Thursday, February 14, 2013

Thursday, February 14, 2013

Tonight's picture was taken on February 14 of 2009. This was my last Valentine's Day with Mattie. That day Mattie's art therapists (Jenny and Jessie) worked with Mattie to create a host of surprises for me. The first one you can see around my head. The second was a box filled with Valentine's Day cards. All cards Mattie hand created for me. The final gift was a beautiful red pottery vase (which Mattie worked on for a while in clinic -- he used a potter's wheel and glazed it red) filled with tissue paper roses. Needless to say I kept all three items! As Mattie was sharing these items with me, Jenny captured this beautiful photo. It is by far one of my favorite photos of us in the hospital. Why I love it so much is because it captures our special look. Mattie and I would frequently touch noses and stare at each other in the eyes. When I think of Valentine's Day now, my mind immediately flashes to this photo!


Quote of the day: What is uttered from the heart alone, will win the hearts of others to your own. ~ Johann Wolfgang von Goethe

Our five hour psychosocial childhood cancer think tank was very successful today. We had a room full of 25 professionals representing the fields of psychiatry, psychology, social work, nursing, and mental health counseling. In addition to Peter and I, there was another professional present who is also a parent advocate. I appreciated her comments VERY much. This was an international group with a leading clinician from Holland and another from Canada, not to mention others from all regions of the United States. Each participant not only represented a major cancer institution but they are also connected to a cancer organization. Organizations which would be key in the acceptance and endorsement of a pediatric psychosocial standard of care. Our five hour agenda looked like this...............................................

 

9:00     Welcome

Vicki and Peter Brown and Jimmie Holland ("Mother of Psycho-Oncology, Memorial Sloan-Kettering, NY)

9:10     Introductions

9:30     Lessons from the adult psychosocial oncology community - Paul Jacobsen (Moffitt Cancer Center, FL)

10:00   Principles and considerations for the development of standards - Andrea Patenaude (Dana-Farber Cancer Center, MA)

10:15   Review of existing standards (NCCN, CAPO) and existing guidelines - Andrea Patenaude, Lori Wiener (National Cancer Institute, Bethesda, MD), Wendy Pelletier (Alberta Children's Hospital, Canada), Martha Grootenhuis (Emma Children's Hospital, Amsterdam)

10:45   Break into Groups. Main Overarching Question: What is truly “essential”

12:00   Break

12:15   Working Lunch. Groups present (Consensus Based Approach)  - Paul Jacobsen, Anne Kazak (Nemours Children's Health System, DE)

1:15     Next Steps  - Bob Noll (Children's Oncology Group)

1:45     Closing Comments - Vicki and Peter Brown

2:00     Adjourn

 

 

This photo was taken later in the day after our small group working session. I was fortunate to have my friend and colleague Denise with me. Denise and I were in the same working group and I appreciated her insights and observations on the day. Denise is also a supporter of ours and I am so glad she wanted to attend with us because I really value our supporters. So much so, that at the end of the event, I reminded participants where the money came from to host this event. I told them that I am a mental health counselor by training, NOT a fundraiser. But that I am learning quickly!!! All the funds generated for this event came from hundreds of people within our Mattie community who support us, our mission, and who have confidence and faith in what we are trying to achieve. Though all our supporters weren't in the room with us today, they were with us in spirit. I am always humbled because without our community funds, we couldn't accomplish MUCH!

 

Peter and I received excellent feedback today. One of the psycho-oncologists acknowledged Mattie Miracle in her PowerPoint slide as the impetus for the notion of establishing a Standard of Care. Our March 2012 Symposium, caused a chain reaction. Now other cancer groups are talking about the importance of establishing a Standard of Care. Naturally since this is our baby, I could take offense over the fact that others want to claim this now, but I really do not. Our goal is to get this Standard established and as long as we are sitting at the table helping this goal come to fruition, I am happy and willing to work with all interested parties. Several people came up to me today to let me know how impressed they were that we were able to convene all these minds together in one room, and not only were they all together, but they really worked and were motivated to accomplish something today. In addition to that achievement, many of these professionals have signed on to remain working on the project with the goal of convening at another meeting in a year. A meeting which we will consider funding and hopefully will have some sort of written product as a result.

