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Talia’s cancer has relapsed August 17, 2010

Posted by Amanda Kern in Uncategorized.
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When I saw this message from Talia Friday evening my heart nearly stopped.

August 11-13th Talia went through scans in New York which came back on Friday August 13th indicating she has had her cancer return in two places. Talia’s battle with neuroblastoma has returned for a third time.

Though we all know Talia is one amazing strong spirited little girl, I don’t think anything, not even past experiences could have prepared her to have received this news. I’ve been told she’s in good spirits but as you might imagine it’s not easy for her to accept that the cancer has returned.

Desiree flew up to New York to be by Talia’s side during the scans and remains in New York as Talia begins her chemotherapy treatments. Knowing that one of the side effects of chemo is losing their hair, Talia expressed an interest in dying her hair blonde. Yes, our little diva friend seemed to have a little fun changing her hair color this past weekend. Desiree shared a few photos with me taken on her phone to help share with you all that Talia is in good spirits and definitely looks super with her new hair!

I spoke with Desiree again this morning, who thankfully is able to stay by Talia’s side during high dose chemo treatments. Talia started her first treatment this morning and will have more over the next few days. They’re anticipating that she will begin feeling the side effects soon. In the near future she’ll likely be needing platelets. It breaks my heart to know how quickly this news has changed things for Talia. Though I know she’s a strong little girl who has amazing support behind her, I can only imagine how devastating this news is for her, her family and all those who are closest to her. Though we know she will need the support medically to see her through the challenges ahead as she fights cancer again, now she needs our support more than ever before. Reading some of the facts of cancer and Neuroblastoma certainly make us all worry about Talia’s health, but if there’s one thing I know it’s that Talia is one resilient little girl. If anyone can beat cancer again it is her.

Since learning of Talia’s cancer they’ve since reestablished her port so that she can receive her medicine and IV fluids easily and regularly. Desiree sent me these two photos. The first shows her with her beside her backpack that holds her IV fluids. Rather than admitting her into the hospital they return to the Ronald McDonald house after her treatments with this backpack. The photo on the right shows Talia shortly after beginning her first chemo treatment.

Tomorrow is Talia’s 11th birthday. On her birthday they won’t stop chemo treatments. She’s likely to begin not feeling as well due to the side effects of chemo. But I think she knows just how loved she is and how much support surrounds her as she begins this journey once again against cancer. Hopefully everyone begins to say their prayers for Talia. Hopefully she’s able to make her birthday wish…I think we’re all wishing that soon she’ll be cancer free for good.

I anticipate many of you are just as concerned as I am want to know how Talia is doing as she fights cancer again. I will continue to update you all as I learn more through the blog and I have just established a facebook fan page to help support Talia and to also update you all. If you happen to be on facebook I encourage you to “like” the fan page to stay updated with how Talia is doing. I know Talia will enjoy seeing how many of us are out here routing for her to beat cancer again.

Stay strong Talia!

Farewell for now June 18, 2010

Posted by Amanda Kern in Uncategorized.
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“What seems to us as bitter trials are often blessings in disguise” – Oscar Wilde

It seems like ages since I last updated Talia’s blog. With as busy and as hectic as the last year has been for me I have felt fortunate knowing that Talia has been blessed not to have many trials since being in remission. So thankfully I can share with you all that she is in good health. I was so touched earlier this month when Desiree had emailed me the highlights from the central Florida Blood bank’s luncheon where they took the time to thank all the donors who helped Talia back when she was in need of blood & platelet donations. Watching it is a touching reflection of just how far this little girl has come.

Tonight I visited Talia for the first time since last July after receiving an email from Desiree titled “Talia’s leaving”. I think we’re all a little shocked to hear the news that Talia will be moving to live with her father in New York for a year. Others have emailed me as well pleading for me to help Talia somehow. Apparently this little web site I put together to share Talia’s story has moved many and though I really don’t think it’s the best time or place to express the discontent with the decision that’s been made for Talia to move to New York, it is pretty important for me to share with you all the one thing I have come to know best and see first hand…and that is the love and support so many have for this amazing little girl. So though there’s not much I can really do to “help”…I can share with you all a few moments from tonight that will help you remain reminded of the love that has surrounded Talia.

