Saturday, November 19, 2022

Saturday, November 19, 2022

Tonight's picture was taken in November of 2005. Mattie was three and a half years old and that weekend my lifetime friend, Karen, was visiting from NYC. As you can see, Mattie was keeping Karen busy and they were building a big blocked structure on our dining room table. Mattie wanted to show us that he was taller than what he built, so naturally he got right up on the dining room table to prove his point.  I am so glad that Karen got to meet Mattie when he was well, because it is hard to describe the essence of Mattie! Or let's put it this way, I can try to describe it but even my words do not do him justice.  

Quote of the day: You believe you could not live with the pain. Such pain is not lived with. It is only endured. I am sorry. ~ Erin Morgenstern

Today I felt like I was on a treadmill. I was on the go from the moment I woke up. I have prepped my parents for two days now, that Peter and I would be going out to dinner tonight with friends..... as they wanted to celebrate Peter's birthday. No matter how much I prepared my parents, neither one truly acknowledged these dinner plans. As I brought it up over breakfast that I would be going out to dinner without them, my mom had a fit. Because they like getting out of the house daily, I planned to take them out for lunch, so they could eat a heavy lunch and therefore not need dinner. When my mom heard I was going to take them out at 1:30pm today, she was less then pleased. She said it was too early and would not feel like eating at that hour. Honestly at times there is no reasoning with her. Mattie, who was 6, was far more compliant. 

All I know is there is no way I can go out without making sure their needs are met. Mainly because my mom can't function, cook, and serve food. So in reality, going out with friends is more problematic for me than staying home and sticking to the routine. Naturally one may say.... why not order food in? That would be an excellent thing to do, but again there are times rationalizing with my mom is just not worth it. I pick my battles. So instead I took them out at 3pm today, and of course I felt pressure to manage their schedule and my own. 

In the midst of all of this, I met with my neighbor today. They are going out of town for Thanksgiving and they want me to take care of their home. So I went in to see what they specifically wanted done. I haven't lived here long, but these neighbors really trust and like us. Which is an honor. 

I am signing off for tonight and hope going out does something for my mood! 

Friday, November 18, 2022

Friday, November 18, 2022

Tonight's picture was taken in November of 2005. Mattie was three and half years old and doing one of his favorite things.... painting with his feet. I have to admit this wasn't one of my favorite activities of Mattie's, as I did not like the mess and the clean up. But he enjoyed it and loved to create. If you notice, there was red tape of the floor. This helped Mattie understand the perimeters he could work in, as I did not want paint on the rugs and furniture. Mattie understood this and for the most part wanted things around him clean and organized. The apple did not fall far from the tree there! 

Quote of the day: It’s so much darker when a light goes out than it would have been if it had never shone. — John Steinbeck

It was a very busy day today, which involved a lot of driving. After I got my dad ready to go to the memory care center, I took my mom into Georgetown to get her hair and nails done. It was a cold and windy day and parking in the city was impossible. So I dropped my mom off, and spent about 15 minutes looking for parking. While she was getting her hair done, I got my nails done. I have known my manicurist since 2009. I met her right after Mattie died and we can spend hours chatting. Needless to say, 13 years later we have gotten to know each other well. She is a mom of two boys and one of her children has a mental health problem. Despite the progress our society has made with mental health, there is still a stigma and therefore the conversations she has with me do not translate down to her other clients. 

As she was talking today, and I got an update on her life and family situation, I couldn't help but feel like we shared similarities. We are both caregivers and though we face different challenges, the emotional and physical toll are quite similar. No matter how much you love the person you care for, there will always be conflicts between family members, disagreements on how the caregiving is done, and the number one problem is no time for one's self or one's needs. It is a constant state of giving, providing care, and trying to keep a stable and peaceful environment. All I know is, it does come at a price. 

