A Ribbon

June 1, 2013

During these last few days, I have looked for glimpses of hope. My dreams for Julia, my precious gift, have gone from thinking of years of future birthdays, graduations and celebrations to those of praying for a few more days, a few more moments for “I love yous”.

We have met with the doctors and know that all we can hope for is a miracle. Plans for treatment are only to relieve the symptoms – radiation started on Wednesday and will continue for 10 days to perhaps shrink the tumor followed by another drug that may allow us to steal a few more days or weeks.

Julia has developed a dry cough, slight at first, but increasing in the difficulty to control. We don’t know if this cough is caused by the radiation drying her throat or by the tumor that continues to grow and fight for space in Julia’s chest. Doesn’t this beast called cancer realize that it won’t win – that in its quest for control, it too dies? For these last years, Julia has fought this monster and we have prayed for a cure. Now I hope for some kind of crazy symbiotic relationship to develop – that the cancer cells suddenly realize that they need Julia for their own survival.

Everyone is home now, James arriving Tuesday from college and John and Amanda flying in last night. Julia loves them so much and her smile lights up when they enter the room – moments of laughter when they act silly or make a funny face.

As always, Julia has been surrounded by love these past few days. With visits for a purple pedicure and for her favorite chocolate chip cookie cake to thumbprint drawings with her buddy Jake and an impromptu “Dirt” beach party.
This is the best medicine.

Tomorrow is Olympic Day at Julia’s school – one of her favorite days of the year. Since she can’t be there, the entire second grade class will be wearing a ribbon for her – a zebra print ribbon with hot pink tips, just like one of her favorite hats. It is so Julia. She smiled when she saw it and somehow knew she would be there with all her friends.

So as Julia sleeps peacefully now, thanks to the morphine, I watch each breath and write this update. If things stabilize and we can get everything set up, we plan to get Julia home this weekend – home to see her beloved dog, Sophie, and to be with her family, getting away from the hospital for a few days. We will then come back to the city for radiation next week, staying at the hospital to make things a bit easier on Julia. We can then get some day passes to visit a museum or to go out to lunch.

It is a day at a time, each day treasured more than the last.

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