 

Another insight I had was that parent participation is crucial in this process. Though these individuals are very skilled and work in this arena, they haven't LIVED our experience. Peter and I honestly have a lot to contribute to the discussions and as I always say, Mattie was my BEST TEACHER. Within the think tank, I also planned a beautiful luncheon buffet. I drove the hotel crazy with this buffet, because their pairing of foods made no sense to me. So basically they worked with me to design a buffet I would be happy with, and they succeeded. Got lots of food compliments today!

 

 

After the think tank was over, we met up with our friend Dave and we carted over all our items to the exhibit hall to set up our Mattie Miracle booth. Dave will be manning our booth for most of the conference, so it was important he understood our vision for the area. Peter snapped this photo of the listing of some of the exhibitors.

While we were setting up our booth, we met Michelle. Michelle sits in the booth adjacent to us. She came over because she admired our booth and wanted to learn more about us. She too is a cancer survivor, and when I told her about Mattie, she was captivated by our story. She read through our brochure, looked at our pictures, and wanted to hear more about us. In addition, she wanted information on how to make a donation to the Foundation. I told her she made my day, since in all reality we NEVER did a conference exhibit booth before. Goodness knows I attended enough conferences in my lifetime, but schlepping the materials and setting one up is another story. You can see the retractable banner behind us and our new tablecloth which we purchased for the Foundation!

Our booth features t-shirts, drawstring bags, pens, brochures, informational placards, photos, a sign up sheet for our e-newsletter, business cards, and of course CHOCOLATE!!!


We are hosting a dinner tonight with our key psycho-oncology players, so I am signing off. I am exhausted since neither one of us slept well last night. However, before I sign off, I want to wish all our readers a Happy Valentine's Day. You have to know I love all of you for your support, for reading my thoughts and feelings each day, and for all your lovely feedback. It is through your reading of the blog that you help keep Mattie's memory alive, which means a great deal to me.

Wednesday, February 13, 2013

Wednesday, February 13, 2013

Tonight's picture was taken in February of 2009. Mattie was home between hospital treatments and his good friend gave him this incredible Lego set. Mattie worked with Peter solidly for a day to create this Victorian village. This village sits in our living room even today! At one time our whole home used to be filled with Lego bricks and structures. Now only several of Mattie's key pieces are still with us on display. The thousands of other Lego bricks we had were donated to others who could use them!



Quote of the day: Be who you are and say what you feel because those who mind don’t matter and those who matter don’t mind. ~ Dr. Seuss



I got up this morning at 5:30am. NOT my time at all. Unlike Peter, I am NOT a morning person. We have flown to Los Angeles MANY times before, but never from National airport, which is much closer to where we live in DC, than Dulles Airport. This alone made the day go more smoothly because we did not have to allot over an hour of commuting time to the airport. Today's flight was like glass, VERY smooth. Almost makes you appreciate flying, which coming from me is a remarkable statement. Peter snapped some pictures while we were in the air. This is a photo of the Rockies in Colorado.

 

 

This is a picture of Monumental Valley in Arizona from the air. It was crystal clear today once we got out of DC, which made it a wonderful experience to look out the plane's window and see our Country's terrain.

 

An aerial photo of Lake Powell! Our friends Denise and Dave are traveling with us. They are here to help us at the Think Tank and exhibit hall table. When we landed in LA, we all journeyed together to the rental car agency and then drove about 40 minutes to Huntington Beach. The freeways were open and moving smoothly.... another unheard event!!! 