After the salon, I drove my VERY full car to Georgetown University Hospital. The salon is about ten minutes away, which made it very convenient for me today. Naturally I have an emotional connection to this hospital, as this was where Mattie was treated. I had the opportunity to meet with child life today and they said they miss seeing me, because pre-COVID, I pushed our Snack and Item Cart around the pediatric hallways on a monthly basis. Child life is working on getting me signed up as an official hospital volunteer, which would enable me back into the units. 

The outpatient clinic at the hospital sent me this photo today. In addition to our Cart, they set up a coffee station, as we donate countless Keurig pods a year. So now Mattie Miracle services both in-patient and out-patient pediatric families at Georgetown. 

This was today's donation! It is an impressive amount and frankly the fact that all of these items are donated to us, produces an indescribable feeling. We have the best supporters. The items you see here were just for Georgetown, but we donated a similar quantity of items to Children's Hospital at Sinai (Baltimore, MD) and NIH's Clinical Center (Bethesda, MD). 

Thursday, November 17, 2022

Thursday, November 17, 2022

Tonight's picture was taken in November of 2005. Mattie was three and half years old. Mattie loved his pajamas and he especially loved climbing and jumping on our bed. In fact, on the weekends, if I did not get up early enough, I would hear Mattie running down the hallway from his bedroom, into ours. He would then come over to my nightstand and literally stare at me. As if he could wish me to wake up! Some times I would indeed wake up but other times he resorted to climbing into bed next to me to make sure I was awake. Like Peter, Mattie loved the morning hours. 

Quote of the day: In days that follow, I discover that anger is easier to handle than grief. ~ Emily Giffin

My dad had his second to last physical therapy session today. Literally he has been doing therapy at the hospital since July 7th. Four months later, we have done speech, occupational, and now physical therapy. On December 1, it will be my dad's last session. Mainly because he has plateaued and there really isn't more the therapists can do with him. So now the trick is how to maintain what he learned. The weight falls on me, since my dad has NO memory of anything he has done with his therapists. Literally you can ask him five minutes after a therapy session is over what he did, and he truly can't tell you. 

The therapist and I have discussed getting him a personal trainer, skilled at working with people who have dementia to come to the home. I even found such a company, with licensed professionals. Of course the catch is health insurance will not cover it, it is an out of pocket service. I am discussing this with my parents and neither one of them seem open to this concept. But it would help me, and remove me from having to be my dad's therapist too. I find that he performs much better and works harder for a stranger than he will for me. So in this case, a personal trainer is a good option for him. 

Changing the subject, later today, I received an email from a parent of a child with cancer. The email said:

I wanted to reach out because I learned about the Standards of Care you guys worked on and I just wanted to say thank you, it was exactly the things I’ve felt like we needed support with all along but haven’t gotten. I’ve kind of felt crazy all along for wanting these kinds of support. I thought for a while maybe I was the only one struggling so much and that’s why none of these supports are in place as a Standard. As time has gone on I've realized I’m not alone and so many other families are struggling too, so again thank you for working to make sure those supports are put in place I think it’s so needed and so important. I also just wanted to say that if there’s anything I can do to help or share our story and how needed these things are I would love to help. I have the link for your Standards brochure and will share it with our hospital and I hope that’s a step in the right direction.

This message says it all! So many healthcare settings forget that childhood cancer is NOT just about the medicine. Which is why we started beating this drum in 2012, and haven't stopped yet. Ironically we have been making progress, but changing the healthcare system is a slow and complicated endeavor. However, we believe that now that the evidence based Standards exist, we need the help of families to demand this care from their institutions. Which is why in the next phase of the Standards research (which we received funding for), we will be capturing the voice, reflections, and insights of families who have a child with cancer. 

Wednesday, November 16, 2022

Wednesday, November 16, 2022

Tonight's picture was taken in November of 2007. We went to Boston for the Thanksgiving day holiday that year to visit with Peter's parents. No matter the weather, Mattie always needed to move around and have outdoor time. So we took him to a local pond and nature trail. Mattie loved the openness, the peace and quiet, and seeing all the birds. 

