NameSilo

5 Year Old Daughter Diagnosed with Leukemia...

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Domainer Since '95 #oldschool #orjustoldTop Member
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So... I'm not usually one for this kind of stuff, but my 5 year old daughter, Phoebe, was diagnosed with Leukemia less than a week ago. We went from bouncing little girl to this in literally the blink of an eye. Watching fireworks under the stars as family on Saturday the 9/5 to Sunday morning at the ER because she couldn't walk, screaming in pain. We waited through Labor Day (because no surgical teams work), to getting confirmation of Leukemia via bone marrow and spinal tap on Tuesday afternoon. Chemo started immediately after Tuesday evening.

Today was a particularly bad day... and I was just taking some time to check in on the forum to find a little normalcy, yet it's not that easy... Perhaps looking to hide from it by looking here, I realized I should share it, instead. So I invite you all to follow our fight with our little girl... Sharing the "journey" thus far has been one of the things that's helped us keep our sanity. Writing about it therapy for my wife and I.

http://facebook.com/FriendsOfPhoebe

Of course, the domainer in me nearly instantly setup http://www.FriendsOfPhoebe.org to point to that. Quasi-thanks Uniregistry for making that thoughtlessly easy... except, what's up with the mobile over there? ;) Bad, bad, bad -- excessively hard to do one handed while at the hospital on my iPhone.

... Happy thoughts, good vibes, well wishes, healing prayers -- we're thankful for all of it.

Take an extra moment to hug your loved ones be they kids, parents, family or friends. Call your kids, call your parents, call your friends --- whatever. Seriously. Do it. I've seen it said before, I've read on forums from these times of tragedy... and sometimes I've done it, sometimes I've ignored. This time, you should do it because I'm telling ya -- you really never know.
 
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AfternicAfternic
I'm really sorry to hear about your daughter.

I hope all goes well.

:(
 
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happy thoughts, good vibes, well wishes, healing prayers -- we're thankful for all of it.
Positives thoughts and prayers from me..wishing you and your loved ones the best, speedy and painless recovery
 
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Sad story and I feel your pain.
 
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Just had a look at the Facebook page. What a sweet little girl. Please give my love to Phoebe and tell her Paul from England says hiya ;)

Best,
Paul

Edit. Hey - Just read your post on the FB page that says the MRD results are negative. Great news :)
 
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Thanks so much @Paul123 ...

We were super excited about the negative MRD for day 28. We had still gotten bumped to the "high risk" track because Phoebe's day 8 MRD came back at 1.1% ... they were looking for less than 1%. We're trying to take that in stride as she was literally just barely over the threshold. Because of that, she's going to get more aggressive treatments over the next 2 cycles and perhaps that extra will be what keeps her from a relapse. *fingers crossed*

Having just completed the first 28 days, which people say are the worst of the worst, I was feeling pretty well "put together". Then we went in this morning and the doc spewed out the next 2.5 years of chemo treatment protocol, which includes (of course) a lot of chemo and more than a few pre-planned hospital stays that, for whatever reason, I hadn't expected.

It was all a bit overwhelming. Like crazy "run away and scream" overwhelming. Trapped inside of a tiny box claustrophicy kind of overwhelming. I took a breath and realized that running away screaming wouldn't help anything and I'd just look like a fool to all the nurses. ;)

So... mindset moving back to "one day at a time". That makes everything so much more manageable.
 
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Very sorry to hear this @dictionaryof. Thoughts and prayers with your daughter and your family. Here's to a speedy recovery for your daughter. Keep fighting the good fight.
 
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I know you will get through this as a family and so will Phoebe. For her sake STAY STRONG and POSITIVE. This will rub off on her.

I will follow this thread so please keep us updated.

I hope you said hiya to Phoebe from me. One other thing to tell her. I know it's a little way off but Christmas will be here soon. Santa is a personal friend of mine and, when I mentioned Phoebe, he told me he was going to be extra good to her this year as she has been so brave ;)

Best,
Paul
 
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I feel your pain man. I hope you make it through this, keep your head up and be strong! .

She'll make it through this...
 
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I am sorry to hear about this. I am not even religious but my prayers to you and your family. I hope the best for you guys. I am a firm believer nothing bad should ever happen to an innocent child. Regardless no excuses for lifes cruelty at times.
 
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I hope she'll recover swiftly and have constant health forever&ever!
 
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Wish her Quick recovery. IJN.
Amen
 
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She looks strong, everything will be fine.:)
 
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Thanks for all the well wishes. We started the next phase of chemo today. do far everything is on track and textbook.
 
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My heartful and deep wishes and prayers for your child. She will return to normal within a month.
 
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I send you my best wishes and hugs from my two little daughters. They are about Phoebe's age. May the stars be with you all the way, all will be well.
 
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Terrible news.

Deeply sorry for you and your family. May God be with you and give you the power to fight on.

Stay strong mate..!!
 
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i have a nephew who had brain cancer at 12. he is now 16 and no sign of it. We had a few scares and I relate. Bless you and your family and just be as strong as you can.
 
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Thanks again for the kind words and likes.

We're about 2 months into the treatments now and she's responding really well ... "textbook" they tell us. She's starting to get some strength back in her legs and is walking a little bit again and smiling and laughing and that's all great stuff.

Living day to day and ignoring the future for now ... but things look well better than they did 2 months ago.

Appreciate all the kind thoughts and good vibes.
 
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Keep hanging in there, be strong and Phoebe will be in my thoughts and prayers! :-,
 
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