- Posted June 16, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
Believing For Desi
April 16, 2014 is a day we will never forget. We were told at our local hospital (Eisenhower) in the ER the results of our 4 year old daughter’s CT scan. Thinking worst case it was her appendix causing her all this pain. Her doctor asked to speak with us outside her room and at that moment when the words started coming out of her mouth, I felt like I was in the twilight zone. I was having an out of body experience. I was standing right next to myself looking at this doctor catching only certain words like “I’m so sorry”, “very large tumor”, “cancer”, “aggressive markers” and the big one… “neuroblastoma”, at that point I went into immediate denial & defense. We sobbed and we swore and we paced the hall outside her room. This news was just so shocking that our brains were not processing it. Not knowing what to do with this life altering information we were just given, we screamed out, “Nooooo!!! this isn’t happening, this CAN’T be happening, this isn’t real, we’re in a nightmare, we’re gonna wake up… why Desirae, why our daughter?!! No, they’ve read the wrong scan, they got hers mixed up with someone else’s, she doesn’t have cancer, look at her, she looks absolutely perfect!” It was a whole plethora of emotions. We had to get it together because our daughter was still awake and still in pain, just a few steps away from us, in her room. We had to walk into that room and not let her see our heartbreak, our devastation or our fear. We somehow had to explain to her that she was very sick and we were going for a ride to another hospital, only this one was just for kids, just for her. And off to Loma Linda we went.
Not knowing we wouldn’t see home for 16 days. Not knowing the nightmare was only beginning. The next five days, Desirae endured every test, scan and procedure, known to man. So much blood was drawn, so much urine collected… A bone scan, a PET scan, an MIBG scan, more blood, more urine, a posterior tumor biopsy, a bone marrow biopsy, more blood and more urine. We felt like the plague during that time as no one wanted to approach us, no one wanted to share what they already knew, we were the newbies… On April 21, 2014 (Daddy’s birthday), Desirae was diagnosed with Stage 4 High Risk Neuroblastoma. It had spread to her bone marrow, her lymph nodes and in some areas of her bones. We were told days before, that her tumor was inoperable due to the size (10 cm x 9.5 cm) and the location (starts from left adrenal gland goes across her abdomen, downwards towards her trunk and is growing and wrapping around aorta, which is your main and largest blood vessel in your body). Treatment began immediately. We were looking at 5 rounds of chemotherapy, followed by a stem-cell transplant, followed by radiation, followed by immunotherapy. At least 8 months… At least.
Desi just completed round one of her chemotherapy. We are suppose to go home for a 3-wk break but that hasn’t happened as Desi’s had complications and high fevers. There’s an entire new world ahead of us now. One that is uncertain and very scary. One thing people asked the most was, well what’s her prognosis? We told them this… “We didn’t ask to hear about statistics or numbers, we don’t care about those. Our first and ONLY relevant question was, “Okay, so what are we gonna do to save our daughters life and when are we gonna do it?!!!!!!” We needed to know that there was still a chance, no matter how small it was… Our daughter, this amazing, wonderful, beautiful human being, IS gonna be THE ONE to defy those odds. Hopefully you’ve found her website (www.BelievingForDesi.com) because you want to join in her fight and in our fight to tackle this ravaging disease that leaves families powerless. Welcome to the battle.
This is our daughter, Desirae Ava Grace Cechin. She is our world and the greatest love of our lives. Below is a video slideshow of Desi over her 4 years of life. You can see how LOVED and happy she is. You can see the life and the fight in her eyes.
I am sharing their story because this little girl Desirae "Desi" Cechin needs this treatment.
Please join in their fight and help them raise the funds that are needed. He community where she lives The Coachella Valley (yes home to the Coachella Festival) is trying to raise the funds needed for her treatment at Memorial Sloan-Kattering Cancer Center. Desi is currently in her 3rd round of Chemo at Loma Linda Children's Hospital and this round has really been a bad one. We need you to please help us get her the treatment she needs. This family needs to raise $300,000 for her treatment at Sloan Kattering. $300,000? Think about that. They just found out their daughter has cancer in April and now they need to come up with the money within the next 75 days. It's impossible without peoples help and donations. Visit WWW.YOUCARING.COM/BelievingForDesi
$71,835 has been raised as of right now. It's all been raised by people from The Coachella Valley and other parts of the States. Please help Desi raise awareness and raise funds by sharing her story.