Quote of the day: My mom has experienced a lot of loss in her life and she told me at one point, there is an empowerment that comes with grief—at some point you find it. It’s very hard but you will find it, and I think at a certain point you can choose to sort of fall from this or you can choose to rise. ~ Lea Michele

After my dad was dropped off at the memory care center, Peter, me and my mom got on the road. We were headed to Children's Hospital at Sinai in Baltimore, MD. It was a 90 minute drive each way, so it was a long day in the car. Thankfully Peter was able to get every item we were donating to the hospital in the car. 

Get a feeling for how stuffed the car was?

This was my seat!

While Peter was driving, I snapped a photo of my view. Peter suggested I take Dramamine before this trip, and it was a great idea. Since I easily get motion sickness in confined spaces, where I can't see out, it could have been a bad trip for me without the med. 

This is a photo of our Cart at the hospital. This Cart makes its way from the outpatient unit to the inpatient unit at the hospital, and supports families caring for children with cancer. We were told that the Cart is so popular that other departments within the hospital want to know how they can get their own Mattie Miracle cart. Great to hear!

We met up with Geannie, who snapped the photo for us. Geannie is our philanthropy contact at the hospital and is very professional to work with! We also got to meet Laura (who heads up the child life program) and Lily (the new Mattie Miracle child life specialist). Both women were appreciative of our work, dedicated to meeting the needs of children and their families, and very easy to chat with. In fact, Laura previously worked at Nemours Children's Hospital in Delaware. It turns out that she is very familiar with our Psychosocial Standards of Care. As she was working on implementing them at her hospital in Delaware. So when she got to meet us, she was excited to meet the parents behind these evidence Standards of Care. 

Tuesday, November 15, 2022

Tuesday, November 15, 2022 -- Mattie died 685 weeks ago today. 

Tonight's picture was taken on November 12, 2008, the day before Peter's birthday. We were with Mattie in the pre-op area, as he was headed into a 14 hour long limb salvaging surgery. A surgery that would remove bones in his right leg, left arm and left wrist. It was a ridiculous hour of the morning, but fortunately we advocated for Mattie to be admitted to the hospital the day before. Otherwise, trying to get into the hospital at that hour would be stress beyond belief. Because every admission required new paperwork. Regardless of the fact that we were frequent flyers, coming in and out, for months by that point in time. I remember how stressed out we were that day and the fact that Mattie could smile was truly heroic. 

Quote of the day: Life seems sometimes like nothing more than a series of losses, from beginning to end. That's the given. How you respond to those losses, what you make of what's left, that's the part you have to make up as you go. ~ Katharine Weber

It was a day when my dad had nothing scheduled, no memory care program and no physical therapy. These days are rare. Therefore, I thought I would have some time to work on Foundation tasks. Forget it. I got derailed on scheduling my mom's physical therapy appointments for January, working with her doctor on getting a script for blood work and the list went on. Honestly it is very frustrating. When I finally found a rhyme of getting some work done, I had to stop because my mom wanted to go out for tea and a snack and she wanted me to take my dad along. Traveling anywhere with my dad is a show. It requires a tote bag filled with items to change him and his chair pad. Certainly I would not mind schlepping all of this stuff if I got the feeling this was good stimulation for him and he was enjoying what we are doing. He says his favorite thing is "being together." But wherever I take him, his head is usually down, eyes closed, and he is disengaged from the moment and conversation. This is actually very depressing day in and out. 

