JULIANA’S JOURNEY 2nd ANNUAL TOY DRIVE

MORE ON JULIANA PENA, our little PRINCESS WARRIOR from their website:

Our lives changed the day Juliana was born. I honestly didn’t expect motherhood to set in instantaneously, but you always hear that “it’ll come to you”. Well, it does. The day you give birth to a daughter as beautiful as she was – she still is – gives you a feeling of absolute love, adoration, and fulfillment. It’s a feeling that I’d never felt before she came into my life. True happiness – that’s what this feels like.

Juliana was a PERFECT baby – I mean that in every sense of the word. Never got sick, never had a fever, even when she was teething, she didn’t even cry. She smiled all the time and her laugh; let me tell you – the cutest and most contagious sound you’ve ever heard. She was always on the small side – maintaining at the 10-15th percentile for growth, but her pediatrician contributed it to Jesus’ and my “small frame”. Okay then – she’s going to be short, just like her dad and I.

She had this unique crawl though – Jesus said it looked like a baby monkey – and everyone thought it was so cute, even her pediatrician. We asked her doctors at every well-baby check-up if this was normal, and we were told that nowadays kids don’t start walking until as late as 16-18 months. But when she wasn’t walking by 18 months, we were referred to a neurologist and physical therapist in January 2011. When Juliana met with both sets of doctors, they could tell instantly that this wasn’t neurological – I mean, the girl was already speaking in full sentences already. So life moved on.

Late March of 2011, Juliana changed. She already started walking late (at about 19 months) and she now refused to walk, always wanted to lay down, didn’t want to eat, and just wanted to drink juice. We knew something was wrong when she started losing weight. I demanded that her pediatrician run a full physical on her immediately – her response was “there is no time for a full health check. We make appointments for problems like ear ache but they are not intended to be as long as full health checks or we could not see all our sick kids soon enough.” Well, that wasn’t the answer I wanted, so I demanded the full health assessment and got one. All kinds of tests were ran; blood, stool, urine. I was told that she had no “infections”, just too much fat in her stool and trace amounts of blood in her urine. She told me was going to contact Gastroenterology and then get back to me. I was asked to come back April 8th, 2011, for a weight check.

That’s when our whole world got flipped upside down.

There we anomalies in Juliana’s blood work. We were told to go to Kaiser SF to do an ultrasound since they have a PICU. That’s where they found “the mass” the size of a small volleyball. We were told two hours later that our daughter has CANCER. I still have a hard time saying that word.

After being taken by ambulance to Kaiser Oakland’s PICU, Juliana was immediately placed on 3 hypertension medications after a blood pressure reading of 202/170. We waited 3 days to get a biopsy and on April 11th, we learned that our 23-month old daughter, Juliana, had stage 3 Neuroblastoma Cancer, high-risk, poor histology, MYCN-gene amplified. Neuroblastoma is a rare form of pediatric cancer; only 650 cases are diagnosed in the US each year. We were handed a binder and were told to read about it – really?? Her first round of chemotherapy started in that same room three days later. She did SO great – she even started getting her appetite back!!

The next 10 months of Juliana’s life were intense, but you’d never know it. She was strong, perseverant, happy, demanding and relentless. Juliana battled every day, never looking back, with a smile on her face every step of the way, never complained, and always pushed forward. We basically lived at Kaiser since the treatment was so lengthy and intense and they needed to keep an eye on her. We stayed at USCF for 28 days in isolation just for her bone marrow transplant, but she actually kind of enjoyed it there.

In all, Juliana underwent 6 rounds of chemo, 2 surgically-implanted chest catheters, 2 abdominal surgeries, bone-marrow transplant, full upper teeth extraction, 20 rounds of radiation, 2 rounds of monoclonal antibody treatment, multiple feeding tube (NG and NJ) placements – and that’s only BEFORE she got sick in January and doesn’t include the other 150 days of injections, medications, pokes, scans, biopsies, sedations, etc., all with a SMILE. Juliana’s life on earth ended way too soon on February 24, 2012 at 7:03am as she took her final breath in my arms. We told her that we loved her, that we were proud of her, and that we’ll never stop fighting for her. Juliana was ONLY 33 months and 3 days the day she passed away.

She STILL makes us very proud and we love our daughter more than ANYTHING. She is the strongest person I know. I learned so much from my daughter in such a short time, and I’m angry that this happened to her and that she didn’t even make it through her treatment, get her Make-A-Wish (meet LMFAO and do the “Party Rock” dance with them), or just BE A KID. She never had the opportunity to do what “normal kids” do – then again, she wasn’t a “normal kid”. She was on the path of pure genius and we were told on dozens of occasions that she was an “old soul”, that she was just “too smart” and so well behaved. I’ll never understand or forgive the powers that be for doing this to her – for doing this to us. The world was robbed, we were robbed, she was robbed. Although neuroblastoma ultimately took her life, she still defied so many odds and through her short but amazing life, she changed so many people’s lives – some she knew, but literally thousands of strangers’ lives as well. During Juliana’s memorial service, there were 21 people who came up to the podium to share stories about her or how she touched their lives, and there were over 500 people in attendance. Juliana has been on TV three times and made the front page cover story on 14 Bay Area newspapers, even trumping Steve Jobs’ resignation from Apple. All at the age of 2 1/2!!

We will be posting information about fundraisers and other forms of support to help us raise awareness, funding for Neuroblastoma research and provide resources for the families afflicted by this dreadful disease. We intend to become one of the frontrunners in raising awareness about Neuroblastoma. Thank you to everyone who have been there for us throughout these past years. There are many people out there that were a big help to us during Juliana’s battle and will continue to support us as Juliana’s Journey Foundation takes off! We are a resource for information, funding for research and assistance for families afflicted by this demonic disease. We wish we could bring Juliana back, but all we can do is keep our promise to her that her fight will NEVER end!

We love you Cita!! You’re all we ever wanted and you’ll live forever!! Juliana’s Journey Foundation

P.O. Box 246 – South San Francisco, CA 94083-0246
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