Tonight's picture was taken in October of 2007. This has to be one of my favorite photos of Mattie. I remember taking this photo as if it were yesterday. We took Mattie to Butler's Orchard in Maryland and he rode on a tractor out to a pumpkin patch and literally picked this big cutie right off of its vine! Mattie's big smile I think says it all. He was very proud of his selection. Mattie gravitated to bold and bright colors, orange being one of them! Which is why orange is our official Mattie Miracle Cancer Foundation color.
Quote of the day: Scars have the strange power to remind us that our past is real. ~ Cormac McCarthy
As I mentioned in last night's blog, President Obama has decided NOT to light the White House up in GOLD this month. A petition was signed by many childhood cancer advocates pleading with the President to consider acknowledging childhood cancer awareness in a similar fashion as to how he acknowledges breast cancer awareness in October. In October there is a huge pink ribbon draped over the White House and at night there are pink lights everywhere. Keep in mind that President Obama is the same person who signed the law declaring September as National Childhood Cancer Awareness month. But what does that really mean?! The Internet is AGLOW over his decision to not visually support the gold campaign. Many parents, families, and childhood cancer advocates are disgusted by something that in all reality is a VERY simple gesture and request. A gesture that wouldn't cost much but would be giving recognition and promoting awareness to a national health crisis.
I included a link to an article written by a parent who lost his daughter to cancer. We know Jonathan, he was one of the parents who spoke at the Mattie Miracle Childhood Cancer Psychosocial Symposium on Capitol Hill in March of 2012. This is Jonathan's voice below, but he represents the voice of MANY!
Thanks for Nothing, Mr. President
http://www.huffingtonpost.com/jonathan-agin/thanks-for-nothing-mr-pre_b_3854194.html
Now here is the irony, though Washington, DC (our Nation's capital) is not glowing in GOLD, the city of Boston has risen to the occasion. Check out this video below. The famous Prudential building and the Zakim Bridge in Boston are GLOWING gold for the month of September. Good for Boston!!! Maybe Washington, DC could learn a thing or two from Beantown.
http://www.wcvb.com/health/Pru-Zakim-awash-in-gold-in-honor-of-young-cancer-victims/-/9848730/21749774/-/9fswcez/-/index.html
This proves to be a very challenging weekend for Peter and I as Mattie's fourth anniversary of his death is tomorrow. I knew we needed a plan today, otherwise we would have remained in an absolute funk. So we went on a day trip to Frederick, Maryland. We haven't been to Frederick in 13 years. It is only an hour outside of Washington, DC, but life happens, and many things prevented us from visiting this historic town sooner. When Peter and I got to the town, I did not recognize it at all. In so many ways it lost its beauty, charm, and historic nature. Nonetheless, we made the best out of it, toured the main streets, visited antique stores, and found a lovely restaurant called Firestone's Culinary Tavern. It lived up to its name. Today was a glorious weather day and getting outside, moving around, and staying busy for part of the day was the best things for us to do.
I would like to end tonight's posting with a message from my friend and colleague and then following that, I reposted part of the blog from September 7, 2009. I think it captures what our world looked like four years ago today. It was a day of absolute desperation, fear, pain, and heartache. When I wonder why Peter and I are sometimes the way that we are now, it doesn't take long for me to understand why after reflecting back on my own words. Words which captured our journey from the day of diagnosis forward.
My friend and colleague wrote this to me today. She said, "You, Peter, and Mattie have had and continue to have a LONG reach. Mattie's blog has reach for adolescents, moms, dads, professionals, and many, many people. The Blog should give people pause: be kind, love others, don't be self-centered, give back, give thanks for the moment, tomorrow is not promised, more research needs to be done, everyone should matter, don't assume, have empathy for other, and nothing is guaranteed. I KNOW THAT YOU KNOW ABOUT ALL OF THESE LESSONS. I just hope you know you are still teaching."
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MATTIE'S BLOG --- SEPTEMBER 7, 2009
Our day started out with a sad scene. Mattie's fish, the special gift my parents got Mattie yesterday, died! I knew this was an ominous sign today!
