Saturday, February 16, 2019

Saturday, February 16, 2019

Tonight's picture was taken in March of 2009. You maybe asking what was going on here! Mattie was talking to his child life specialist, Linda. Mattie and Linda had a very close relationship. So much so that after Mattie died, we have been raising money for child life programs at different hospitals. We could never have managed the day to day turmoil without Linda. That day at the hospital, there was a special ribbon cutting ceremony to officially announce the launch of the child life playroom in the pediatric units. Believe it or not, when Mattie started treatment at Georgetown there was NO playroom. The addition of a playroom was a God sent. Linda understood that Mattie thrived on tasks and responsibilities. So she asked Mattie if he would like to cut the ribbon during the ceremony. Literally Mattie cut the ribbon with all the chief executives of the hospital standing behind him. Mattie loved it!


Quote of the day: To me a birthday means celebrating the presence of an individual in our lives. ~ Meena Bajaj 


In June of 2016, we became the God parents of baby Charlotte. Charlotte's parents worked with Peter. They are from Peru and their entire family lives there. So it was an honor to be asked to serve as her God parents. 

Today we hosted a birthday luncheon for Charlotte, who is turning three. Time has a way of flying by, as she seems like she was just a baby a minute ago. Naturally when we are around other children, we have the insight of what it takes to be parents. Despite the fact that Mattie is no longer with us, what we learned from Mattie follows us everywhere.

Charlotte did a great job at the table and actually tried all the food presented to her. She is very different from Mattie in this way and in some others. I don't think Peter and I ever had a peaceful meal with Mattie until perhaps he entered kindergarten. With Mattie there had to be challenges, games, and lots of stimulation at the table, otherwise, he would disengage and not eat. 

A beautiful face and I think Charlotte had a good time today. Which of course included gift opening!

Not only did Charlotte carefully open her gifts, but then she played with each one of them with me. It was fun to see how she interacted with the gifts I picked out for her. 

This is Daniel and Eric. They are friends of Charlotte's and came to the luncheon today with their parents. Sunny absolutely loved the attention!

Charlotte loved playing on the piano! I find it fascinating how kids gravitate to music. Mattie did too! Which is why our neighbor who moved out years ago, insisted on giving us her piano for FREE. She wanted Mattie to learn to play. So to me, this will always be Mattie's piano. 

I have to say this was the best chocolate cake I have ever made. It was absolutely delicious and moist. Not to mention easy to do! I added fresh mashed raspberries in between the cake layers and it was a wonderful addition. 

I love the look on Peter and Charlotte's faces! 

Peter snapped a photo of all of us together!

Friday, February 15, 2019

Friday, February 15, 2019

Tonight's picture was taken in February of 2009. I snapped this photo because I loved how Mattie devoured a homemade cupcake! He honestly lived on cupcakes for a period of time at the hospital. Cancer treatment wrecked havoc on Mattie's appetite. He went through a donut phase, a chicken tenders phase, an Utz (and ONLY Utz) potato chip phase, a vanilla shake phase, and  finally a cupcake phase. When ever we were home between hospital stays, I baked dozens of cupcakes, so I would have them available at the hospital!  




Quote of the day: Above all, be the heroine of your life, not the victim.
~ Nora Ephron


My morning started with a ct scan of my abdomen, with and without contrast. The last time I had such a test was back in 2012. Ordered by the same doctor, my urologist. However, in 2012, instead of finding an issue with my bladder, the radiologist found masses on my cervix and said it was indicative of an aggressive form of cancer. The pronouncement left me scared and shocked. But it also added a new doctor to my life, a gyn-oncologist. This doctor followed me with monthly scans for a year. Thankfully, that issue is benign. So needless to say, when my urologist asked me to repeat this scan today, I was less than eager. 

Every person I worked with today for the scan was delightful, starting with the lady who had to insert an IV in my arm for the contrast dye. But I made my wishes known early on in the process today. When Mattie was battling cancer, I learned from one of the hospital radiologists that patients have rights, and we have the right to ask to speak with a radiologist after completing a scan. Well since I learned that IMPORTANT piece of advice, I now always ask to speak to a radiologist so I know immediately what they are seeing on a scan. 

