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Talia meets Dr. G March 16, 2009

Posted by Amanda Kern in Uncategorized.
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Late last week I had the opportunity to visit Talia for the first time since January. Talia has recently underwent some low dose chemo and though she wasn’t feeling the best the weekend before I met with her I must admit that she seemed to be in great spirits when I saw her last week. Because I hadn’t seen her in a while I must admit I was in awe to see how much of her beautiful hair has grown back. Here’s one of the first photos I took of her last week:

smiles

I first met with Talia at the clinic where she underwent more bloodwork for tests.

Giving blood for tests

The primary reason I took a trip to meet with Talia last Thursday was to be present during her big trip to see Dr. G, the chief medical examiner of Orange County. Yes, the same Dr. G on the discovery channel! I must admit that with my busy schedule I don’t get many opportunities to watch much TV so I wasn’t as familiar with who Dr. G was. However, Talia knew her quite well from watching her television show. One of the nurses at the clinic managed to arrange a meeting so Talia could meet her in person.

I have to admit that Talia isn’t very shy around my camera now I admired how fearful she looked in this photo as we waited for Dr. G., though Talia really was quite excited.

She looks scared to see Dr. G!

During our visit we got to meet with Dr. G in her office. She gave Talia a mug and a picture she autographed as we all chatted with her about a variety of topics.

Talia proudly shows her Dr. G mug

Dr. G

Talia shares her Dr. G picture

During our visit Desiree and Talia chatted with Dr. G a bit about Talia’s history.They made sure to tell Dr. G how it’s been just over two years since Talia was first diagnosed with neuroblastoma. Dr. G seemed pretty impressed with Talia’s spirit, despite her tough battle with cancer.

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Dr. G openly answered many questions for Talia. The conversed about quite a few of the episodes of Dr G medical examiner that Talia has seen on the Discovery channel. Talia seemed most excited to chat with Dr. G about the “chompers” she’s seen used in the show.

talking about the "chompers"

Afterwards Dr. G took us downstairs to where parts of the show are filmed – the morgue. Talia was very excited. She quickly put on rubber gloves so she could hold the “chompers” she’s seen used in the show.

putting gloves on

Matia, Dr. G & Talia

Matia, Dr. G & Talia

Dr. G, Amanda & Talia

I must admit that the experience was fun and I have to extend a huge thanks to Dr. G for taking time out of her extremely busy schedule to meet with Talia. I’ve heard nothing but great things from many others in regards to Dr. G’s ability to reach out to help those she can around her challenging schedule.

Once we returned from our visit we went back to the clinic and met with some of the staff who see Talia fairly regularly. They all seemed very excited to hear abut Talia’s visit.

Talia tells the staff at the clinic about her trip to see Dr. G

At the end of our visit Talia, Desiree and Matia let me take one last photo, here it is:
Desiree, Matia & Desiree

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Amazing spirits January 8, 2009

Posted by Amanda Kern in Uncategorized.
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For the first time in close to two months I got the opportunity to meet with Talia and her mother, Desiree. Just before Thanksgiving she had taken a trip to New York where she underwent more tests and treatments, including chemo, as well as visiting family. She was pretty sick for a while and has recently started to make another turn around. This morning I got the opportunity to visit her at the clinic where she routinely undergoes tests to check on various levels in her body, such as her level of platelets. Instantly when I arrived in the room I was greeted by Talia’s amazing spirit, and her wonderful smile – something I was glad to see so much of this morning.

posing for the camera

As they waited for test results to return it was nice to catch up with Desiree and Talia. She’s gained 3 pounds – which is a great sign! Her hair is also starting to grow back. While I was there she showed me her access line, which makes it easier for her to receive medication or treatments.

Talia's access line

I imagine one of the challenges of having so many treatments and appointments such as the one at the clinic today is playing the waiting game. As they waited about an hour for lab results, Talia brought out countless bottles of nail polish and set up her own little nail salon. She offered to paint any one’s nails who wanted to take a moment with her.

