Asking for help, once again

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.

Florence meets Santa

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.

(I know.)

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.

There are details from her grandfather and others on the COTA for Florence blog, and now on the Team Florence facebook page if you’re inclined to follow or spread the word.


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.


50 thoughts on “Asking for help, once again”

  1. Prayers for Florence and your family. Thank you for the update.

  2. Donated, and I’m holding Florence and her family in my thoughts. You’re right – it’s just impossible not to put my mommy self in Florence’s mommy’s shoes. My older daughter is 7, and my younger is almost 5. There but for the grace of whatever you believe in…

  3. I wish I had money to help. All I can send is positive thoughts your family’s way. My boy was diagnosed with Leukemia just a few weeks ago and I’m really hoping he won’t need bone marrow. It’s just awful when kids get sick.

    I’ll be keeping Florence in my thoughts.

  4. How wonderful that the donations are flowing in so fully!

    Does the family already have a bone marrow donor? We’re all getting tested for my husband’s aunt. I encourage everyone to get tested NOW, before you have a loved one who needs it.

  5. I spent 10 years working with pediatric bone marrow transplant patients so this story speaks volumes to me. I worked with the rarest of diseases as a volunteer at a research hospital. I’m in NC close to Duke and work with the Ronald McDonald House of Durham so let me know what I can do for your family. There is a “Best Buddies” program at Duke that can provide support to your family. My youngest son is 6, and a friend’s daughter of the same age was just diagnosed with leukemia. This sort of news rocks me to the core. These stories are simply heartbreaking.

    1. Oh thank you so so much Ilina. I’ll forward your generous offer along. It’s amazing that you can devote your life to that for 10 years. I can hardly think about it for 10 months.

  6. Saw this on Twitter and I’m so glad I came by. What an incredible little girl. Another birthday is such a gift. I’ll give if I can. I also want to share that I’m in the donor registry. Have been for a couple of years now. Hugs and smiles to Florence.

  7. Tears, followed by a donation, then more tears, and now on to thoughts and prayers…

  8. Oh, my heart. I wish I could give a whole lot – that little girl deserves another birthday. I made a small donation, and I’ll spread the word.

  9. Will donate today and help get the word out. Not to mention major good vibes, prayers from the Red States.

  10. It’s because of stories like Florence that I’ve also signed up to be a marrow donor. I haven’t been called on yet, but I hope to be that person for someone, someday.

  11. I will definitely make a donation and spread the word. I love Sadia’s idea of signing up to be a marrow donor. I’m an organ donor but never considered being a marrow donor. As a mother, the thought of any child’s life being cut short is more than I can bear. I believe very strongly in the power of prayer and will hold Florence and your family up in prayer.

  12. I am so sorry to hear about this.

    Do most people have to pay for organ donation transplants themselves? i.e. does insurance cover this? It frightens me to think that this is even an issue for families facing such a difficult time.

    Anyway, I will surely donate.

    1. My understanding is that an allogenic transplant can be in the $150-200,000 range. This doesn’t include donor search fees, compatibility testing, drugs, post-op care, and so on. If you have good insurance, they will probably cover 80%.

  13. Just donated. Your article brought tears to my eyes, and put a hundred trivial annoyances of my day in their rightful place. My heart goes out to Florence and her family.

  14. I am signed up as a bone marrow donor. I wish with all my heart that I were a good match for her. I would donate in a heartbeat without hesitate. So far, they have never called me. I pray fervently they find a donor for her, and that it helps.

  15. My thoughts & prayers to Florence and her family.

    To everyone else, I ask that even if you cannot contribute financially to this little girl, PLEASE join the bone marrow registry – It’s free and easy to do. Paying for the transplant is only part of the process. The patient needs a match. The National Bone Marrow Donor Program estimates that 50% of the 10,000 patients needing a marrow transplant actually receive one because of the lack of matches, and especially those with diverse racial and ethnic backgrounds. Join today and potentially save a life like Florence’s.

  16. I don’t know much about this story– just linked here from twitter. But I think it was fate that I did. My own mother, named Florence, is fighting for her life right now and may well require a bone marrow transplant some time in the next year (acute leukemia). So this strikes me, deep down in my heart and my soul. I am not someone who prays in any conventional way or to any one god, but please know that I am send out good wishes and positive thoughts to little Florence and her family.

    1. Funny how the universe works sometimes…

      I wish you and your mother the very best. Thank you Deb.

  17. I will donate after my next payday (money is tight) but I went to a local marrow registry program today. I hope I get a call to be a donor very soon.

  18. My son (8) just came in as I was reading this. I explained the situation. He offered $14. We hugged.

  19. really puts into perspective all of our miscellaneous bitching and moaning.


    makes me want to remind everyone how impt it is to be an organ donor, too.
    I lost my dad to kidney failure, and although he was not a transplant candidate – I saw many lives get better through transplant.

  20. A ten-year-old girl in our neighborhood had a heart transplant four years ago. Today she is strong and full of life. Oh, I wish the same outcome for dear Florence. Thank you for letting us help her family, even if it’s just a little bit (donated).

  21. Done. Sent donation, prayers, strength & wishes to Florence and her whole family. . . .

  22. this really hits home. i, too, was quiet on my little patch of the web over the holidays b/c i was busy managing a million appointments to rule out a bone tumor as the root of my 2yo’s mysterious medical symptoms. visits to sloan kettering. blood work. (so much blood work.) xrays. then anesthesia and a bone scan to check for a tumor (which, thankfully, we learned in early jan, came out clear). what we went through was the tiniest fraction of what so many families and kids like florence go through. being exposed to that—and wondering if we’d be joining the many indescribably strong families we met at sloan kettering cancer center or if we’d be lucky enough, for some inexplicable reason, to never need to go back there—was profound. People are amazing, strong, miraculous. Thank you for sharing this and letting us do a little something to help Florence. This is the stuff that hope is made of.

  23. All I can think of is this: “What if this were MY baby?” Would I want you to donate? HELL YES. Would I want to to ask everyone you knew to help? HELL YES. Would I want you to move heaven and earth to share this message? ABSOLUTELY.

    There you have it. I’m in. Donating now. Asking now. Sharing now.

    Cancer effing sucks.

    Much love, and many prayers for this lovely girl and for your family, Liz.


  24. Best wishes for Florence! Keeping her gorgeous smile (and her parents) in my thoughts today. Sending prayers and hugs to all.


    (I hope you don’t mind my posting this here. I can’t log into FB at work. )

  25. Above is the link to my son’s caringbridge site. He was diagnosed at eight weeks with a rare blood disease, Hemophagocytic Lymphohistiocytosis. He started chemo at that point and had his life-saving cord blood/stem cell transplant when he was six months old.
    He’s now a happy, healthy almost-eight-year-old boy. There are still miracles to be had.
    My heart goes out to them. The pain of the process still keeps me up at night.

  26. I will spread the word and pray for the fast recovery of Florence. Just be strong and keep the faith!

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