As the month of July officially opens today, I am reminded of memories of the 4th of July holiday over the years. In the Johnson house July has some important dates for us. Both Bill and Kathryn have birthdays in July, exactly one week apart from each other. Kathryn was due on July 4th so there will always be a sense of connection to the 4th of July for that reason, along with many others. Personally, I love the spirit and festivities of the 4th of July and always look forward to celebrating with family, friends, fireworks, and food. In 2016, Ellie underwent treatment for MDS which turned into AML, endured innumerable medicines, chemo, transfusions, and much isolation. Her hospital stay for treatment began in February 2016.
By July 1st 2016, Ellie had undergone one stem cell transplant, a relapse, and was preparing for her 2nd transplant later in the month. The days she was inpatient in the hospital were in the hundreds at that point, and we were looking ahead knowing that it would at least be another 6 weeks in the hospital but likely longer. We had no idea what was ahead of us. So as I reflect back on this time, I realize how important this break really was for our family. Ellie was sent home from the hospital for various reasons for approximately a 2 week break, but looking back, I think the doctors knew our family needed some time at home and they had an idea of what journey was ahead. So in July of 2016 our family spent about 2 weeks in isolation at our home and for the 4th of July we painted our nails, made the best of our time together at home, but this definitely wasn’t a usual 4th of July for us. And, the journey ahead was a cloud over our lives. A very special friend of ours made a connection that created memories that we will have forever.
Girl time! Painting our nails!
Our friend Angel has shared that story from her perspective….
Every 4th of July I am reminded of a day that made such an impact in my life. I had the opportunity to make sure a very special family got to experience a special night. Ellie’s immune system was way too compromised to be out around people but her parents so wished she could experience fireworks that year. For once she wasn’t in a hospital and it would be so amazing for her to watch some fireworks. I reached out to the owners at Sabine Creek Ranch who were hosting a big Fourth of July event and they were amazing. They were immediately moved to help accommodate her and made sure all the employees were aware of the special parking spot just for her. When the Johnsons arrived they escorted them to a parking spot designated just for them to have a front row view to all the festivities. When I saw them I was so excited to see that happy girl's face lit up with glow sticks from inside the minivan. While all the other kids ran around squealing and playing they were confined to the van. I got to get up close with glass between us and wave and giggle with them and for a brief moment it was joy. To see her face when she saw the fireworks go off was priceless!! I am forever grateful to see that reaction. That childlike wonder. And I am reminded to seize the moments. Make them count. And go make the memories, those are what last forever.
I love you Johnson family. Forever friends, Angel Brown
DitchTheBricks
“Dare to dream differently”
Fireworks….here we come!
Such incredibly bittersweet moments here.
“As you prepare for your holiday in uncertain times such as this, our Hope is that you find some JOY! ”