Starlight Families Share
Jessica's Story - Updated
2010 - My Recovery From Hospice With The Love Of My Mom & Starlight Family
By Jessica Hinojosa Starlight Colorado Child Ambassador
I continue to suffer from Hydrocephalus and have had many brain surgeries. My illness has left me with severe pain and constant fear, and PTSD. I am also now legally blind because of the surgeries. I had another surgery of many in March 2008. My VP Shunt was totally removed because a doctor decided I didn't need it anymore. This surgery left a deep hole on the left top of my head. A few days later, my mom took me to PSL emergency room.
We both were aware of my acute worsening of symptoms after shunt removal with increasing hydrocephalus. I needed urgent neurosurgical intervention and admission for work up and stabilization.
The attending Neurosurgeon did my first surgery when I was three months old I hadn't had him sense, so I think that has been good luck. A nice doctor operated another day, and closed my hole that was on the left top of my head.
I couldn't imagine how I would recover as good as I did without the medical staff of PSL, my mom, home care, hospice, and Starlight.
In May 2008 I was released from the hospital, with Home Care. They gave me my IV medications. Hospice staff managed my incoming pain, the case manager came weekly, the art therapist came once a week, she showed me how to express my pain and feelings threw art. She always listened and consulted with me after every drawing.
Starlight called and checked on me, they also invited me to all the events. This is the best escape I had. This last surgery left me so weak and helpless, I knew Starlight never cares what I look Like as long as I can be at their events and happy. No one loves Starlight more than I do but maybe close. Smiles!
My favorite thing about starlight is reading and sharing e-mails, phone calls and spending time together and the Starlight Parties.
I love you So Much Starlight Colorado
Thank you so much for all you do for all us kids here at Starlight.
2008 - Starlight Colorado Child Ambassador Jessica has experienced more in her young life than most of us can begin to comprehend. Jessica suffers from Hydrocephalus, a painful condition that causes swelling and pressure inside the skull. Jessica’s condition has left her with severe, ongoing pain, visual impairments and she now suffers increasingly from periodic blackouts when the pain becomes too unbearable. She had her first brain surgery when she was just three months old, and has since had countless procedures and hospital stays.
Spending so much of her life in and out of the hospital has taken a toll on Jessica’s family, and not surprisingly, has kept her from feeling like a normal child. Jessica says that it was particularly difficult to make friends at school, since many kids her age didn’t understand how to react to her illness. She instead turned to her mother, who she says is her best friend and has stuck by her through all her ups and downs. “My mom tends to my illness with patience and love,” she says. “She has fought long and hard to have my medical needs met. She is my eyes, my hope and is always devoted to making our lives happy and safe.”
Another factor that has helped Jessica to cope with her illness has been her involvement with the Starlight Children’s Foundation. She was first introduced to Starlight in 2004 by a Child Life Specialist, who encouraged Jessica to attend a Starlight Great Escape at a nearby hair salon. “Starlight made it possible for all the kids who were interested to get a haircut of their choice,” remembers Jessica. “I was so happy, because the lady that gave me my cut showed me how to style my hair so that no one could see the shunt on top of my head or my scars. Starlight helped me to forget about my pain for a little while and be happy.”
This initial experience led Jessica to become increasingly involved in Starlight. She has since attended numerous Great Escapes and Hospital Happenings and cites these programs as an important source of strength and happiness. “Through Starlight, I have gained many friends that understand what I am going through. Starlight is like my extended family, because no matter how sick I get, a Starlight staff member always comes to visit me at the hospital, and that is very special to me. Starlight has helped me to accept myself no matter what I already have or what could go wrong in the future, and that is priceless.”
Jessica’s dedication to Starlight was so evident, that in December 2007 she was named as a Starlight Child Ambassador. “What is cool about it,” she says, “is that it has raised my self-esteem. I have more self-confidence and am able to do things that I could never do before, such as speaking about myself and my illness. Starlight has helped me forget about all the medical things that I go through, and even if it is just for a few hours at a time, I am able to forget that I am different.”
Calysta Corbett was diagnosed with Acute Lymphocyte Leukemia on June, 10th 2008 at the age of 3 years old. That day is truly a day we will never forget. We were very lucky to have such a great pediatrician and that Calysta was always very healthy and never showed any signs of any illness, except she was having bloody noses often. Most doctors would just assume the high altitude in Colorado and very low humidity would account for the bloody noses. But not her pediatrician. He ran some blood testes and immediately referred us to our other angels. She was then given some tests (blood test, bone marrow test and spinal tap) to confirm that she had leukemia.