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One of the things that moved me today was seeing how amazingly awesome the staff was at the clinic. Several nurses, nurse practioners, and even a volunteer stopped by to spend some time with Talia. The spirit of those who are surrounded by many children who are also battling cancer was certainly touching to see. I can only imagine how it must wear on the emotions to see so many young children suffering, so to see how they were able to make Talia feel special today certainly was a moment which touched me personally. In the case of Jenny, she’s a volunteer who has been volunteering with the clinic for over 19 years (since 1989!) – she was the first to step into Talia’s make shift clinic nail shop. It didn’t take long before others were in line to have their nails painted.

nails

painting nails

THE MOMENTS THE CAMERA NEVER CAPTURED
I was also moved by moments I never captured on camera. In the best interest of the privacy of other patients I chose to just save these moments in my mind. It was so reassuring to see Talia in such great spirits today. She happened to be one of many children at the clinic this morning – all of which are battling various forms of cancer. It broke my heart to see so many of them challenged, just as Talia is. But I was amazed to see how resilient the spirit of each child was. Although I’ve already determined that Talia is a special individual, seeing her today reminded me of what an amazing spirit she has. Though she’s fighting her own battles, she took time today to spend with another patient to paint her nails. It was a great moment seeing how she was able to make this little girl’s day. She even loaned some nail polish to a mother of another little girl who was in quarantine due to her own illness.

Another smile

REMOVING THE LINE
Talia found out today that many of her counts were on the rise, which is an excellent sign. It means that soon she’ll be able to have another round of chemo, which she needs to fight the cancer. It also means that she will likely get to return to school next week, something I’m sure she’s looking forward to. Though her platelets have dropped since the last test earlier this week, they are hopeful they’ll rise by early next week in order for her to start her next round of chemo. So she’ll get a bit of a break from any treatments for a little longer. Because of this they removed the access line, which can only be in place for seven days. Though I’m sure the line was a little uncomfortable, I have this feeling that removing the tape was more discomforting.

Removing the access line & tape

Removing the access line & tape

As we left the clinic I asked if I could take a few photos of Desiree and Talia.

Desiree & Talia

After taking the first photo, Talia asked me if I wanted her to take her hat off. I told her it was up to her. Today she was willing to show off her adorable head which is finally starting to grow hair again.

Desiree & Talia

Of course I also had to capture a few more shots outside which reflected her amazing spirit today.

Talia

Talia, in great spirits

Before we finally left, I asked for one last photo of her & I to include in my 365 photo challenge.

Amanda & Talia

I hope to be in touch with Talia & Desiree next week, which is when she’ll likely begin chemo again. My fingers are crossed for you Talia! Stay strong – and NEVER lose that amazing spirit!

Helping others November 14, 2008

Posted by Amanda Kern in Uncategorized.
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The blood drive for Talia today was a huge success. It seems as though Talia has managed to make an appearance on another three radio stations this morning to help spread the word about the blood drive. This morning I couldn’t help but smile hearing her adorable little voice as she spoke with the guys on 104.1. Her story moved the dj’s and listeners to go out and donate today or in the upcoming week. Talia spoke along side Desire, and Pat Michael’s of Florida’s blood centers – which helped listeners understand the need for donations not just for Talia but for many others. Later in the afternoon I met up at the blood drive with Talia’s family and Pat Michaels at the blood drive.

Mattia, Desiree, Talia, & Pat

Talia spoke with quite a few people at the blood drive. One of the questions the radio dj’s confronted her with this morning was how others reacted to the fact that she’s lost her hair due to chemo. Though she feels as though most people stare at her because she has no hair, she’s found that wearing hats or wigs helps her feel more comfortable. Today she was wearing a super cool black hat at the blood drive, which she only removed this one time.

chatting at the blood drive

Talia was even able to speak with some of the donors while giving blood. She was happy to see how many people were helping out, and was thankful that today she was not the one getting poked.

Talking with those donating

I created business cards to help spread the word about Talia’s web site. During the blood drive Talia was able to give these cards out to donors and people she met.

Angels for Talia cards

giving out the cards

I was impressed with the success of today’s blood drive. It’s amazing how others have stepped up to reach out and help donating blood to help Talia and others in need. In the case of Stacey Dyess of High Tech Institute, she informed Talia that they had a photo of Talia hanging at their school encouraging students to come out to the blood drive to donate.

meeting Talia

I must admit that though I am so moved by how much Talia has gone through, I can’t help but admire the strength of her family. As Desiree mentioned on the radio this morning, cancer affects not just the cancer patient – but the entire family. Her mother, Desiree, has stopped working and has been by Talia’s side these last two years as she’s underwent numerous treatments. She’s endured far more stress than should be shared on this blog, but one thing’s certain – she loves Talia dearly. Capturing this moment of her on the phone definitely sums up just a small fraction of how busy she’s been between her many chats with radio stations, supporting the blood drive, and more.

Desiree on the phone

There’s also Talia’s sister, Mattia, who’s 15 years old. I imagine Talia’s health has been equally tough for Mattia, where so much attention these last two years has been placed on taking care of Talia.

Mattia

I admired seeing the bond between Mattia & Talia. Talia definitely looks up to her big sister!

Chatting with Mattia

Mattia & Talia

I must admit that I’m thrilled to see that Talia has warmed up to my camera since my first visit with her two weeks ago. She has the most awesome smile.

Talia

I admired how she spent time talking to my son today. Before leaving the blood drive today I took this last shot of her as she looked down on my son in his stroller.

Last photo of the day

I’d definitely say that today’s blood drive was a huge success, thanks to Talia, the huge heart of all the donors, and the wonderful staff at Florida’s blood centers. We are fortunate right now that though this blood drive was in support of Talia, she’s been improving so much that she’s not needed donations this last week. I’m not sure if Talia truly realizes it yet, although so many others are stepping up to help her – by her standing up sharing her story she’s also helping so many others who will likely need today’s donations. Stay strong Talia – and know that if the times comes that you need help you have so many others who will step up to help you!

Blood Drive for Talia (and others) November 12, 2008

Posted by Amanda Kern in Uncategorized.
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floridasbloodctrlogoThis Friday, Florida’s Blood Center will be holding a Blood Drive for Talia. I spoke with Desiree this evening, and Talia’s condition has improved. However, it’s still quite important to keep in mind how quickly her condition could change. Through Talia’s recent need for blood & platelet donations, her family has come to realize how important the need for donations are – such as those that have been provided to Talia. Desiree will be speaking on the radio again in the morning to speak with Doc & Grace from K92FM about the need for donations in the area. Because of Talia’s need for platelets and the huge heart of so many who donated, the blood bank’s supply was helped somewhat. However, I’ve come to learn that in Orlando there are constant demands for donations. So I encourage you all to try to make time to come out to the blood drive for Talia or take a trip to your local blood bank.

Here’s the release sent by Florida’s Blood center in regards to the blood drive for Talia:

Florida’s Blood Centers (FBC), the local blood bank, is asking for donations immediately to help 9-year-old Talia Castellano, who has been diagnosed with a rare form of cancer, neuroblastoma. A special blood drive for Talia will be held at the Orlando Fashion Square Mall Friday, November 14, 2008. Blood donations will help not only Talia’s need for platelet and O negative red blood cell transfusions, but will help our current low blood supply.

WHEN: Friday, November 14, 2008 11:00am-5:00pm

WHERE: Orlando Fashion Square Mall (Inside the West Court near Sears.)

WHO: We need any person who has ever considered giving blood to please contact Florida’s Blood Centers. Cancer patients are in daily need of treatment, burn victims use plasma, trauma victims need red blood transfusions, and routine surgeries depend on the gift of a volunteer donor.  Donors can be as young as 16 and should weigh at least 102 pounds. There is no upper age limit.

Florida’s Blood Center also shared some current facts about donations which may help making the decision to donate a little easier:

  • Florida’s Blood Centers currently needs all blood types, especially Type O Negative.
  • Florida’s Blood Centers currently has a 2-day supply of blood.
  • Every donation is separated into components in our region and will be transfused into a patient usually within 2 to 3 days.
  • Just one donation can save multiple lives, because it’s separated into components– Red Blood Cells, Plasma and Platelets, Clotting Factors and a host of pharmaceuticals.
  • Every three seconds someone is in need of a blood transfusion.
  • Platelet donations are also being encouraged.  Donors should ask about moving into this stage of donating in which platelet donations will impact patients within 5 days.

Now, though this blood drive Friday is certainly in support of Talia, it should be made very clear that donations will not be made just for Talia. In fact, it’s our hopes that her condition is improving enough that she may not need donations as often as she has had the last month. However, there are still so many others out there who could use your help. Hopefully you all are able to donate in the near future.

Download the Release by Florida’s blood center about the upcoming blood drive for Talia.

UPDATE: Desiree just shared the 60 second radio spot of her and Talia along with Pat from Florida’s blood center which will be playing on K92FM, I thought you all might want to take a listen.