Talia spent  her last full day in Florida spending time at the beach with friends and family. Though she seemed excited with the idea of me visiting to take photos, I must admit it took a couple hours before she opened up to me but I don’t blame her — in just a day she’ll be moving away.  Finally her and her puppy Bella came to see me to have their photo taken.

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It was touching to see Talia and Desiree together. I don’t think any words could express the emotions Desiree must be feeling knowing her little girl, the same one she has stood beside these last few years as she’s fought cancer is now leaving.

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And a photo of sisters…Mattia and Talia.

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I know this custody decision will challenge both Desiree and Talia but as I looked into the face of this resilient little girl I see that the same strength that helped see her through battling cancer will also help her through any other challenges life may send her way.

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Talia, you’ve inspired so many of us with your strength. I’ve had many people tell me just this past year as I’ve faced my own challenges in life the famous quote by Mother Teresa, “I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” It’s tough to find the reasoning behind a lot of things that happen in life, but I have faith that there are some pretty awesome angels up above keeping a close eye on you helping you through all these challenges life is throwing your way. In knowing you just under two years I am so amazed to see how much you’ve grown and bounced back from your fight with cancer. Yes Talia, you have inspired us all.

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Talia…farewell for now…we’ll see you again soon.

I’ve posted a few more photos in Talia’s flickr if you care to see more highlights from tonight’s visit.

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!

Dancing & Singing Videos June 30, 2009

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Last week when I visited with Talia, Desiree shared with me the video from her dance recital that she performed in a little over a month ago. Thanks to her step father, Larry, we have this awesome video of her dance recital performance to share. Talia and her friends were pretty impressive in their dance where they performed to Janet Jackson and the Black Eyed Peas. You’ll notice that Talia stepped up to lead the dance a few times, and I’m confident you all will be stunned by her amazing dance moves in the last minute of this video.

Last week when I visited Desiree took a few videos of the girls that I thought you all might enjoy.

And if you’ve never been tortured by the presence of my camera, I’m sure you will see how Talia and my own children likely feel a little tortured at times by my paparazzi ways – though I must admit that I think the girls really enjoyed the attention of having their photos taken last week.

I spoke with Desiree this evening and she mentioned Talia would be returning to Arnold Palmer for the entire week of July 6th and that she’d begin chemo treatments again. We’ll just have to remain hopeful that she continues to fight this cancer – I think we all agree we enjoy seeing all these happy memorable moments much more!

Catching up June 24, 2009

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I suppose the fact that it’s been over two months since I last saw Talia is a good sign. Of course busy times in life have made it tough for me to visit Talia lately. I’ve remained in touch with Talia’s mother Desiree and have been reassured to hear she’s doing quite well. Tonight I was glad to squeeze in some time tonight to visit with Talia. I admit I was anxious to finally catch up with Desiree and Talia – our visit with one another has been way over due. When I arrived at Talia’s home I was thrilled to see Talia having so much fun with two of her friends as they sang and danced to Hannah Montana.

playing her guitar

dancing

rockin' out to Hannah Montana

Talia's friends

rockin' out

I made sure that Talia’s sister, Matia, didn’t escape without allowing me to take a photo with her in it too.

Matia & Talia

Talia also shared with me yesterday’s newspaper where she was featured on the front page of the local section of the Orlando Sentinel. Talia and her sister Matia were featured in the article written about Arnold Palmer’s expansion of its cancer center. (The article is also available online to read.)

she made the Orlando Sentinel

I’m glad to see Talia remains energetic around my camera, she certainly isn’t camera shy. I think my camera was pointed at her half the time during my visit with her and she made sure to pose for me several times.

strike the pose!