Now a year and a half later our little angel has been through more than I can tell anyone. But thanks to all our medical angels, Calysta went into remission after the first month of treatment. She will finish her last treatments in August of 2010. We all look forward to that month as much as the month she was born!
Calysta and her parents, Justin and Janelle were introduced to Starlight Children's Foundation by our make-a -wish coordinator in February of 2009. It was a blessing, our first outing with starlight was a DU gymnastics meet and Calysta loved it and danced almost the whole time. For us it was amazing to see her dancing and soooo happy, because in the first months of Calysta's treatment she stopped walking from the steroids and chemo making her legs very weak. Seeing her being a kid again and dancing was one of the best moments of our lives! Thanks to Starlight we have been able to attend many activities that make her able to be a kid again and have tons of fun. She loves getting mail from Starlight and can't wait for the next Great Escape event. As do her Parents. Calysta is really excited to attend the next outing at the Denver Zoo. She loves animals and asks everyday if it is time yet to go see the animals with Starlight! Thank you very much Starlight and all their sponsors for helping children and their families have so many fantastic fun times!!!!!
Justin Miller was your typical three year old boy with two older sisters and loving parents enjoying life in Colorado. However, his life, and that of his family, drastically changed upon a diagnosis that year of Neuroblastoma, a cancerous tumor in the nerve tissue. As one can imagine, this was a shock to the family and where days used to be spent goofing around and playing, Justin suddenly was forced to undergo several rounds of chemotherapy, a stem cell transplant, radiation therapy and undergo an antibody study. He was just three years old. Luckily for the Miller family, after all of these treatments, Justin finally became cancer-free and life seemed to want to go back to normal. Sadly though, the luck did not last and Justin relapsed just 15 months later when cancer was now found in his brain.
This family is doing everything it can to experience life to the fullest, to enjoy each other and create memories with one another because you just never know what the future will bring. And while the family may appear to be just like the other neighbors on the block, they are far from it. This family attends school and social functions, but then endures tedious and regular trips to New York City – the only location where Justin can currently receive some of his treatments.
Recently, Justin has experienced resistance to his drug therapies and is therefore receiving chemotherapy at home, induced by his mother EVERY DAY AFTER SCHOOL! Yes, Justin is attending first grade and while so many other children have time to do what they please when school lets out, the Miller family spends some of their time ensuring that Justin will just be able to enjoy another day.
“He is a HUGE sports fan,” says his mom, Lori Miller. “And thanks to Starlight, we, as a family, have been provided some PHENOMENAL opportunities.” Her voice lights up as she describes all of the amazing Great Escapes experiences she has been able to participate in with Justin and her two daughters and husband through Starlight. In addition to loving all of the “back to school” activities, Lori stated that Justin particularly enjoys the DU Hockey games where he gets to meet with them and play. “Most kids don’t get to do these types of things,” she said. “We are just so grateful!” Justin also loves the Christmas parties and his sister Kelly has mentioned a time or two (wink) that she loves breakfast at Snooze and the Disney on Ice events.
“There are just so many things that Starlight does to strengthen the relationships within our family,” said Lori. “Laurel and Lois have been so helpful and we just love the entire staff.” While Justin may not be playing sports for too many more years due to the intensity of higher-aged sports and the potential threat to his vision (he has site in just one eye) and his kidney (he only has one), he is still interested in everything sports! His mom said that if he were to pick a Great Escapes event just for him, it would be geared around football. She said, “asking for the Broncos would probably be too much, but he’d be just as overjoyed with CSU and anything football!”
So while many families are debating the small, unimportant details of day-to-day homelife, the Miller family is reaching and stretching themselves beyond comprehension to “hold it together” and experience all that is TRULY important in day-to-day homelife…just being with family. And a final thought from Justin’s mom Lori, “…so many wonderful thanks to the people of Starlight Foundation because without them, I’m not sure what we would do."
There are some stories that even by Starlight standards are so overwhelming that they are incredulous. Starlight mom Misty tells one of those stories. Her eldest, Darryl, was born premature at 3 lbs, 3 oz with a cleft palette that prevented him from nursing. Misty named Darryl after her father when Darryl took a turn for the better when Grandpa said, “If you don’t get better you can’t go fishing with your grandpa,” Her second child, Destiny, was also born with a cleft palette and at that time doctors determined it was because Misty’s father was exposed to Agent Orange during the Vietnam War.