The tech also prepared me for the feeling of the contrast. When this contrast goes into your veins, it literally makes you feel like you are on fire from your head to your toes. Thankfully that feeling passed quickly and thankfully the radiologist saw no cancerous masses. My issues are kidney stones, yet again. Who knew one could be celebrating kidney stones. Considering the alternative, I will take the stones. Now of course, I need to figure out how to deal with them.

When I got home, I went upstairs to wash my hands in the bathroom. Look who followed me up and was eagerly awaiting his walk!

After Sunny's walk, I went grocery shopping, as we are hosting a birthday lunch for our God daughter, Charlotte tomorrow. Her family is coming over with some friends. 

I put a springy (I am hopeful!) table arrangement together.  

Tonight we set the table, so I don't have to worry about it tomorrow morning. In a way, we are cooking a special, almost Thanksgiving day, feast. Including a big turkey! 

PS..... do you see Sunny?? He's worn out, from watching me work all day!

This will be the first dinner we are serving on our new table. When our neighbors moved back to Ireland, they asked me if I wanted to purchase their table and chairs that they bought in Macy's. I am thrilled to have this new set up!

Thursday, February 14, 2019

Thursday, February 14, 2019

Tonight's picture was taken on Valentine's Day of 2009, our last Valentine's Day together. This photo was taken by one of Mattie's art therapists. This maybe one of my all time favorite photos, mainly because it captured the way Mattie always looked at me. He would touch my nose with his nose and stare into my eyes. He literally did this with me even when he was a toddler, before he could utter a word. Which is why I am so happy Jenny captured this Mattie tender moment. It was an unplanned moment, in which Mattie surprised me with a box full of Valentine's day creations. 

Quote of the day: Love cures people - both the ones who give it and the ones who receive it. ~ Dr. Karl Menninger 

As it relates to the photo above, It was a valentine to remember! Mattie worked for hours that day in the child life playroom with his art therapists. When I was invited back into the room, I was surprised with a crown of paper hearts and a box full of Mattie creations. Creations which I still have today. Because ten years have gone by, doesn't mean it gets any easier with time. In fact, I would say it gets more complicated and challenging. If your children are alive and healthy, then you have received the best Valentine's gift ever. It is that plain and simple.

I am not a big Valentine's day person. However, it seemed like everyone I saw today, wished me a happy Valentine's day. They of course were wearing pink or red! I was wearing neither. But it does lead me to question, what is the history behind this holiday? Well here are two historical accounts for the significance of the holiday and how it got its name........

FIRST:

The Catholic Church recognizes at least three different saints named Valentine or Valentinus, all of whom were martyred. One legend contends that Valentine was a priest who served during the third century in Rome. When Emperor Claudius II decided that single men made better soldiers than those with wives and families, he outlawed marriage for young men. Valentine, realizing the injustice of the decree, defied Claudius and continued to perform marriages for young lovers in secret. When Valentine’s actions were discovered, Claudius ordered that he be put to death.

SECOND:

Other stories suggest that Valentine may have been killed for attempting to help Christians escape harsh Roman prisons, where they were often beaten and tortured. According to one legend, an imprisoned Valentine actually sent the first “valentine” greeting himself after he fell in love with a young girl–possibly his jailer's daughter–who visited him during his confinement. Before his death, it is alleged that he wrote her a letter signed “From your Valentine,” an expression that is still in use today. Although the truth behind the Valentine legends is murky, the stories all emphasize his appeal as a sympathetic, heroic and–most importantly–romantic figure. By the Middle Ages, perhaps thanks to this reputation, Valentine would become one of the most popular saints in England and France.

My doggie valentine... Sunny got a grooming today! Not his favorite activity, but his groomer is in LOVE with him!

Wednesday, February 13, 2019

Wednesday, February 13, 2019

Tonight's picture was taken in February of 2009. Mattie was home in between hospital stays. Though it was painful for Mattie to walk, he did try taking some steps around our home with his walker. Mattie did not like a forward facing walker, somehow it made him feel like he was falling. But the reverse walker was a hit. Back then, our goal was to get Mattie walking again after treatment. Never realizing that this wasn't going to happen. 








Quote of the day: You can be a good neighbor only if you have good neighbors.  ~ Howard E. Koch


Yesterday Peter told me he saw staff from the DC medical examiner's office come into our building. They were taking photos and also had a body bag and gurney with them. Never what you want to see! Of course we did not know what had happened, but bad news has a way of traveling around quickly. Who died? The neighbor above me, who hated dogs. This woman and I had several major run ins with each other. In which she yelled at me and told me she was going to report me to management every time she saw me. She had an absolute fear for ALL kinds of dogs, even the little ones in our building. Imagine being scared of a docile chihuahua? 