This afternoon, Peter mentioned Mattie's model magic birthday cake to me. Peter wanted to know where it was! I literally stopped in my tracks? WHAT DO YOU MEAN WHERE IS IT? In my mind, it has been in Peter's office all this time. I know I saw it in there at some point. Make a long story short, I went room to room in the house and I CAN'T find Mattie's cake. That may not sound like a big deal, but to me it is like having an emotional crisis. I wanted to literally start screaming. But who is going to listen to me?! My parents were waiting to go out, so I had to put my internal meltdown somewhere to address their needs. I have no clue as to where Mattie's cake is! This cake was moved to this house from Washington, DC and it was on display for months. Who would take the cake? It has NO monetary value, only sentimental. I am  hoping the cake fairy visits us to help us get this special memento back or at least reveal where it maybe hiding. 

Monday, November 14, 2022

Monday, November 14, 2022

Tonight's picture was taken in November of 2008, around the time of Peter's birthday. Mattie worked on creating a cake out of model magic and colored it in a fun way. To this day, we still have this cake on display. I am sure Mattie's art therapists at the time did not realize they were helping Mattie and us create legacy items, but in essence this is what every art creation of Mattie's has become. We are thankful to have each and every one of these items in our possession. 

Quote of the day: Death is a challenge. It tells us not to waste time. It tell us to tell each other right now that we love each other. ~ Leo Buscaglia

I have no idea how, in the midst of all that I have been dealing with, I was able to write a November newsletter for the Foundation and push it out today to all of our supporters and on social media. I have held off sharing the news on the blog, because I wanted it captured officially first. But I am proud to say that Mattie Miracle is partnering with the B+ Foundation, who has generously donated $115k to support implementation research with the Psychosocial Standards of Care. We have a long standing connection with this special non-profit, and it makes perfect sense to form a partnership on the next phase of Standards research. This research is vital to our mission, because Mattie Miracle is committed to seeing these Standards applied at all treatment centers in the country, thereby making sure that children with cancer and their families have access to evidence-based psychosocial care. 

To read the specifics, here is the article from our November Newsletter:

Mattie Miracle met Joe McDonough, the Founder of The Andrew McDonough B+ Foundation in March of 2012, when he and his daughter, Ali, attended Mattie Miracle’s Psychosocial Symposium for Childhood Cancer on Capitol Hill. The Symposium launched a three year long international research project to develop the first Psychosocial Standards of Care. The Standards were published in a special supplement of Pediatric Blood & Cancer in 2015. These historic evidence-based Standards define what children with cancer and their families must receive to effectively support their psychosocial needs from the time of diagnosis, through survivorship, or end of life and bereavement care. Soon after the Standards were published, The B+ Foundation became one of the first professional endorsers of the Standards, signaling their commitment to evidence based psychosocial care. 

The Andrew McDonough B+ Foundation is named in memory of Andrew McDonough. Andrew battled leukemia, septic shock, and complications of childhood cancer for 167 days before passing away on July 14, 2007, at the age of 14. Andrew’s B+ blood type became his family’s and friends’ motto throughout his fight against childhood cancer – to “Be Positive.” The B+ Foundation is the largest provider of financial assistance to families of kids with cancer in the US, helping over 4,000 families this year and have proudly provided funding to over 150 critical, cutting-edge childhood cancer research projects at top institutions globally.

Mattie Miracle is committed to seeing the Psychosocial Standards of Care operationalized at every cancer center in the Country. However, to achieve this goal, implementation research must be conducted to 1) assess the extent childhood cancer programs in the United States are delivering care consistent with the Standards, 2) capture the voice of family caregivers to determine which Standards of Care should be prioritized for implementation, and 3) identify barriers and facilitators of implementing the prioritized Standards. 

To conduct a large-scale implementation study of this kind, requires significant funding. Mattie Miracle is thrilled to announce that The B+ Foundation has generously awarded the Standards Research Team a $115,000 grant to pursue this cutting-edge research. The team conducting this study represents a strong partnership between family advocacy groups (Mattie Miracle Cancer Foundation, Momcology) and researchers (Dr. Anne Kazak, Dr. Kimberly Canter, Michele Scialla, Dr. Emily Pariseau, Dr. Kamyar Arasteh, Dr. Lori Wiener) who are leaders in the development, testing and implementation of psychosocial care in pediatrics.

