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Asking for help, once again

2.02.2012

in lovely love my family

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 shards of brilliance… read them below or add one

Holly February 2, 2012 at 1:18 pm

You, Florence and your family are in my thoughts and prayers.
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Beth B. February 2, 2012 at 1:30 pm

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

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magpie February 2, 2012 at 1:34 pm

Done.
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abbeyviolet February 2, 2012 at 1:34 pm

Done + thoughts prayers and hope.
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Glennia February 2, 2012 at 1:54 pm

Will spread the word. Sending love to all of you.
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Mom101 February 2, 2012 at 1:54 pm

Thank you so much everyone.

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Liz February 2, 2012 at 2:00 pm

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…

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Ewokmama February 2, 2012 at 2:06 pm

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.
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Kristin February 2, 2012 at 2:06 pm

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.
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Amanda February 2, 2012 at 2:07 pm

I’ll spread the word about Florence and keep you all in my thoughts.
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Dorf's Daughter February 2, 2012 at 2:09 pm

Thanks, Liz, for reminding us that it really does take a village.

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IlinaP February 2, 2012 at 2:10 pm

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.

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Mom101 February 2, 2012 at 2:12 pm

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.

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MommaKiss February 2, 2012 at 2:20 pm

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.

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leanne February 2, 2012 at 2:21 pm

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

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Amber February 2, 2012 at 2:30 pm

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.
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Michelle Lamar February 2, 2012 at 3:37 pm

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

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Boston Mamas February 2, 2012 at 3:38 pm

Just donated. And am sending peaceful and healing wishes to all.
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Sadia February 2, 2012 at 3:53 pm

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.
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Mom101 February 2, 2012 at 4:13 pm

That’s really really amazing Sadia.

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Portia February 2, 2012 at 4:30 pm

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.
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jj February 2, 2012 at 4:53 pm

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.
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Mom101 February 2, 2012 at 5:06 pm

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%.

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Tamara Heather February 2, 2012 at 5:18 pm

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.
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Mom101 February 2, 2012 at 5:49 pm

Thank you so much Tamara. It does put things in perspective, doesn’t it.

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Angela Beegle February 2, 2012 at 6:47 pm

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.

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Lynn February 2, 2012 at 6:51 pm

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 – http://marrow.org. 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.

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Mom101 February 2, 2012 at 7:42 pm

Thanks so much for this Lynn. Will spread the word.

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Michelle S. February 2, 2012 at 7:33 pm

Donated. Wishing Florence lots of love and healing.
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Selma February 2, 2012 at 7:35 pm

Will spread the word. Hang in there, Florence.

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deb February 2, 2012 at 8:14 pm

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.

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Mom101 February 2, 2012 at 9:10 pm

Funny how the universe works sometimes…

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

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Sheila February 2, 2012 at 8:49 pm

Done. Thank you for the opportunity to help!

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Susan February 2, 2012 at 8:55 pm

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.

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Jeanine Lisa February 2, 2012 at 8:58 pm

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

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Mom101 February 2, 2012 at 9:38 pm

Oh Jeanine, thank you so much. You should feel so proud. And hug him for me too.

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Rachel February 3, 2012 at 7:38 am

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

donated.

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.
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Mom101 February 3, 2012 at 11:27 am

I’m sorry about your dad. Thank you for the important reminder.

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Colleen - @amadisonmom February 3, 2012 at 12:51 pm

Donated.
I’m also signed up with Be the Match. Wish I could help with more than $.
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JIll February 3, 2012 at 1:16 pm

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).

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Mom101 February 3, 2012 at 1:50 pm

That’s beautiful Jill thank you and Mark. Of course we hope for the same.

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Jennifer S. February 3, 2012 at 1:29 pm

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

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Kelley February 3, 2012 at 9:39 pm

Done. Thanks for asking!
Thinking of Florence and her family, and you and yours.

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One Hungry Mama February 6, 2012 at 10:35 am

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.
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Shelly Kramer February 6, 2012 at 6:06 pm

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.

Shelly

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Jen G February 8, 2012 at 11:52 am

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

Jen

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

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Mom101 February 8, 2012 at 1:40 pm

Thank you Jen!

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Holly February 15, 2012 at 8:55 pm

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.

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Mom101 February 15, 2012 at 9:43 pm

Amazing Holly. Thank you for the link, and the hope.

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Ynna February 19, 2012 at 11:26 pm

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