Though this neighbor and I did not get along or even see eye to eye on pets, I certainly wouldn't wish her harm. Now that I know she died (and mind you she did not look physically ill) I actually feel badly that I couldn't find a way to get along with her. As Koch's quote points out, it is easy to be a good neighbor when you are surrounded by good neighbors. Unfortunately this woman did not bring about my best traits. Which illustrates who we surround ourselves with makes a big difference in our own attitude, opinions, mood, and behavior. 

The death of this neighbor truly bothers me. I am not sure it is because of our disagreement over Sunny, or because she died alone. So alone, that it wasn't until neighbors reported a bad smell coming from the apartment, that her body was found. Clearly she had no family around to check in with her. Which of course has me reflecting on my own life. My biggest fear is to land up like this lady, which could happen, since we too have no children. Caregiving responsibilities typically fall on one's children, but what happens if you lost your child to cancer? I am sure one figures out alternatives, but it isn't the same. As my neighbor's death poignantly reminds me. 

Tuesday, February 12, 2019

Tuesday, February 12, 2019 -- Mattie died 491 weeks ago today.

Tonight's picture was taken on Valentine's Day of 2009. I have been posting a series of photos taken from that moment in time. When Mattie surprised me with a crown of paper hearts and a box filled with Mattie creations and valentine's. Mattie was very proud of his accomplishments that day, and worked for hours on this surprise with his art therapists. When I was invited back into the child life playroom, Jenny (Mattie's art therapist) snapped a wonderful series of photos. Photos that I consider some of my favorites now. 




Quote of the day: Life is a question and how we live it is our answer. ~ Gary Keller



It was a very, very long day of traveling. I left by car for the airport at 9:30am, and now it is 11:15pm, and I am finally home and unpacked. The man who drove me to the airport was lovely. He basically told me his life story of immigrating to this Country from Armenia. I learned about his children, his wife, his philosophy on working hard, his religious beliefs, and his opinion about illegal immigration. He shared with me that many of his friends also lost their children to drug over dosages and how horrible he thinks legalizing any drug will be for our society. Needless to say it was a fascinating hour long drive, and I have to say I admire how this man came to this Country and made a life for himself and his children. I also admire how he has helped numerous people in his community turn their lives around. For example, he stopped three people from defacing property through graffiti. He literally jumped out of his car and stopped three men before they started spraying. He mentioned that his wife was frightened for his life while this was happening, but he gave the perpetrators a lecture about doing something more positive with their lives and that basically that after they made a mess, they wouldn't be feeling any better. 

Checking into the airport was also easy, which was a first for Los Angeles International Airport. Literally I had people coming up to me today to offer to help me with my luggage. I was stunned. It all worked out great, until the flight itself. 

It was 4.5 hours of turbulence. Not just any turbulence, but violent shaking. Needless to say, we did not have many opportunities to use the restroom, and even our descent was a pip. When we landed, we literally hit the runway with a bang! All I know is if I did not take Dramamine before boarding the plane, I would have definitely vomited all over the place. It was quite the welcome home. 

Monday, February 11, 2019

Monday, February 11, 2019

Tonight's picture was taken on Valentine's Day of 2009. Mattie surprised me with a crown of hearts and a box filled with Mattie creations. To this day, I still have this box and crown in our hallway closet. I will never forget that day, as Mattie worked hard on these items. I was literally removed from the child life playroom in the hospital for hours, so Mattie could create without me watching! When I was invited back into the room, Mattie's art therapist captured the  moment you see here on camera for me. 


Quote of the day: It’s better to be a lion for a day than a sheep all your life. ~ Elizabeth Kenny


Yesterday I clearly twisted my back the wrong way, and now I am dealing with non-stop muscle spasms. Thank goodness for Advil, otherwise I wouldn't be able to move at all. Should make for a fun day sitting still tomorrow on a cross country flight. It has been unseasonably cold in Los Angeles, I am talking about temperatures in 40's in the morning and night. Not to mention rain. I was very worried about my parent's house and the impending rain this week, but fortunately the forecast has changed and now they will only receive two days of rain, rather than a week's worth. Rain of any kind, is a major set back for the clean up and construction at the house. It is hard to leave as I know my presence makes a difference, if I only could split in half.