Mattie had a very difficult start to the day. His blood pressure has been dropping and is dangerously low, and he had a coughing fit, which left him gagging and unable to catch his breath. He was deathly scared, and when Dr. Shad and Kathleen (Mattie's outstanding HEM/ONC nurse) saw him, they mobilized into action. In reality what happened next moved so fast, it was almost a blur. Mattie was in minutes being pumped up with pain medications and Versed (for anxiety). Now that I can reflect on the morning, I am so thankful we are in the hospital. Because Mattie couldn't possibly be cared for humanely at home based on the symptoms he is presenting. It is ironic that Mattie seemed to know this, and had a better feeling for his condition and his decline than Peter and I. Once Mattie received all this medication, he asked if I could snuggle with him, which I happily did. However, Mattie is being kept in a comfortable state, so therefore he really isn't talking and spends a lot of time sleeping. The Mattie we knew is NO longer!
Dr. Shad came to the hospital early because she felt that the end was near for Mattie. She stayed at the hospital all day, and we had a great deal of support from the HEM/ONC nurses (Kathleen, Tricia, and Miki). We were also surrounded by our THREE angels today: Ann (our angel of HOPE), Linda (childlife specialist and our angel of caring), and Debbi (our sedation nurse angel). They all came to support us and Mattie. My parents sat with us as well, and this whole scene of watching Mattie slowly dying is heart wrenching and at the same time surreal. How can my healthy, active, bright, and spunky son be dying? I see it happening, but it is SO hard to accept!
Eating wasn't easy for me today, but I had a lot of people around making sure that I actually did. Ann took me outside to eat something, and I needed that break, because sitting and watching death, and the death of Mattie almost takes your breath away.
Peter and I spent a great deal of time today monitoring Mattie and also talking with him. In fact, when everyone was visiting, we had solemn moments, but also moments of laughter. Laughter because Mattie was a very humorous fellow! Kathleen told me that the nurses love Mattie, but they also love us. That Mattie has left a legacy, and his love will always live on within us. Mattie did not go to school this past year, but in a way he went through the hardest school of all. The school of cancer, which shows you the most vulnerable and raw sides of life. In fact, it has left me so raw, that I emotionally am not the same person anymore.
Mattie's nurses all came in tonight at their shift change to kiss and say good-bye to Mattie! It was very touching. Kathleen told me that even though Mattie isn't awake, he can hear us, and that he worries about us and is holding on because he knows we do not know how to say good-bye to him. So tonight, Peter and I mustered the energy to talk with Mattie together. We told him we loved him, were proud of him, that he did a great job fighting the cancer, but now he is in control and can decide when he has had enough and wants to rest. That we will be okay, and that we will always, always love him. We told him that we couldn't have asked for a better son, and that he was going to a place where he would be at peace, able to run and play, and meet up with family members and friends who love him but whom he has never met. My sign off tonight, as it always is to Mattie was, "Una Moon loves Mooshi Moo." Mattie coined the nickname, Una Moon for me, and he is my Mooshi Moo.
It is hard to say how long Mattie will be with us. It could be hours or days. But it is no longer weeks! His whole disease has been one crisis after another. His cancer required three major surgeries, 11 months of chemotherapy, and intensive physical therapy. However, there was NO break between treatment and recurrence. In addition, even death is not an easy process for Mattie. It has hit him hard and hasn't given us the chance to talk as a family. This year has left me shell shocked, questioning everything about life and the future, and the true purpose for our lives. Mattie is being kept comfortable, which is a blessing, because the sounds coming out of his body and lungs are frightening. I doubt we will sleep at all tonight! I am saddened that Mattie will be unable to go on a planned beach trip that the Lombardi Clinic arranged for us on September 13 through the Foundation, Believe in Tomorrow. It wasn't meant to be clearly. One thing I do know is I hate Osteosarcoma with every fiber of my being. I have seen Mattie suffer way too much this year, and this suffering will always remain a part of us.
My head is pounding tonight, my heart is heavy, and I am truly and deeply saddened over the pending loss of Mattie. Ann, is headed back to spend time with us at the hospital this evening, and despite losing her brother to cancer almost two years ago, I appreciate and value her commitment, support, and love she has for us in order to be able to walk through this with us now.
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