 

When we arrived at the Hyatt Regency, we quickly discovered how lovely and friendly everyone at this resort and spa are and what a wonderful setting this is for a conference. The front desk upgraded our room and as you can see we have a lovely view of the pool and the Pacific Ocean. It is totally hard to believe that on one coast it can be grey, depressing, and freezing, while on the other coast it is sunny and green!

 

Though we are a bit out of it, we did take a walk to the beach. The hotel has a bridge that crosses over the Pacific Coast Highway and brings you directly to the water. VERY few people were by the beach today, which made the experience very special and peaceful. It was us, a few people, and the sea birds!

 

The Hotel is very well laid out and is filled with amazing garden spaces, fountains, cozy nooks with fireplaces and couches, and basically it leaves you wanting to just unwind rather than ramp up for a conference.

 

The hotel staff can't do enough to accommodate you. I haven't experienced such service in years, which is why I am taking notice. The Hotel sits on 29 acres and literally while I was trying to figure out which direction to go to get to a restaurant, I had a hotel staff member come up to me to offer assistance. He literally escorted me to where I wanted to go. If the staff keeps this up and I may never come home!!! As my readers know, I mailed a huge box filled with Mattie Miracle items to the Hotel last week. Today the Hotel delivered the box to me so that I could re-assembled all my items in our room and will transport the assembled materials to the Exhibit Hall tomorrow. As you can see, I brought t-shirts, drawstring bags, and pens. The items you can't see are Foundation brochures, business cards, placards, chocolate, a Mattie Miracle table cover, and our retractable banner. We should be all set and I will post a picture of the table's set up tomorrow.

Our five hour think tank starts tomorrow morning at 9am. Wish us luck. It is an historic occasion, which I hope will energize the participants to invest in the long term goal of creating a psychosocial standard of care for childhood cancer patients and their families.

Tuesday, February 12, 2013

Tuesday, February 12, 2013 -- Mattie died 179 weeks ago today.

Tonight's picture was taken in February of 2009. If I had to give a title to this photo, it would be called "Friends!" On this particular occasion Mattie was stuck in his room on contact isolation. Several times Mattie's blood work revealed an infection which was deemed contagious. When this would happen, Mattie was basically isolated to his room to protect others from catching this infection. But being isolated 24 hours a day was torture beyond belief. That meant in a room the size of a large closet, Mattie had to play and live his existence. On almost every occasion, after a lot of screaming on my part and getting to know the infectious disease department, Mattie's cultures were usually found to be false positives. Meaning that he did not have an actual infection, and yet until they figured this out, Mattie was isolated for 48 hours. That may not seem like such a problem but we lived with so much stress already that isolation just magnified issues by 10! As you can see here, Linda (Mattie's Childlife Specialist) and Anna (Mattie's physical therapist) brought activities into Mattie's room to keep him moving and stimulated. Which also gave me a break, since besides mom and advocate, I was also full time playmate. You can also see Mattie's big buddy, Brandon, in the doorway. Brandon was recovering from an emergency appendectomy and though he couldn't come in the room, he was right there as usual supporting Mattie and trying to provide company! As Valentine's Day is quickly approaching, it seems very fitting to highlight the beauty of Mattie's friends!



Quote of the day: Children have neither past nor future; they enjoy the present, which very few of us do. ~ Jean de la Bruyere


Tonight's quote is quite true. Children have the beauty of living in the present time and enjoying it. Every moment seems magical and to last forever. I have to say that one doesn't need to be a child to live life in this manner. When Mattie got diagnosed with cancer, I lost the art of living for the future. I couldn't look ahead, because each day was so demanding, stressful, and required every ounce of energy to keep it together to do the right thing for Mattie. In addition, Mattie's prognosis was so uncertain, therefore looking ahead was rather grim. Therefore, like so many others who live with a trauma in their lives, one's perspective becomes very present oriented, following the one day at a time philosophy. I remember when Mattie was in treatment for cancer, every thing else fell by the wayside. Our sole focus was spending time with other and getting him better. In many ways, this was very freeing from the daily and ludicrous expectations of life. I certainly could have done without Mattie getting cancer and dying, because I saw how his battle began to transform me, and to some extent this transformation is still occurring. The Vicki some may have known no longer exists. She too died on September 8, 2009. Mattie's cancer lives on inside of me, and though you may not see the scars, they exist and on certain occasions given the conversation, the situation, or circumstances, you will hear the scars come out loud and clear. The scars are visible in my perspective, thoughts, and feelings. 

