Thursday, August 20, 2009

Thursday, August 20, 2009

Quotes of the day (Thanks Tad and Charlie): “If only you could sense how important you are to the lives of those you meet; how important you can be to people you may never even dream of. There is something of yourself that you leave at every meeting with another person.” ~ Fred Rogers

"There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go." ~ Author Unknown

Peter stayed with Mattie last night in order to give me a break. I have been reluctant to do this to Peter, since Mattie has been extremely demanding of him during the day. Mattie is going through a Daddy Phase, which I have seen happen a couple of times this year when Mattie is under particular stress. Heightened stress brings about intense anxiety for Mattie, and as a result Mattie really needs both Peter and I to be physically present at all times. I can assure you this form of intense caregiving is overwhelming, all encompassing, and when we reflect on what is happening to Mattie during these intense moments, it is almost too much to bear, tolerate, and accept.

For me, today was a day of sadness. I am not sure what got to me more. The fact that Mattie's body is declining (in fact, just within one week's time, Mattie has become very weak and needs oxygen every hour of the day), Mattie needs periodic naps, or that he really dislikes leaving the house. Just two weeks ago, Mattie could spend six to seven hours in the Lombardi Clinic. Today, after 90 minutes he had it, both physically and mentally. All of this is a constant reminder that Mattie is very sick. If all of these things weren't bad enough, then I reflect on the fact that Mattie will never be returning to his school, he will never learn to read, write, play the piano, play a sport, attend a school dance, join the cub scouts, have a girlfriend, go to college, get married, have a family, and the list goes on. All of these things that we want for our children, have been robbed from Mattie's future, and in essence from our future as well. This is a reality I don't care facing, but in the moments when I am brave enough to go there, it makes me feel directionless and hopeless. Hopeless because I have learned this year that I have very little control over anything in life. This was certainly a very different philosophy than how I have lived my life up to now. But cancer has shown me that there are SO many things beyond our control, and no amount of fighting, advocating, and even love and prayer can change the outcome of things. This is a very sobering reality for me, and perhaps for some of you as well who are on this journey with us.

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.

Left: Mattie and Jocelyn discussing how to transform a cardboard box into a structure. The irony is Mattie has created MANY cardboard box structures while at the hospital this year. Many of these creations were thrown out, after we captured them through photos, because they were just too large to store. But about 10 or 15 of these boxed creations are in Ann's basement. At the time I felt bad doing this to Ann and her house, but now I am so happy we saved these special projects.

Right: Mattie covering his ears, because he did not want to listen to a young girl singing in clinic.

Left: Jocelyn, Jenny, and Mattie! You can see the apartment cardboard box complex they designed, with a large trash shoot tube connected to the building. In fact, Jocelyn is holding up some of the toy trash!

Right: Denise (Mattie's social worker), Jocelyn, and Mattie holding up a styrofoam head. On the head Jocelyn glued pretend hair. Mattie told Jocelyn that he is tired of people feeling his head and his new hair. So Jocelyn decided to make up this head that Mattie can carry around with him. She told him to instruct people to touch the styrofoam head instead of his own. He LIKED that idea a a lot!

Katie, one of Mattie's wonderful HEM/ONC nurses from the PICU came down to clinic to visit Mattie today. Katie is not only a fabulous nurse, but a truly supportive and loving person. Katie e-mails me on a regular basis, and it helps me to see that if I need nursing support, I don't have to stray far, I just need to call the PICU. That is a very empowering feeling in a time when we feel so lost and hopeless.

We took Mattie home today before we ever got to see Dr. Synder, Mattie's oncologist. When we got home, I helped Peter and Mattie get settled, and then went upstairs and took a two hour nap. The emotional toll of all of this is wearing me down physically. Peter played intensely for two straight hours, and naturally this involved Legos. I snapped a picture of them playing with Lego airplanes today!

My parents came to clinic with us for a little while today and then also came over later in the afternoon. However, Mattie was in one of his shut down moods, and only wanted Peter and I to basically interact with him. My parents have become experts now in understanding Mattie's need to do this, certainly it can be hard to experience, but as we all keep reminding ourselves, it is about Mattie now. Whatever works for him is what works for us. Mattie did take a nap on my lap this afternoon as well, and as evening came around, he said he was hungry. He wanted me to make him homemade waffles, which I gladly did. However, after one bite, he threw up. This is so painful to watch someone who is so hungry, and yet can't eat!

I had the opportunity to talk with Dr. Synder tonight on the phone. Mattie's electrolytes are all over the place, and they will need to be adjusted in his TPN nutritional IV supplement this week. In addition, most likely Mattie will need a blood transfusion next week. But Peter and I have consented to start Mattie on an oral chemotherapy drug called, VP-16. This has no known side effects, and it could potentially ease pain and slow down the progression of the disease, maybe. It is worth a try. However, I told Dr. Synder I am opposed to other more aggressive forms of chemotherapy because it not only will prevent the inevitable, but it could make Mattie more physically ill and weaker. I am not electing anything right now that will bring about further suffering upon Mattie. The treatment must be about making Mattie happy and more comfortable, and not about any of my own desires to prolong his life. Dr. Synder understood my position and honored that. So Mattie will begin the oral chemotherapy next Thursday, and will also undergo a CT scan next Thursday so we can see what the tumors look like before the start of VP-16.

