My children show No Evidence of Disease, which is something that I will never, ever take for granted, with the understanding that we will always live in three month periods of grace. But even better than simply dancing with NED, Brent is making strides in PT, becoming stronger and more balanced. I am trying to do the same, both literally and figuratively.
But outside of the medical setting, we have met others who have used their time and talents to help make it possible for us to get to this point, or certainly make it a bit easier. For example, pilots from Angel Flight have frequently flown us to New York. This gift of time and resources has made it possible for Dan to conserve his sick time, saving it for chemo and our various surgeries, while Brent and I traveled to NYC for follow up appointments. This generosity and kindness has mattered a great deal to our family and will never be forgotten.
The stylists and the photographers that volunteer with Flashes of Hope donate their time at the hospital and have an enormous impact. They help children to feel special and capture moments of beauty, tenderness and love. While the photos are black and white, the experience is a bold splash of color in what can be an otherwise grey hospital existence. It is a remarkable thing that they do, and it makes a difference for children with cancer on multiple levels. We were once again touched by people who we did not know, directly helping our family
On a more personal level, our friends have been exceptionally understanding of how flaky we can be. I have made plans, and abruptly cancelled more times than I can say. We have failed to attend weddings and other important events for people that matter a great deal to us. It is a journey of long suffering, and patience, being a friend to the Ramers And we have been blessed with some amazing, long suffering friendships.
A faraway mutant friend messaged me as she travelled to a military hospital in Hawaii. Her daughter, married to a serviceman, was diagnosed with breast cancer and was having a double mastectomy this week. Her other daughter recently had two brain surgeries and she travels back to the mainland next week to manage the chemo and radiation schedule that they are still devising for her. A third LFS positive daughter, had cancer while pregnant, as did the baby. It reads like fiction, but this is LFS reality. My heart goes out to Joann Million, as nothing about what she is doing is easy.
I thought about what I might do to be helpful. I actually have a dear friend in Hawaii that knows Tripler Hospital all too well. However, this is because Jen is currently getting treatment there for metastatic breast cancer and is hardly in a position to help. The Mallory's have four beautiful mutant children, which can only be a constant worry and scheduling nightmare, medical and otherwise, but a blessing nonetheless. I very much would like to be in Hawaii, and not because it is paradise, as I teasingly refer to it.
I learned of the passing of Jacob Tholl, a father of 5, after a 19 day struggle following an electrical accident at work. My heart is heavy as I think about how this family's holidays are so different than what they had anticipated.
My friend lost her father after a long battle with Alzheimer's this week. While the holidays are supposed to be joyful, they can be difficult as well. My prayers are with all of these people this holiday season, the juxtaposition of struggle in its various forms against the backdrop of Christmas and tinsel. It is hard sometimes.
I finally managed to work out the scans for the kids. We do not intend to spend time with doctors until January 6th. I am trying to relax, and to enjoy our Christmas without an immediate concern about cancer or major surgery hovering over it. For the past two years, that worry hung out with the angel atop the tree, also gazing down on us, but with a far less benevolent look. It is hard to shake that feeling that a shoe might drop, having experienced a tornado in a shoe factory.
But also in America, the spirit of thanks bleeds into the spirit of giving. And while everyone speaks a different love language, I believe that this time of year gives witness to a conversation that is dominated by love.
When we offer the gift of our talent, like the little drummer boy, wonderful, beautiful things begin to happen. Everyone has a talent, some sort of gift to offer: the hairdressers at the hospital, photographers, pilots, those skilled at cooking or baking, something as simple as taking the time to read to a child, or to visit with a veteran, singing in the streets if you have such inclination...the spirit of giving does not need to be commercially driven, and does not, most thankfully require money.
It is giving of yourself.
Once you reflect upon your blessings, think about how you might turn and transform these gifts, in order to help others. It might be financial, it might be a service, it might be kind words. Because it is not what we have in this life that is important, but what we do with what we have been given. I feel like we Ramers have been given so much.
I met with a hospital administrator this week who said to me, "As much as we accomplish, I learn how much more we need to do for our patients." Rather than being overwhelmed by this notion, he was inspired. I seek to follow this example, and to do as much as I can, with what we have been given.
And to do it joyfully, compassionately and wrapped up in love.
Should you want to help the Million family that I mentioned above with travel and medical expenses, there is a link below:
The Mallory family accepts help here: http://helpinghandsforthemallorys.blogspot.com/
And finally, donations may be sent to help Jacob Tholl's family here: