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Meet Jillian – Neuroblastoma

Meet Jillian – Neuroblastoma

Since the day she was born, Jillian was never ordinary. Born a month early and by an emergency c-section (her acrobatics in utero caused two knots in her cord), she was still perfect. This strong willed baby had a feisty and outgoing personality from day one. She ate good, slept when she had to and loved playing with her big sister.
She turned 3 in April of 2013 and like a light switch, something changed. She started complaining that her tummy hurt. Her personality became withdrawn; she no longer wanted to play with her sister and became aggressive with our dogs. She would eat when forced and sometimes she would throw up. A trip to her doctor in June for a wellness exam showed no physical signs of a medical condition. All her “symptoms” were nothing more than the “Terrible Threes” or teeth coming in and possibly just changes as she grows, typical toddler issues. But something in the back of my mind knew there was more to this. Instinct told me that something was wrong.
By the end of our summer vacation in June, she was worse. By the Fourth of July (on a Thursday) she started with a low grade fever and vomiting every time she ate. The four day holiday weekend left us no choice other than an emergency room visit but I felt we would be turned away for a fever of only 99.6. That fever went up and down and lasted through the weekend and by Sunday she had quit eating and drinking all together. Monday morning, July 8th 2013 I took her in to see her doctor again. Her color was off, her breathing shallow and a hardness in her abdomen had her doctor concerned and we were told to go straight to the e.r. for abdominal X-rays.
She was taken right in and after her labs were drawn, vitals noted and X-rays done, the rest is but a blur. All I remember is being told that she was in critical condition with a low probability of survival. The massive tumor in her abdomen was probably some sort of cancer but she was too unstable to even be sedated for biopsy. By Wednesday they were able to do a biopsy and bone marrow aspiration as well as a temporary port placement. By Thursday evening July 11th, we were told the news. Stage 4 Neuroblastoma, originating from her right adrenal gland and invading every square inch of her tiny abdomen; attaching itself to her organs and her arteries; cancer cells present in her bone marrow and lymph nodes. The prognosis? We start chemo now and pray its works. Neuroblastoma is ugly and has a tendency to either respond in the beginning or not respond at all. And the chances of relapse are extremely high. Only 1 in 5 children survive this (those were the most recent statistics at that time). We no other choice but to fight.
Jillian handled her treatments in her own way, the dramatic way. Most days all she wanted was to watch movies over and over. On good days she wanted to play in the hospital play room or sit on the floor with toys we brought from home. Bad days, her spicy personality made her throw things and lash out at me, since I was always there and she knew I was never leaving her side. Through six cycles of chemo, a couple trips to NY for surgery and stem cell transplant, 20 rounds of radiation, numerous tests and scans and six cycles of painful immunotherapy, she never lost her spiciness. She would dance and sing down hospital corridors with me dragging her “Jilli tree” aka an IV pole along behind her. She loved an audience. And by some miracle she beat this monster. She won. She was declared NED (no evidence of disease) April 2, 2014 but still had to finish protocol. She completed treatment on September 21st, 2014 and has remained cancer free since.
The obstacles of cancer treatment for my family were huge. My husband had just started a brand new job so getting time off was not much of an option. Thankfully we had good insurance and I was able to quit my job to be with Jilli 24-7. But the copays and deductibles were relentless. We had to fight the insurance company to pay for some necessary procedures. Our marriage was already strained and we had a 6 year old daughter just starting first grade and she needed her mommy. When everyone in the family was breaking down; I was the only one strong enough to be the rock. I had no choice. The war was fought and won. I can honestly say that I still suffer from PTSD because of it. Our marriage ended eventually and we are still picking up the pieces from a life that once was normal. But what is normal anyway? I was once told by another cancer mom at the beginning, “normal is just a setting on a dryer”.  She was right. Every chapter we face a new normal. Jillian is starting to forget all she went through.  Her growth has been affected, she requires hearing aides to help her hear high frequency sounds, she has some skin and bladder issues, and she fatigues easily when doing a lot of walking. But she is brilliant; very smart!  And she is brave and talented and funny and has a personality on her like no other.  She is a fighter and my inspiration.

Jillian’s support page

Hope session by Susy Martinez Photography | Facebook | Instagram

Meet Logan – Neuroblastoma

Meet Logan – Neuroblastoma

Logan’s journey began with a stomach ache and an emergency room visit on November 18, 2014. Two months later, to the day, after 4 pediatrician visits and 3 emergency room visits; Logan was diagnosed with Stage 4 High Risk Mycn Amplified Neuroblastoma. We were in the hospital for a month before being able to leave, and our lives were changed forever. Our worst nightmare began, a journey that will last a lifetime for us and for Logan.

Logan had six surgeries in the midst of five rounds of chemotherapy, followed by stem cell transplant, radiation, and immunotherapy with two more surgeries. We were able to utilize holistic treatments like an organic feeding supplement called Nourish, essential oils, and other treatments to hopefully negate some of the damage of chemotherapy and to heal Logan’s body from the inside out. We are now in the middle of a 2 year trial called DFMO that will hopefully keep Logan cancer free forever! The trial will end in May of 2018 and then hopefully we will be done with treatments forever.

Logan has scans every three months to watch for new cancer growth. There are lots of side effects from the poisons that are put into a child who has cancer. He has had hearing loss from the treatments but we worry about  significant health risks including new cancers.
The diagnosis and treatments have affected our family in every way. We went from being a “normal, every day” family to being a cancer family with all that comes with that. Massive medical bills, time apart from each other, side effects from chemotherapy and treatments, fears that come from every ailment, dealing with insurance, and the constant worry that comes from having to think about Logan’s future are all things that now make up our new “normal.”
There have been many obstacles along the way that have been difficult such as caring for three other children while traveling for Logan’s care. Being gone for days and weeks on end and most of all the fears that come every single day when Logan has a random fever, a stomach pain, or any ache that causes us as parents to fear that the cancer is back has all taken a toll.
 We have been so very blessed in our journey. Our community, friends and family, have surrounded us by raising money for medical bills, bringing us suppers, and loving us and our four children. Our faith in God has been an integral part of our journey. I am so thankful that in our weakest moments, we had the faith of our family, friends, and community surrounding us to hold us up!  It took a village to get us this far and we are so thankful to every person in that village who was a part of our journey and who will continue to be a part of our  journey in the future!
We have walked through a valley no family ever would want to walk through, but we are walking out with our faith intact and are excited about the future that God has led us to and Logan’s testimony in the future.  God has turned our ashes into beauty. The fact that we are now able to walk through this valley with other families who are going through the same thing that we have and hopefully we are able to give them a bit of hope and and an ear from someone who truly understands what they are going through.
Thank you again for this amazing organization that blesses families just like ours!  Our photographer was amazing and we are so grateful to her for her gift to our family and your organization for putting it all together!  It was a dream come true for us to be able to go to Hawaii for Logan’s make-a-wish. The cherry on top for us to have family photographs that we will treasure forever and that we will be able to pass down not only to Logan, but to our daughters for a keepsake!
 

Logan’s support page

Hope session by Kacey Norris Photography | Facebook | Instagram

Meet Jessen – Neuroblastoma

Meet Jessen – Neuroblastoma

Jessen loves to smile and he makes others happy without even trying to. He loves fast cars and big trucks. For a long time, he really loved tractors and farm equipment and he is really good at painting/drawing. He actually does paintings for some of the big agriculture fundraisers where we live and his paintings are auctioned off. So far, his paintings have raised over $11,000 toward ag scholarships for local youth, the 4H loan program, the Boys and Girls Club, and various other programs through the California Women of Agriculture. He is such a personable little guy and everyone who meets him is drawn to him. He has made so many random friends! Once, on a flight, the man sitting next to us wrote a poem for him. Another woman on another flight made a blanket for him and mailed it to him. We were at a concert and the people in the row behind us are still in contact with us because of Jessen being so friendly. Jessen once sat in a waiting room for an appointment and the only other person in the waiting room was an older man. Jessen sat and talked to him about tractors for about 45 minutes. The man thanked him for the conversation and told him he made his day so much better. Jessen is just amazing! He loves to be outside, he loves country music, and he is such a fun loving person.

In March of 2013, Jessen was having multiple episodes of vomiting, stomach pain, constipation, getting super tired easily, weight loss, and was anemic. We discovered he had Stage 4 High Risk Neuroblastoma. He had 6 rounds of chemotherapy, a surgery for biopsy of tumor/placement of central line, another surgery to remove the tumor, and an emergency surgery for bowl obstruction due to scarring from previous surgeries which resulted in placement of an ostomy for 3 weeks. He then had to have another surgery to reattach intestines, 12 rounds of radiation, 6 rounds of antibody treatments, and finally a surgery to remove the central line.

