A Sign and My Thoughts

The day after Julia passed away, John and I had to go to the funeral home to finalize arrangements for Julia’s memorial service. As you can imagine, this was at my lowest point. I did not think I could make it through the day. I procrastinated, doing other chores around the house rather than get dressed for the meeting. I finally rushed up the steps having only ten minutes to dress. Running into our room, I threw open the closet door and there it was; out from the multitude of hangers to my right flew a scarf. Grabbed by the wind of my haste, it billowed out from its long ago stored home between the belts and jackets as if waving at me. There is was; a zebra print silk scarf with a hot pink

The Fight Continues

For those of you that met Julia, whether in person or through these pages, you understand how open-hearted and unselfish she was. From starting her own Relay for Life team at 5 years old, to donating all of her 7th birthday party gifts to the clinic, to asking that a school fundraiser for her be directed to help children with cancer at CHOP; Julia always put others first. Julia wanted to help her doctor’s find a cure for cancer. And more importantly, she wanted to help other children and their families as they battled this horrible disease. Julia always had a vision of what she wanted. We need to continue her fight. It is for this reason, that we have started a foundation to honor Julia’s dr

The End, the Beginning

Julia had a difficult morning, her breathing was more labored and her cough continued. More medicine to make her comfortable. As I snuggled beside her, I asked “How is my Star Girl? Julia struggled to talk, and in a whisper I leaned in to hear as she said “I fight evil.” “I know you fight evil, that’s what Star Girl does”, a banter that we often shared. She fought for her next breath, “I can’t give up.” “It’s okay to stop fighting, Daddy and I will fight for you. You know we all love you so much”. “I know.” Julia got her Angel Wings this afternoon at 2:05 PM. She was home, not alone, and surrounded by family. We have all cried too many tears, questioned why too many times. All I know is that

Moments

Julia has been sleeping most of the time; a combination of the pain meds and needing to conserve her energy for breathing. The doctors are changing her pain medication to a Fentanyl patch that will give her more constant relief and we hope that it will give us a bit more awake time. Sunday, Julia developed a cough and the doctors have now added three new medications (a steroid and nebulizer treatment to reduce inflammation and swelling, along with a cough suppressant). It is a struggle for Julia to talk, balancing breathing and speaking. Most times, she speaks in a whisper and we get only word at a time. “Yes”. “No”. “Kiss”. “Cuddle”. Today, Julia spoke a bit more, piecing together a few s

A List

Late at night when I can’t sleep, I still find the need to write. Originally, I started this blog to keep family and friends informed of Julia’s treatments, but now I find it to be my comfort. I am not sure if it is my way to handle this nightmare or to somehow ensure that there is something left, some record of my sweet, Julia. Perhaps, it is a bit of both. It has been a hard few days. Julia has been sleeping most of the time – a side effect of the pain medications. Her breathing is more labored and she has been using oxygen since coming home from clinic. There have been a few coughing spells and Julia even gets a bit winded just speaking. It is so hard to watch this happen. I wish I could

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Julia's Grace Foundation  |  PO Box 1081, Royersford, Pennsylvania 19468