We would like to thank the Frye family for an incredibly generous dinner tonight and support. Julie we thank you mom as well for helping to make our evening so special. Mattie loved the Space Police Lego set. Thank you for thinking of him and for the special pastries as well!

I would like to end tonight's posting with five messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I am glad Mattie is home with you and that he is able to enjoy some of his playthings even though his energy level is clearly waning. I hope you are able to see some results from the medication and that Mattie will get some additional pain free time with you. It is clear that writing about Mattie's impending departure from your lives is almost impossible; your grief whispers in each line louder than shouting and my heart cries in response. There is no solution here; I can offer nothing except my presence as a witness and a friend. I hold you and yours gently in my thoughts today and every day. The virtual prayer group will continue to pray each evening for pain free days to come."

The second message is from a fellow SSSAS parent and friend, Tamra. Tamra wrote, "Each night or morning that i read a new blog entry, there is a great reminder that there is so much goodness in the world yet it also can be fleeting and fragile. I am mesmerized by the beautiful softness of Mattie's face..the freckles, the tender eyes, the gentle hair sprouting, the small but brilliant hands that can build anything, drive a care, navigate a boat, and a mind that reveals both hilarious dialogue and profound and loving thoughts..an imagination that transcends brilliance.. the presence of a seasoned performer when he is in magician mode. You and Pete have not only given him courage and wings, but you have taught him to soar in every situation..the love of parents is gift beyond words, but the heart knows of its true meaning...for today, we wish you tender times with some perhaps a sprinkling of humor, fun and some pleasant time on the deck."

The third message is from our friend, Coach Dave. Dave is the head football coach at Mattie's school. Coach Dave wrote, "I just returned from Rhode Island and am in the middle of coaching meetings. We begin practice on Saturday. I am thinking about you, Peter and Mattie. I read the blog and my heart is breaking. You have the most wonderful family and I can’t even begin to understand why this is happening. He is such an amazing boy and you and Peter are incredible. I also wish we could pull out that cancer and beat the * out of it. Ev and I are thinking about you all non-stop. Please tell Mattie that all of the football coaches say hello and that he is our little champion. His courage is extraordinary. My best thoughts, wishes and prayers."

The fourth message is from Mattie's former babysitter Emily W. Emily sent me this Mattieism, and I wanted to share it with all of you! Thanks Emily. Emily wrote, "I babysat Mattie for the 2 years that I lived in D.C. and developed a very special relationship with Mattie. I have many memories and stories of my babysitting adventures with Mattie but for right now, one stands out very strongly....I was stung by a bee in the summer of 2007 and because I am allergic, the calf of my right leg became very swollen and infected. The day after I was stung I went over to Vicki and Peter's place to babysit Mattie, and Mattie immediately noticed the infection on my leg. He rushed over to Vicki and Peter and asked them how they could help me! The compassion and concern he had for me was unbelievable coming from a 5-year old! Anyway, the following summer (the summer of 2008...approximately one month before Mattie was diagnosed) I came over to babysit Mattie. He wanted to play outside in his blow up pool and so I pulled up a chair and he splashed around. We were splashing each other when Mattie's attention was immediately diverted to a wasp flying over us. I noticed the wasp after seeing Mattie look up and said, "Look at that bee! Be careful!!" Mattie looked up at me and said, "Emily, it's a wasp! Now, don't you remember what happened to you last year!!! You go inside and I'll fight off the bee because we can't have you getting stung again!" The bee/wasp/whatever flew away, but I turned to Mattie when we went inside and said, "Mattie, that was so brave of you! You saved me from the bee! You are my superhero....You are my Mighty Mattie!" From that moment on, I called Mattie my Mighty Mattie. He always seemed to look out for me even before the bee situation but his concern, compassion and genuine caring nature has continued to leave me in awe."

The final message is from a fellow RCC parent and friend. Bob refers to himself as Bob #2, because he knows that Bob Henshaw will always be our Bob #1. Bob wrote, "In solidarity with the army of Mattie supporters and bloggers, I was deeply saddened to read about the spread of Mattie’s cancer. In the past two weeks as this news has begun to sink in, I have thought about your family often and I have tried to reflect and process some of the feelings from this past year’s journey. While the grief of losing Mattie will be profound, and at times feel unbearable, I hope that you and Peter will find moments of comfort in knowing that this journey has taught many of us some very powerful life lessons that will truly change us for the rest of our lives. At last week’s prayer service, we talked about the legacy that Mattie will leave behind. The choice of the word “legacy” was very intentional because the impact of his life and your family’s courageous fight against cancer will transcend an earthly life that will be far too short.

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"