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fevers, candy & zebras July 3, 2009

Posted by Amanda Kern in Uncategorized.
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After seeing Talia in such great spirits and health last week I was definitely shocked to receive a call from Desiree yesterday informing me that Talia was getting admitted back into the hospital. Desiree let me know that she brought Talia to the emergency room after she began running a high fever. Once at the hospital she ran a temperature over 105 so she was admitted for testing. I instantly came to wonder how in the world this energetic child could suddenly begin feeling this badly. Desiree reminded me that this was not an uncommon occurrence with cancer patients. The last 2+ years they have come to expect that moments like this may happen.

After speaking with Desiree again this morning I decided to take a trip to Arnold Palmer to visit with Talia & Desiree. Since yesterday Talia’s been on antibiotics, which are helping her feel a little better. Though she definitely wasn’t her typical spunky self, by the time I arrived she seemed to be feeling a little better than the day prior. On my way to visit her I made sure to pick up a few of Talia’s favorite candy, blow pops, which seems to have cheered her up a bit.

Talia

Talia

This is the first time I’ve visited Talia in the hospital since last fall and I have to admit I’m glad to see she’s much more comfortable with me taking pictures of her, even when she’s not feeling the best. She’s come to understand that by sharing her story she’s not only helping herself but she’s helping so many others who may also be struggling with neuroblastoma. So I brought my camera to the hospital to take pictures of her, just as hesitantly as last fall, but thankful that she was such a great sport. We spent some time talking about some her hopes and aspirations – typical dreams to hear from a child. She was excited to tell Desiree and I how her and her friends wanted to start a band someday and how she had already written two songs.

chatting with Talia in the hospital

While I was visiting Talia a candy artist stopped by to make Talia handmade candy. This lady works at Epcot making candy but volunteers occasionally to make candy for the kids in the hospital. Talia was not able to attend the event in the hospital when she was making candy for all the other children because of her fever so the lady was kind enough to stop by her room to make Talia candy. This Japanese Candy artist is believed to be the only woman candy artist and one of only 15 Japanese candy artists who make this type of candy. She spun candy with her hands and then shaped it with her hands and scissors. The candy temperature is over 200 degrees and so we were told that overtime her fingerprints have completely worn off of her hands. It was amazing to watch the candy creation in person. She let Talia choose from a variety of flowers and animals – Talia asked her to make a Zebra candy.

a visit from the candy artist

a visit from the candy artist

a visit from the candy artist

a visit from the candy artist

a visit from the candy artist

a visit from the candy artist

Why a Zebra? Yeah, that’s what I wondered. Of all the flowers and creatures Talia chose a Zebra. After the candy artist left the room Desiree told me all about Talia’s interest in zebras. She reminded me that even her room was decorated with some zebra decor. Desiree informed me that when she first learned Talia had cancer not only was she in shock but the doctors were also quite surprised. Neuroblastoma is a very rare type of cancer and is usually diagnosed in very young children – often in the first couple years of life. Talia was diagnosed at age 7 which doctors said made her case that much more uncommon. It’s been reassuring to see Talia making such a strong recovery, and is even said to again be cancer free, but we know there’s still so much to remain concerned about. According the Magic Water project:

There is no known cure for relapsed neuroblastoma. When neuroblastoma has spread at diagnosis and a child is over the age of 2, there is less than a 30% chance of survival.

Desiree said that the doctors told her that seeing Talia with neuroblastoma at the age of 7 was like running into a zebra. Aside from being at a zoo – how often does the typical person run into a zebra? Not often, right? I imagine this special connection she has with zebras certainly will keep us all believing that she will continue to beat the odds.

During my visit with Talia she had a few visits from nurses in the brief time I was there. She is currently under IV fluids and antibiotics which are being fed through her access line in her chest. She told me while I was there that the IV line was so cold – she kept curling up her pajamas to help keep the cold IV wires from touching her skin.

talking to the nurse

Talia's hospital band

Before I left the hospital staff came into weigh Talia. She weighed in at 50lbs 6oz. She’s lost a few ounces in the last day, which considering how she’s been feeling isn’t too terrible.

weighing in

weighing in

weighing in

Talia also proudly shared her access line. She’s been under treatments so often between medications and chemotherapy that she requires an access line in her chest that provides a stable way for her to receive treatment.

Talia's access line

Desiree mentioned that so long as her fever is gone and doesn’t return by tomorrow that Talia should be home for the 4th of July. My fingers are crossed that Talia will get to enjoy independence day and fireworks away from the hospital tomorrow!

Comments»

1. Erica Reynoso Montalvo - July 3, 2009

Talia is so beautiful. I’m glad you’re photographing her and telling her story. Reading her story makes me cherish my Isa & Lili that much more. Talia, I hope with all my might and heart and spirit that you get better and I want to wish you all the healing power of this little song that my Mami and Papi sang to me when I was hurting, and that I sing to my girls when they are hurting…”Sana, sana, colita de rana, si no te sanas hoy, te sanaras ma~nana…)…

2. beth - July 5, 2009

Nice blog. You have got a cute kid like a rose in my garden. Talia is so beautiful. God bless talia. He will give you all the healing powers. Get well soon.

3. Candy Miyuki - July 6, 2009

Hi!! I’m Candy Lady Miyuki!!!Thank you for your beautiful photos.
Talia is so beautiful !! If Talia will go back to home, I can make a candy in your house !! You can’t wait candy party !! See you soon !!
( Please send me e-mail about her party !!!)
I was link your beautiful photos in my blog , but my blog is Japanese.sorry…. But, so many Japanese my friend, God bless Talia.
We love Talia!!!!!!🙂 🙂

4. Marsha - August 22, 2010

I hope you don’t take this as a lecture; not many people know this. I got this info first from Desiree. Sugar feeds cancer cells, and most kids relapse within a few months following Halloween. It’s hard for a kid to be strictly sugarfree, but maybe you have some sugarfree recipes?

I love you for loving Talia.

Thanks!


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