Blood Drive for Talia K92fm radio spot

Life, Oh Life… November 6, 2008

Posted by Amanda Kern in Uncategorized.
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This past week since I last saw Talia has flown by. I’ve been in touch with Desiree a few times over the last week and I’m impressed with how Talia’s recovery has been going. Last week when I left Talia she seemed so tired and content with being left alone. I don’t blame her for not wanting to open up to a stranger. I had hopes that during my visit this evening that she’d feel a little more comfortable with my company. Luckily having my two kids with me this evening helped her open up a bit more. Over the course of the evening I got to watch the kids play nintendo ds, draw, and enjoy music together.

Before I left her last week, with it being so close to Halloween I asked her what her favorite candy was. Her response: blow pops. So I left the hospital last week promising her that the next time I saw her I’d bring her blow pops. So this evening when I had the opportunity to visit her again, she certainly welcomed the blow pops.

blow pop

Though losing her hair is a constant reminder of her cancer, I thought it was cute seeing Talia this evening sporting two cute bat tattoos on her beautiful bald head.

bat tattoo

Shortly after arriving Desiree brought us back to where Talia’s step father, Larry, was playing the drums. One of the things I learned last week was how much Talia loves music. She loves to sing. She enjoys dancing. Larry began to play the drums to the music while Desiree sang and danced, in hopes that Talia would join in. I admired the love I felt in the room for this beautiful little girl. Though she continues to deal with the day to day moments that come with cancer, she’s so loved by her family. There’s no doubt that they strive to remind her to enjoy all the little moments in life, like singing and dancing tonight.

trying to get Talia to sing

Talia sat on a couch in the room and just watched.

watching Mom sing & dance

It was so awesome to see such huge smiles on her face this evening.

I couldn’t help but smile seeing some of her expressions this evening, like the look on her face at times as she watched her mother sing & dance.

watching her Mom sing & dance

And I must apologize to Desiree, because I know she wasn’t too interested in having her photo taken this evening but these moments were too priceless not to capture. I truly adored watching how much she loves Talia – and how hard she tried to convince her to get up and sing and dance with her.

sorry Desiree...

It was only a matter of time until Talia opened up to singing. When the popular black eyed peas song, “Where is the love?” was played she began to sing along with most of the song.

singing

The last song of the night requested by Desiree was the song “Life” by Melissa Desiree. It’s a special song to both Desiree and Talia. Talia arose to sing and dance with Desiree.

singing Life

Desiree told me what a beautiful song this was, and how touching the lyrics were. After hearing the song I must agree. Desiree, you need not search for the lyrics any longer, I think it’s quite fitting to include them.

Ooh, Yeah
Oh yeah
Oh Life
Oh Life
I’m afraid of the dark
Especially when I’m in the park
When there’s no one else around
Oh I get the shivers
I don’t wanna see a ghost
It’s the sight that I fear most
I’d rather have a piece of toast
Watch the evening news
Life, oh life
Oh life, oh life
Life, oh life
Oh life, oh life
I’m a superstitious girl
I’m the worst in the world
Never walk under ladders
I keep a rabbits’ tail
I’ll take you up on a dare
Anytime, anywhere
Name the place, I’ll be there
Bungee jumping, I don’t care
Life, oh life
Oh life, oh life
Life, oh life
Oh life, oh life
Life
So after all’s said and done
I know I’m not the only one
Life indeed can be fun
If you really want to
Sometimes living out your dreams
Ain’t as easy as it seems
You wanna fly around the world
In a beautiful balloon
Life, oh life
Oh life, oh life
Life, oh life
Oh life, oh life
Life, oh life
Oh life, oh life
Life, oh life
Oh life, oh life
Oh life, oh life..

I truly admired watching the connection between Desiree and Talia this evening.

Desiree & Talia singing

Before the evening ended we took one last picture with the guinea pig she promised she’d show us before we left.

It was reassuring seeing Talia in better spirits this evening. Earlier this week she went in for tests which showed she’s gradually improving. Her platelets were at 66, which is a big improvement from last week. She’ll be returning to the clinic in the morning for more tests. Our fingers are crossed that she’ll continue to stay strong!