One of the things I enjoyed most about my visit was seeing the happiness that comes with the great friendships surrounding Talia. The girls were cute as could be. Her friends seemed to enjoy having their pictures taken just as much as Talia. I was relieved they all enjoyed being followed around by me as I photographed some fun moments with the girls.

friends

hearts

Talia & friends

Seeing all the happiness earlier this evening certainly made me think that this amazing child must be surrounded by angels to beat the odds with cancer. Since meeting her last fall she’s made a significant recovery. In fact, Desiree told me this evening that the latest tests indicate that she’s cancer free. Of course there are still chances that her cancer could return like it did last year – but for now all we can do is just pray that the worst is over. During my visit Talia shared with me her collection of angels. Last year when she was sick she decided to begin collecting angels. She showed me several shelves in her room filled with angels – every angel special to her. She showed me her favorite angel, also her first angel, that she was given to her by her mother.

Talia's 1st angel

She numbered rocks that were placed beside each angel she had and even gave each angel a name. She showed me the angel I had given her last fall on the first day I met her. Talia asked me to guess what she named her. I asked, “What???”. She tells me to look down to the left. As I did I saw my daughter, Hope, standing beside me. All I could do was smile as she told me she named the angel Hope.

Hope angel

It was nice to also finally meet Talia’s puppy Bella. This squirmy little pup was a challenge to photograph but as you can see in the photos – she’s just as precious as Talia.

Talia & Bella

Talia & Bella

Talia & Bella

Bella

Bella

It was very promising to see Talia in such great spirits this evening. I’ll keep my fingers crossed that Talia remains just as energetic and resilient as she was this evening.

Talia’s the spokes model for the Central Florida Blood Center May 15, 2009

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You can be Talia's hero

I’m happy to share with you all that Talia was recently asked to be the spokes model for the Central Florida Blood Center. You’ll likely begin seeing Talia’s face with advertisements for the Central Florida Blood Centers in an effort to increase awareness about the high need for blood donations. Talia’s battle with cancer is a great example of the strong need for blood and platelet donations. I thought I’d share with you all this first release from the Central Florida Blood Center.

LOCAL HEROES. SAVING LIVES.

Talia Castellano may be nine years old and 80 pounds, but she commands attention. The face of the little girl with very short hair lights up when she talks about her new puppy. She loves hanging out with friends and texting her network of supporters. Unfortunately, Talia also spends a good part of her time receiving platelets transfusions fighting a childhood cancer called neuroblastoma.

Heroic blood donors like you supply those platelets to Talia. Within two to three days of donation, platelets are transfused into cancer patients. Lives are saved everyday thanks to donors who give without knowing whose life they may be saving.

Talia’s story is just one of many. Everyday in our community, businesses, companies and organizations conduct blood drives, which provide lifesaving products to people like Talia. These blood drives are critical to the health and welfare of our community and are essential in saving the lives of patients in need. Come out to your company drive and be a hero to someone in your community.

Relaying for Talia April 21, 2009

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This past Friday I participated in Relay for Life at Timber Creek High School in support of Talia and others whose lives have been affected by cancer. The night was filled with many reflections as I stayed up through the night walking about 15 miles in support of those like Talia who have battled cancer. I admit that it’s been very reassuring to see Talia rebounding and recovering from cancer, however, I certainly can’t forget the struggles I’ve seen and heard she’s endured just in the short time I’ve known her. Over the last few months I have come to admire her spirit and resilience in spite of the challenges she’s faced during her battle with cancer. Attending Relay for Life has helped me remain reassured that there is hope that Talia will beat her fight with neuroblastoma.

Relay for Life

Stay strong Talia!

You can read more about my relay experience on my blog.

Talia’s New Puppy April 21, 2009

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I received word last week that Talia has a new puppy! I haven’t had an opportunity to meet with her since the Celebrity Stroll but Desiree managed to send me a few photos for me to share with everyone.

Desiree shared with me a bit about the newest member of their family. Talia’s new puppy, Bella, is a toy poodle about four months old. Bella was donated to Talia by the Puppy Stop in Orlando, Florida. Desiree mentioned that over the last several months she and Talia would stop at the Puppy Stop on the way home from Talia’s cancer treatments. Like most kids, seeing puppies certainly helped raise Talia’s spirits. After recognizing Talia’s fight with cancer, the Puppy Stop’s owner, Charles, recently offered Talia the puppy. As you can see, Talia is in love with her new puppy Bella.