Jessen currently continues to go for follow up scans, labs, and appointments every 6 months. His follow-ups are a 2 day process at a hospital that is 3-1/2 hours away from where we live. We stay at a hotel when we have to go. He has to have an IV placed so that he can have labs drawn and 2 types of dye injected for his scans (MIBG and CT) and he has a PTSD type episode each time an IV has to be placed where he is completely inconsolable and is shaking, crying, and screaming until they remove the IV.

Jessen and I lived together in a house with our pet cat prior to his diagnosis and I worked as a therapist with kids. When he was diagnosed I did not work at all through his treatment. We had to give up our cat and move out of our house. We moved into my mom’s house with her (she was living alone because my dad, Jessen’s grandpa, had just passed away from acute myeloid leukemia just 6 months before Jessen was diagnosed). We were not home very often due to his treatments and hospital stays. When Jessen’s treatment ended the end of May 2014, I went back to work, but only 3 days a week and not as a therapist. Jessen still had frequent follow up appointments at that point and we also just wanted some time together outside of the hospital. I finally went back to work full time in November of 2016 and am working at a foster agency. We are continuing to live with my mom.

When Jessen was in treatment he asked me if he could go to the grocery store with me when he was all better. After that, I started keeping track of everything he asked if he could do when he was “all better”. He wasn’t really one to watch cartoons, he tended to watch the Discovery Channel, Animal Planet, the Travel Channel, TLC, etc. So, he asked to do some pretty crazy things for someone his age. I didn’t want to call it a Bucket List so we call it his “Live Life to the Full-List”. Jessen has been parasailing, hot air ballooning, zip lining across mountains, deep sea fishing, and has traveled to Oregon, Washington, Nevada, Illinois, Florida, and all over California doing all sorts of adventures. We continue to add to his list and consider it our never-ending to-do list.

Jessen’s support page

Hope session by Nadeen Flynn Photography | Facebook | Instagram 

Meet Camden- Neuroblastoma

Meet Camden- Neuroblastoma

You know from the womb how amazing your child is going to be. Not because you’re the mommy but because the energy and feelings that surge through you as your baby grows! Every now and then though comes a child that will take the world by storm. These aren’t your average little ones, these are your real life superheroes that will steal the hearts of many with a courageous journey and the beginning of a fighter’s story.

So here goes Camden’s….Camden was born November 17th, 2015 with a condition known as Gastroschisis. This is when there is a hole in the abdomen that gives space for the intestines to be outside of the body. He spent several days under the care of Pediatricians at the Children’s Hospital of Philadelphia until they deemed him stable enough to perform corrective surgery this. Thirty-seven days after his birth we received a Christmas blessing! He came home on December 24th to his family and loved ones.

The past year has been a journey though, he has gotten sick several times and been in and out of doctor’s offices without any diagnosis that could explain what was going on. On his 1st birthday he was able to celebrate with his family at Disney for several days. However, once again he became sick and upon his return to Pennsylvania had to go to the E.R. On November 27th we received the news that no parent ever wants to hear. Camden was diagnosed with a rare type of cancer called Nueroblastoma. As a result he was sent back to CHOP to begin this new fighting journey!

His Pediatric Oncologists estimates that he will require extensive treatment for approximately one year of chemotherapy, surgery, and several other types of treatment required to get him through this. At this time he has a strong team of people that love him dearly and will do anything possible to make sure he gets through this. However, this is a very sensitive time for his family and they need lots of love, supportive words, encouragement, prayer, and positive vibes. 

Camden’s support page

Hope session by Carrie Kizuka Photography, LLC. Facebook | Instagram

Meet Raygan – Neuroblastoma

Meet Raygan – Neuroblastoma

Raygan is an amazing, God loving, carefree soul. She has never met a stranger and greets everyone with a smile. She enjoys dancing, ballet and tumbling. She has a glow that radiates SUNSHINE.

In May of 2013, we noticed a lump in stomach under her rib cage. She was diagnosed with high risk Neuroblastoma Stage IV. After numerous rounds of chemotherapy, immunotherapy, radiation, a stem cell transplant and surgery; she is now a survivor!

We live everyday like its our last. We try to let her experience as many things in life as we can.She has a unique outlook on her life as a survivor and know she was put on this earth to do great things in her life.

Raygan’s support page | Instagram

Hope session by Aubrey Gee.

Facebook | Instagram

Special thanks to the following vendors: Coordinator/styling: Haleigh of Sweet Southern Party, Venue: Swannanoa Palace, Hair: Hair By Austin G & Makeup: Makeup by Ola.