Destiny doesn’t have enough tissue to close her cleft, has a speech impediment and suffers from other kids calling her “monkey.” Her third child, Christopher, was born healthy but because of his siblings he has been known to tell a tall tale or two about his “ailments.” The fourth child, Trinity, was born prematurely with a cleft palette. The first two years of her life Trinity were touch and go. When the parents were able to bring her home, she had to stay in her room hooked up to machines. She had seizures, shunts, oxygen, and was even diagnosed brain dead at one time. Trinity has Unknown Syndrome because doctors don’t know how to identify all of her symptoms.
When asked about her world, Trinity just points at different parts of her body. “In my world there is a feeding tube, a traech, a pace maker and shunts.” Early 2007 was the pinnacle of difficulties: Misty was told that Trinity wouldn’t survive; her husband, a soldier in Iraq, hit a roadside bomb and although he survived, shrapnel ripped through his body, he currently has no short-term memory and suffers from severe PTSD; and Misty, pregnant with her fifth child, delivered Samantha extremely prematurely at 1 lb, 1 oz. who also has a cleft palette and asymmetrical facial features. The reality of life for the Sabos is that they return frequently to the hospital with Trinity. Misty genuinely notes that, “I appreciate that my children have taught me so much about life.”
Tate, now 11, was born seven weeks premature after suffering a stroke in utero and at 5 weeks developed a respiratory virus that put him on a ventilator. At age 3, he was diagnosed with hydrocephalus, a condition where the body produces too much spinal fluid, and had the first of 11 neurosurgeries. He been dealing with chronic illnesses ranging from asthma to heart defects since the day he was born.
The oldest of four, Tate’s brothers Van (10) and Trace (7) and sister Calie (4) have grown up dealing with his illness.
“The kids understand that there are some things we just can’t do as a family because of Tate’s condition,” says mom Andi.
The family was first introduced to Starlight by a high school student who was participating in a school fundraiser to raise money to help pay for one of Tate’s procedures.
“Our kids love Starlight, especially the Great Escapes activities,” says Andi. “Great Escapes have let us do so many things as a family that we wouldn’t otherwise have been able to afford, or just wouldn’t have made a priority with all of our energy focused on Tate’s care. We’ve been to Disney on Ice, Rockies and Avalanche games, ice skating with the Denver University hockey team, a stargazing night and so much more.
We all look forward to the events. The kids talk about them for a few days beforehand and really get excited about seeing Starry. What makes it even more special is that they know that Tate is the reason they get to go.”
For Andi and her husband Scott, Great Escapes also provide an opportunity to connect with other parents in similar situations.
“It’s been really helpful to meet other parents and talk about the challenges of having a special needs child,” she explains. “Scott spoke with one couple who had some good information about treatments for Tate, and we are always grateful to have the moral support of other families who are dealing with the long haul of it.”
For Sarah and Matt, it has been an incredibly stressful few years. In 2004 their son Ben was diagnosed with neuroblastoma, a cancer of the nervous system, and since that time life has centered around Ben’s care.
“I am so grateful that we were introduced to Starlight when we moved to Denver a year ago,” says Sarah. “Great Escapes give everyone in our family something to look forward too, and have helped us get back a sense of normalcy. We’ve enjoyed so many family activities through the program — Disney on Ice, hockey games, a Hi-5 performance and painting at Color Me Mine, just to name a few.”
Spend some time with families like Sarah and Matt’s and you’ll quickly learn that, when a child or teenager has a serious medical condition, everyone in the family is affected.
“My daughter Madeline was born only six weeks after Ben’s original diagnosis, so she basically spent the first year of her life in the hospital. It wasn’t just Ben going through treatment — we were all living out of his hospital room,” recalls Sarah.
“The special thing about Great Escapes is that Starlight includes Madeline too. She loved Disney on Ice! Great Escapes give us all a chance to enjoy time together — outside the treatment room.
“We wouldn’t have the chance to do things like this otherwise,” she adds. “Our lives completely changed financially when our son was diagnosed. I stopped working to take care of him. And his medical bills have topped $2 million. We are getting by, but the extra things like family outings would otherwise be something we would no longer be able to enjoy.
“Starlight really has made a difference for everyone in our family.”