Talia's new puppy

Talia's new puppy

Talia's new puppy

Thanks to Desiree for sharing these cute photos. My fingers are crossed that Bella helps keep Talia’s spirits lifted as she is suppose to be beginning chemo again this week.

Celebrity Stroll 2009 April 20, 2009

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On April 5th I had the opportunity to spend some time with Talia at Florida Hospital annual Celebrity Stroll fundraising event that benefits cancer programs at Florida Hospital. Talia has participated in this event in the past and again this year she was given the opportunity to walk along side other cancer survivors and celebrities on the runway in the Celebrity Stroll’s annual fashion show. I had the pleasure of capturing quite a few amazing moments with Talia during the Celebrity Stroll.

Talia

Behind stage after Talia had gotten ready she chatted with another cancer survivor. They discussed their battle wounds cancer has left behind, here Talia points out her access line.

During the fashion show Talia walked beside LPGA golfer, Annika Sorenstam.

Talia with Annika Sorenstam

Talia with Annika Sorenstam

We took quite a few shots after the show, including Talia’s family and friends.

We were all humored by Talia’s enthusiasm and enjoyed watching her as she walked the runway many more times after Celebrity Stroll had ended. We all agreed she has an amazing stage presence.

Talia

Talia spoke with many after the Celebrity Stroll, including WFTV’s Barbara West.

Talia & Desiree chat with Barbara West

She also had the chance to meet Jayde from XL106.7 again.

Matia, Talia & Jayde

The Celebrity Stroll proved to be a very memorable night for Talia. I admit that it’s always reassuring getting to see Talia in such great spirits. My fingers are crossed that her health continues to show positive signs of recovery.

You can view many more photos from the Celebrity Stroll event in flickr.

Talia’s La Vie photoshoot April 15, 2009

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A little over a week ago I had the opportunity to meet with Talia for a photoshoot that Encore Productions was having with Talia and a few others. Talia was asked to model for photos to be used for the non-profit organization, My Harmony, which supports children as Talia who are struggling with childhood cancer. My Harmony will be holding an event this coming fall called La Vie where children such as Talia will be given an opportunity to perform and live out some of their childhood dreams.

I thought I’d share a few photos from my visit with Talia. The first is in the midst of her getting ready – she made sure to smile every time she noticed my camera pointed toward her.

during a break

And I must admit I was humored by the fact that Talia insisted on putting on a lot of her own makeup. Ironically Talia’s mother, Desiree use to work as a make up artist, however, Talia was very reluctant to allow her mother help her much with her make up.

makeup

Though I’ve been photographing Talia since this past October, this was the first time I’ve been with Talia where another photographer was present. Encore production had a dedicated photographer committed to capturing specific promotional shots. and they definitely enjoyed Talia’s stage presence. I found myself taking several shots of their interaction with her, rather than photographing her directly at first so that I wouldn’t cause any confusion for Talia as to what camera she should be looking at.

planning poses

I did manage to take a few shots of her posing as I stood at different angles from the other photographer. As you can see, Talia did a remarkable job modeling for photos.

Talia

Talia

Of course, I enjoy capturing the true moments with Talia, which include the silly moments.

Talia's silly face

Talia had Jordan Koo and Quynn Gillan join her later in the photoshoot for more promotional shots.

Talia & Quynn

The girls clearly enjoyed themselves as we took photos.

Talia and Quynn showing off

The founders of My harmony (Laura Sutphin, Jennifer Gillan, Jayme Koo, Marian Gillan) joined in one last shot with Talia and the girls.

My harmony

Once I learn more details about My Harmony and La Vie I’ll be sure to share them with you all. After seeing Talia during this photoshoot I’m convinced that she not only would enjoy performing but she’s clearly an adorable girl with not only an amazing spirit but with big dreams.

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