Home in time for Halloween November 1, 2008

Posted by Amanda Kern in Uncategorized.
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Though I have no photos to share this time, I did receive word this morning that Talia made it home last night from the hospital. Talia really enjoys halloween and wanted to be home in time to go out trick or treating. She told me that just like my own daughter, she too wanted to be a vampire this year. When I visited Thursday they weren’t so sure she’s be let out of the hospital before Halloween. It broke my heart to think that this little girl wouldn’t be able to enjoy one of the most exciting holidays of the year. So Desiree’s phone call this morning was quite reassuring, knowing the Talia made it home in time for Halloween. Though she arrived home pretty late, a few neighbors were there so she too could go trick or treating.

Desiree and Talia also spoke this morning on the Best Life Barb show on the radio and helped spread the word about Talia’s condition as well as the need for blood and platelet donations. We’re quite thankful that they agreed to help get the word out to help Talia, but through the process of trying to get donations for Talia we’ve learned that there’s a shortage of blood, especially for her blood type (O negative). We’ve come to learn that only 7% of the population is O negative. So if you have the opportunity to donate blood you might not just help Talia but you may help many others in the process as well.

I have no doubt that Talia and her family are glad to have her home after being in the hospital for over three weeks. Though Talia is home, she’s still recovering and they’ll continue to take things one day at a time – not knowing what each day holds. I look forward to spending some time with Talia soon – away from the hospital.

One strong girl October 31, 2008

Posted by Amanda Kern in Uncategorized.
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Strength. It’s what lives inside us all – and what gives us the power and the courage to fight some of life’s toughest moments. Strength is what keeps Talia Castellano hanging on as she battles the rare form of cancer, neuroblastoma.

Yesterday I had the opportunity to meet Talia Castellano for the first time and I’m convinced she’s one tough cookie. I first learned of Talia last week when I received an email from Christy Perry, someone I had worked closely with on several design projects a few years back. As a dear friend of Talia’s family, Christy sent out several emails requesting platelet donations to help Talia.

Just a couple days earlier, before I was even aware of Talia’s fight with cancer, I had come across a web site for Max Mikulak who also battled neuroblastoma. The web site created by photographer, Deb Schwedhelm, was a photo journal documenting her personal experiences with the Mikulak family during Max’s experiences with cancer. I was moved by the web site – so much so that once I received Christy’s email there was no hesitation in proposing the idea of helping Talia through my ability to help her and her family much like Deb helped little Max. My hopes are that in creating this blog and photographing some experiences with Talia that others will stay informed and also find reason to help Talia more. There’s so much more that can still be done – and this little girl needs all our help.

After speaking with Talia’s mother, Desiree, I was even more motivated to help her little girl. Talia was diagnosed with Neuroblastoma on February 14th, 2007 and recently had a relapse of her cancer. She’s been in the hospital for about three weeks after having her last round of chemotherapy. I got to meet Talia and Desiree for the first time yesterday. When I first arrived Talia was resting. Desiree spent the first few minutes discussing Talia. I learned she loves to dance and draw. She enjoys fashion too. I also learned about her current health. I don’t know much about neuroblastoma but in hearing some of the results of her tests I was quite shocked. Her platelets from her tests on Wednesday showed that she only had 14 platelets. Yes, 14. The normal range is 150,000 – 450,000.

You might be asking, “Why Angels for Talia?” – well, you see Talia has found that angels are something special to her. She’s begun collecting angels recently. Once Talia awoke I gave her a new angel to add to her collection. After hearing Desiree speak of all the medical procedures Talia has already underwent, I have no doubt that there must be many angels looking over Talia.

Angel for Talia

With it being so close to Halloween, Talia watched Hocus Pocus while I continued to talk with her mother.

watching Hocus Pocus

Talia

While I was there Desiree received a phone call from the central Florida Blood bank. Apparently because of Talia, there was a great response which helped with the blood shortage in the area. In order to donate platelets directly to Talia, the donation must meet special criteria which you’ll only know you meet if you give blood.

while Mommy is on the phone

I could tell that Talia wasn’t feeling the best. I asked her if she wanted me to take a photo of her with her Mom before I left or the next time I visited. She said next time – and so we called it a day. Just before we left the nurse came in quite excited to inform Desiree that more platelets were on their way.

Some good news
I was thrilled to receive a phone call from Desiree this evening informing me that they were in the process of leaving the hospital. My fingers are crossed that I’ll be visiting them soon away from the hospital – I know they’re anxious to be back in their own home.

Until we meet again Talia – stay strong.