This afternoon, both Peter and I took Patches to the vet. Patches never knew what hit her. Typically getting her into her cat box is virtually impossible. However, now that she can't hear, she wasn't aware of a thing I was doing. The poor thing was resting comfortably on Mattie's bed when I scooped her up and put her in her cat box. I brought a fuzzy blanket for her, typically the vet doesn't allow linens from home in the boarding area. But Patches needs this extra level of comfort. I am glad they did not fight us on this. May our Nurse Patches remain strong this week and hang on until Peter's return on Sunday.

We are all packed and ready for our trip to California. I have had a hard day filled with all sorts of nerve pain. At times I try to use distraction not to concentrate on the pain, but by 5pm today, I was NOT in good shape. I am desperately hoping that some time away from my computer will help my recovery. Goodnight from DC, tomorrow's posting will be written to you from Los Angeles.
 

Monday, February 11, 2013

Monday, February 11, 2013

Tonight's picture was taken in February of 2009. Jenny (Mattie's art therapist) and I were taking Mattie to the clinic. What you may not be able to see was that Jenny and I were running alongside the wheelchair. Mattie wanted to go down the ramp between the main building and the clinic but he literally wanted me to let go of the chair so he could feel the rush of flying, like on a roller coaster. Something we did not share in common! Naturally I couldn't let go of the wheelchair for various safety reasons, but Jenny and I decided to gently hold the chair and run down the ramp with Mattie so he could experience the fun. Mattie loved it and you can see a hospital employee in the background watching our antics! With Mattie, regardless of the context, there were always antics.  


Quote of the day: Animals are such agreeable friends – they ask no questions, they pass no criticisms. ~ George Eliot


Though we did a big push this weekend for this week's events, there was still more last minute things to do today. Naturally with the think tank comes a luncheon that needs to be planned as well as a dinner with our key psycho-oncologists. Working with hotel staff who are on a three hour time difference from me is tricky, which is funny because I would have thought how significant could three hours be?! Well it is somehow, yet by the end of today, everything was settled.

Tomorrow is our last full day with Patches before she gets boarded at the vet. Peter comes back from Los Angeles on Sunday, so I am hoping that in less than a week away from us she will be okay. She is sticking close to us now and I know our presence provides her comfort. But I know I can't take her to LA and I also know that her vet understands her. Just a quandary.

I want our readers to officially know that at the national conference we are attending this week that Mattie Miracle was nominated for an award and will be the proud recipient of a Distinguished Public Service Award. This award acknowledges our work on the national level. Below I have included the award criteria and then a link to the award announcement.

Distinguished Public Service Award

Purpose: The Distinguished Public Service Award is presented to a leader in recognition of outstanding contributions to the field of psychosocial oncology.

Eligibility: Nominees must demonstrate outstanding contributions to the field of Psychosocial Oncology at the national level. Additionally, the APOS Board of Directors shall consider to what degree the nominee assists APOS in fulfilling its aims to accomplish the following:

• Promote the highest professional standards of psychosocial oncology;
• Study, research, and exchange information, experiences, and ideas leading to improved psychosocial oncology;
• Encourage clinicians to specialize in the practice of psychosocial oncology;
• Foster the professional development of psychosocial clinicians, individually or collectively;
• Increase consumer awareness of the importance of psychosocial oncology.

