Sunday, August 6, 2023

Sunday, August 6, 2023

Tonight's picture was taken in August of 2009. Specifically August 6th. I know this exact moment in time. The day before we had found out that Mattie's cancer had metastasized   all over his body. On August 6th, we met with his doctor to discuss end of life care. As you can imagine, it was a hateful conversation and all I could think of was modern medicine is NOT very modern! Children should not be dying from cancer. We met with Mattie's doctor without Mattie being present. While we were in the meeting, everyone tried to occupy Mattie. In fact, Kathleen (kneeling on the left) was Mattie's nurse from the in-patient unit. Even she came downstairs to the outpatient clinic to lend support. What you see in this photo, was Peter and me coming back from the meeting with the doctor. Mattie presented us with things he created while we were away, and as you can clearly see, Mattie was studying our faces to try to read what was going on! Needless to say we were absolutely shell shocked. 

Quote of the day: There are no great people in this world, only great challenges which ordinary people rise to meet. ~ William Frederick Halsey Jr.

One of the wonderful things about where we live in the animal life. We get daily visits from hummingbirds. I absolutely love watching these delicate creatures. They come visit us every spring and summer and they seem to just know the location of the feeders! They happen to be finicky about their sugar water, and want fresh water every two weeks. This weekend I cleaned out both feeders and gave them a new supply. You should see these birds as I take down the feeders, clean them, and then put them back up. They buzz all around me during the entire process and eagerly await me to come back out to replenish their food! 

Peter spent all weekend trimming bushes and trees. Given that we have a lot of greenery to maintain, this was a huge job. Thankfully this is something Peter likes to do, but it is labor intensive and with the heat and humidity, it can be overwhelming. 

Of course no day would be complete in the mid-Atlantic region without a storm! With our high heat and humidity, we practically are assured an afternoon storm each summer day. Storms like this used to bother Sunny, but the chemotherapy has definitely affected his ability to hear. So our once frightened pooch, is now calm as a cucumber. 

One of the projects Mattie Miracle is involved in is a nationwide research study with Nemours Children's Health (Delaware) and Momcology, with funding from the B+ Foundation. We are excited that this three year long project will assess the implementation of the Psychosocial Standards of Care at treatment sites around the Country. Over the last two weeks, we have worked on creating a special QR code that directs people to the published Standards and then created this infographic to illustrate the four areas of focus within the Standards as well as the specifics covered in each area. We made this infographic into magnets and these magnets will be used at conferences and shared with psychosocial team members at hospitals.