Meanwhile on the Foundation front, the Association of Pediatric Hematology/Oncology Nurses announced our Mattie Miracle grants today. We are offering three $2,500 grants, specifically to provide funding for nursing evidence-based projects that implement into practice the recommendations from the Standards for the Psychosocial Care of Children with Cancer and Their Families.



To learn more, check out these links below:

Mattie Miracle Grant Opportunity

More Specifics on how to apply

Sunday, February 10, 2019

Sunday, February 10, 2019

Tonight's picture was taken in February of 2009. Mattie's school delivered him boxes filled with Valentine's and this huge lollipop! I am not sure Mattie ever opened and ate that candy, but I know he absolutely loved holding it and showing it off to his nurses.



Quote of the day: Anyone who lives within their means suffers from a lack of imagination. ~ Oscar Wilde



Tomorrow is my last day in Los Angeles. I wish I could say that we made a lot of progress in a week. But it is clear that my parents will be out of their home for at least a month. I feel tired and achy tonight, so I am signing off and leaving you with Mattie's adorable smile. 

Saturday, February 9, 2019

Saturday, February 9, 2019

Tonight's picture was taken in February of 2009. That afternoon, we happened to be in the child life playroom. Mattie received a kit from a friend, that when assembled made a mini volcano. Mattie was always up for creating or taking part in a science experiment. So literally in the middle of the playroom, we had an eruption of lava. You will notice Mattie's awkward arm movements. Unfortunately after Mattie's surgeries, he had a very limited range of motion. But regardless, Mattie found a way to play and engage with the world. 


Quote of the day: The trick in life is learning how to deal with it. ~ Helen Mirren


It was another FULL day! To top it off, the hotel is swarming with teenagers. They were all here to attend a dance team convention. Apparently this event is housed at this hotel every year. Honestly it is so disruptive that I feel the hotel should warn its guests prior to booking rooms. Why? Where to begin! There are hundreds of teenagers everywhere. They are running around and making noise  at all hours of the night. They are practically eating the hotel out of food, and let's not talk about their manners at a buffet. With grabbing food off of trays with their bare hands. At 7am, I heard music blaring outside my window. It was one of the dance troupes practicing their routines! If you think I am complaining, you should have a chat with the hotel staff who have to serve and pick up after these young girls! At around 11am today, I had ENOUGH. I went with my parents to the front desk and demanded to talk with the hotel manager. The manager handled what we were saying very well and not only gave us certificates for free meals, but also added several thousand reward membership points to my mom's account. The hotel won't return to normalcy until Monday. 

Meanwhile, we went back and forth to my parent's home to check on the progress of the demolition. As of now, their entire family room's wooden floors and sub-floor have been removed. Dehumidifiers are going in this room 24 hours a day, and the hope is all the mold has been captured, removed, and the what remains is drying. Yet more rain is predicted to Los Angeles next week. Which is truly a serious issue, because the family room's exterior and interior walls can't handle more water. For my parents, being relocated from their home is very disruptive, and it leaves them coming back often to pick up mail, pay bills, return phone calls, connect with contractors, do laundry, and the list goes on. However, entering the house isn't always the best decision, considering there is a lot of dust, debris, and the smell of stagnant water in the walls that is drying. 

To add insult to injury, tonight we went to see a play, Anna Karenina. It was based on the novel by the Russian author Leo Tolstoy, who first published the book in 1878. Many authors consider Anna Karenina the greatest work of literature ever written, and Tolstoy himself called it his first true novel. 

A complex novel in eight parts, with more than a dozen major characters. It deals with themes of betrayal, faith, family, marriage, Imperial Russian society, desire, and rural vs. city life. The plot centers on an extramarital affair between Anna and dashing cavalry officer Count Alexei Kirillovich Vronsky that scandalizes the social circles of Saint Petersburg and forces the young lovers to flee for Italy in a futile search for happiness. Returning to Russia, their lives further unravel.

Either it was my mental state or this production. But the story was convoluted, complicated, dark, and I frankly did not see the moral message. I have heard it described as a love story. I did not view it that way at all, or perhaps it just greatly differs from my notion of love. Nonetheless, it was not uplifting and by the intermission, we had enough and left. We were not alone.