To nominate an APOS or community member for this award, please submit a letter of nomination and the nominee’s curriculum vitae (or resume) to APOS Headquarters. The letter of nomination should specifically state why the nominee is deserving of the award by providing evidence of how the individual has contributed to providing outstanding service to the public related to the field of psychosocial oncology.

http://www.apos-society.org/about/awards/awards.aspx
 

Sunday, February 10, 2013

Sunday, February 10, 2013

Tonight's picture was taken in February of 2009. I kept a supply of cupcakes in a Tupperware in our room. I baked them at home between hospital stays and then packed them up to go to Mattie's PICU room. The reason why two dozen cupcakes were needed was I used them as incentives to get Mattie to do his physical therapy! In this particular picture you can see Mattie with Anna, his physical therapist. That day happened to be Anna's birthday and when Mattie found out, he wanted her to have one of his special cupcakes. So I snapped a picture of this dynamic duo together. Anna no longer lives in our geographical area, but she was one of Mattie's care team members would I absolutely loved. Not only was she extremely competent, but she was compassionate, could think outside the box, and was always honest with me. She deserved this cupcake and much more.


Quote of the day: The truth that many people never understand, until it is too late, is that the more you try to avoid suffering the more you suffer because smaller and more insignificant things begin to torture you in proportion to your fear of being hurt. ~ Thomas Merton

Though Patches was born in January of 1996, Peter and I consider today her official birthday. Because on this day she came into our lives. Patches is 17 years old today! HAPPY BIRTHDAY NURSE PATCHES. Patches was an abandoned cat on the streets of DC. We assume that someone did own her prior to us because at a young age she knew how to use a litter box and also LOVED the sound of a can opener. Patches managed her way into our commons area of our complex and was screaming her head off for two days outside. She was desperate for attention and a home! Apparently I was the only person on our floor bothered by her incessant meowing. So I put out a cardboard box outside for her to sleep in and some food. At that point I wasn't sure if she was someone's cat or abandoned. On February 10th she got more brazen and jumped on our kitchen windowsill. When I saw her that night staring me in the face while I was washing dinner dishes, she got to me. I had Peter go outside and offer her some steak. Patches was scared and ran away from Peter. So Peter decided to go downstairs to get our mail. When he came back up, Patches charged at Peter. He wasn't sure what she was going to do to him, but she charged at him in order to rub against him and get petted. The bond between Peter and Patches STARTED on February 10th and has grown ever since. That night, we brought Patches into our home but locked her in the bathroom. I wasn't sure if she had an illness or what, and I wanted her checked out by a vet. The next day we took her to the vet and who found a whole host of problems with her. Keep in mind Patches was walking around with a BB bullet in her left! The bullet remains in her leg even today, because it was deemed safer not to operate on her. Patches was a very sick girl who we had to nurse back to health at such a young age. Our complex at the time did not allow cats in the units. I tried to find someone to adopt Patches but it was impossible. So it came down to taking her in (mind you I am allergic to cats!) or most likely going to an animal shelter. There was no way I was letting that happen to such a sick cat, so despite our leasing agreement, we adopted Patches. Now of course most of our neighbors have cats! If you ask Peter when Patches became our cat, he would most likely say that she became our cat before February 10th, because as soon as I saw her walking around our commons area, I named her Patches. I named her for her colorful calico coat! Somehow she was destined to be with us.

We spent most of the day getting ready to depart for California on Wednesday. By mid-day Peter encouraged me to get washed and dressed. We went for a long walk and by the time we came home we were both frozen. Nonetheless, I went back outside to clean our deck. When I am inspired, I have to follow the energy. There were so many leaves and bird seed shells to contend with, and what I learned is our resident birds prefer coming to us when our deck is cleaned. As soon as I swept and rinsed off the deck, around 40 sparrows came for a visit. One of my favorite fellows came by.... one of my Red Headed Finches. I tried to capture him in motion on one of our feeders!