See update below (2/8)
It’s been just nine months to the date since I’ve posted about Florence, my brother’s six year-old niece. Some of you have been following her story through Caring Bridge updates, but for the rest of you, it’s complicated. As her parents write, her disease is so rare we’ve started calling it Florencitis. Her doctors term it autoimmune encephalitis.
The details are not easy.
Nine months later, I remain absolutely amazed about the outpouring of support, prayers, wishes, white light, and remarkable generosity of spirit that has been directed in the way of a sweet young stranger, who you know only second-hand through my blog and hers. It is truly the very very best of this community.
Now it’s time for an update.
You may have noticed that I was relatively silent over the holidays. In part it was because I was busy enjoying family; in part it was because I couldn’t shake the sad news about Florence that cast a heavy shadow over our celebration.
Despite her failing health, Florence was permitted to head home with her family, a better place to spend what her parents were told would likely be her last Christmas.
Her last Christmas.
Those words alone so crush my heart, even writing them now through tears. How could it not? How do we as parents not put ourselves in the shoes of every other parent facing their very worst nightmares?
We all took comfort in the fact, however, that she would be home with the parents and sister and grandparents who love her.
Only days later, that plan changed.
In an effort to save her spirit, along with her body, the kind hospital staff at Duke arrived at her room bearing so many gifts, they evidently overloaded the bathtub and spilled out onto the tiled floor. They sent cards. They sent flowers. They sent stuffed animals. They even sent a Santa. They made Florence a Christmas as best they could, determined that she would see more magic that day than sterile walls; more magic than tubes and posted signs and LCD monitors could ever provide.
She is still in the hospital.
I know that these last few weeks have been a trying time in the blogosphere for many of us–children in need, friends in need, husbands in need, families in need. At the risk of adding more burden to our already heavy hearts, I ask for help once again.
Florence now requires a bone marrow transplant. The family is raising money to help with expenses, something they do with great hesitation. If you have it in your heart to donate $50, $10, $5 or whatever you can, I can only assure you it is going somewhere much needed. It’s tax-deductible and 100% goes directly towards her transplant, which will cost $50,000.
For every time we’ve ranted on social media channels about the things and the laws and the corporations that may be hurting our children, this is one thing we can do that may help one.
And if all you can send are more thoughts and good wishes and prayers and love, that is all equally welcome.
I still remember this amazingly poignant ad headline a colleague of mine once wrote for a children’s hospital: For Beth’s seventh birthday, she got exactly what she wanted. Her seventh birthday.
I guess that pretty much sums it up for me.
UPDATE 2/8: The transplant went well this morning and now, we just sit back and wait for the stem cells to do their thing. GO stem cells go! And thank you for all the amazing words and notes of support and encouragement…and more. For someone you don’t even know. You are all so very very good.