Victoria Sardi-Brown (Mattie Miracle Co-Founder and President) stated, “We are grateful to Joe McDonough and The B+ Foundation for their long-standing commitment to The Psychosocial Standards of Care. When it came time to seek funding for this groundbreaking implementation research study, Mattie Miracle chose to partner with The B+ Foundation. The B+ Foundation is a leader in the childhood cancer advocacy community, they generously support cutting edge research, and they have been an integral part of the Standards of Care development journey since 2012. I am confident with B+ Foundation’s financial support that the Standards will continue to guide and to support the psychosocial care of children with cancer and their families.” 

Joe McDonough (The Andrew McDonough B+ Foundation Founder) stated, “There is no disputing the significant physical challenges that a child with cancer faces, but far too many people don’t realize the profound emotional challenges that the children – and their families – face. We have tremendous admiration for Mattie Miracle for advancing the need for and then creation and implementation of the Psychosocial Standards of Care. While there have been many people involved in the Standards, I will always thank Vicki and Peter Brown for being the catalysts. The Andrew McDonough B+ Foundation is proud to be a partner in their efforts.”

Sunday, November 13, 2022

Sunday, November 13, 2022

Tonight's picture was taken in November of 2007. It was Peter's birthday and as always Mattie wanted to do something for his dad. So together Mattie and I baked a cake.... Peter's favorite, a lemon cake with vanilla frosting. Basically Mattie and Peter were alike on this front..... they were opposed to chocolate. I am so happy we celebrated these moments and I captured them on camera. 

Quote of the day: Death ends a life, not a relationship.  All the love you created is still there. All the memories are still there. You live on- in the hearts of everyone you have touched and nurtured while you were here. ~ Mitch Albom

Today is Peter's birthday. I would like to say I helped him have a relaxing and memorable birthday. But it wasn't even close. From an outsider's lens, you may say it was actually a disaster. I think when exhausted and living with chronic stress, things can be misperceived, or tempers can flair. Though I think I am doing as best as I can with my parents, in the process, I have made no room for anything else. It was clear to me today that at times Peter is talking to me, but I am not listening. Or I am listening but not acknowledging what he is truly saying. It is a hard reality for me to face, because no one likes to know that one's actions are hurting someone they love. 

Needless to say I was filled with all sorts of emotions today. Everything from anger, sadness, and true helplessness. As I can't see a clear path forward to resolving my situation and in the process I am clearly making no one happy. I can have rational epiphanies and I can also feel angry, because I am changing my entire life around to meet people's needs once again. I don't need an "at a girl," but I am quite sure the average person would have trouble juggling what I do. 

Despite my daily routine, I found a way to get Peter a few gifts. I can absolutely appreciate why he did not want to open them and taking a step back I understand the stresses he is living with.... full time caregiving, lack of freedom and control, and of course the one that isn't always discussed.... Mattie's death. Mattie's death is part of our daily lives, but on holidays and birthdays, his death hits us even harder. It forces us to see that another year has gone by, we are aging, and we do not have Mattie in our lives to brighten our future. As a future without your child is a bitter pill to swallow, not just on the day he died, but forever. 

Ironically to add humor to my day, my dad thinks Peter and I are in our 60s! He wanted to wish Peter a happy 62nd birthday! HONESTLY!!!! My dad has aged us dramatically and I corrected him. Though in his mind I guess 60 is very young!

We went out for an early dinner because we know by 5pm, my dad is wiped out and can hardly hold his head up. At the restaurant, Cheryl (one of our favorite servers), gave Peter a birthday card. The front of it says.... young man Peter and the sentiments inside were beautiful. 

Cheryl only knows a part of Peter and yet the part she sees is a good representation of him. I think Peter had to read these words and see what a difference he makes in the lives of others. To me these words make a very beautiful and meaningful gift. A gift that in essence helped to change the tone of our day.