that you see more Mattie "sunshine" to help you in the remaining cloudy days ahead."

The second message is from one of Mattie's teachers, his technology teacher. Many of you may recall that Mary visited and worked with Mattie multiple times this year both at home and in the hospital. She is a special and beautiful person, and we are privileged to have the opportunity to get to know her this year. Mary R. wrote, "My heart is heavy for you but wanted to share with you how great a gift Mattie has been to me and to others. He always walked around school with the biggest of smiles which is a reflection of you and how happy a child he has always been. He has the best outlook on life which is instilled to children by their parents and his love of trivia facts always made for a fun and learning conversation. Mattie is an amazing child and he has made a difference in my life. He has given me a gift that I will carry with me the rest of my life.....to walk with a smile...it makes others smile too. To keep a positive outlook on life...it will make others look up too and to always have something fun and interesting to share. It connects you to people. Thank you for sharing Mattie with all of us and with especially me."

The third message is from my colleague and friend. Nancy wrote, "The blog has become an important ritual for many of us. Whether one checks in once in awhile or everyday, it provides everyone with insight and information about Mattie and the family. Although, none of us can really know what this last year has been like for all of you, we sit by trying to come up with ways to respond and support each of you. The Team Mattie has been one such instrument. Ann is such a dear friend and I am glad that you have her. She is aware of what you need even when you might not give yourself permission to do it yourself. Out of need, new ideas can flourish. And that is what the stories about Mattie will be. What a wonderful healing tool for Peter and you, A Book about Mattie! I wish that I had a specific Mattie story to tell for your memory, yet, my only knowledge of Mattie comes from your experiences. As someone wrote last night, the bond between a parent and child is something special. Even when you think that you don't have a drop more to give, you do. The only reason that Mattie has sustained so much is BECAUSE of his Mommy and Daddy. G-d be with you all during this days of great struggle.I've been thinking about the first part of yesterday's blog. Americans, especially, have a difficult time dealing with death and dying. It is a taboo subject for many. Children, based on stories reported, are very intuitive about this . On some level Mattie already knows that things are different and I believe understands that his time on earth is limited. You will find the right time and words to begin this heart wrenching journey with him. I, too, found a quote this morning. It helped make sense to me when I needed answers and control over an impossible situation with Mom."Not knowing was hard; knowing was harder" ~ Toni Morrison....There is a post script: We often have to get to "harder" in order to resolve. Vicki, you have been such an inspiration to so many. I wish there was something more that I could do, physically, to help you. Mattie and each of you are in my prayers and more importantly, my heart. "

The final message is from one of my former teaching assistants. Liz wrote, "I continue to follow Mattie's blog and just wanted to let you know my thoughts and prayers are almost entirely focused in your direction these days. I don't think there is much I can say that hasn't been captured by those nearest and dearest you. I am amazed at how well everyone is putting their thoughts into words with this situation--I have sat in front of my keyboard a number of times trying to pen something meaningful but usually end up feeling like what I write is too simplistic to accurately capture the emotion behind the words. As a new parent, I do feel like I have a new appreciation for how deep your sadness must run. I read the message you posted from Rich earlier in the week and how he essentially said reading your blog has enhanced his relationship with Claire. This resonated with me so much that I think my heart was ringing. I look at my daughter and value *every second* I am able to spend with her. I find joy in the simplest things-- cooing, laughter, the smile I get when I pick her up, and even changing her diaper! And then I remind myself to soak it in because life can change in a second and nothing is guaranteed. I only met Mattie once (back in the day when I was TA'ing for you) but his legacy to me will be one of love. I think any parent who knows about Mattie hugs their child a bit harder and a bit longer each night. As a new mom, I am simply in awe of you. I know you are focused on Mattie's legacy but I believe yours will also be one of love."

As I am sure many of you can gather by now, I relate music to my life. In fact when I am unable to communicate my emotions, especially during times of such intense stress such as now, I can always turn to music to help me figure things out. I share tonight a song from the Musical Wicked, entitled, "For Good." To me, Mattie has changed my life for good. There are two particular verses in the song that speak to me and they are, "because I knew you, I have been changed for good," and "you will be with me like a hand print on my heart."

http://www.youtube.com/watch?v=CQJaZO2nfGg&feature=related