This GoFundMe is for my daughter, Emily, an 8-year-old, diagnosed in September on 2021 with DIPG (diffuse intrinsic pontine glioma). DIPG is an aggressive, life-limiting brain tumor. Emily is currently at Rady Children's Hospital for end-of-life care and symptom management. Emily has been the biggest blessing in my life. She came into the world as a beam of light: radiant, resilient, and happy. It is amazing, that even in her current condition, she still manages to smile. I, and her family and friends adore her.

 I am a single mom and have been caring for Emily throughout her illness in the best way I can. It has been hard to accept the inevitable; but as I began looking into funeral planning, I was astounded at the costs. I would really like to honor her with a proper burial and funeral in San Diego--these funeral expenses are simply daunting. It is hard for me to ask, but the reality is, I really need help. If you can contribute in any way, Emily and myself would be immensely grateful and blessed.

 Thank you in advance for your kindness and opens hearts!!!

May you be blessed a-thousand-fold.

Zenaida

(Mom)

If you would like to know more about Emily's Journey, here it is: 

Backstory In mid-2021,

 I noticed Emily's demeanor start to change. Without warning, she would get flustered and angry, and was not her usual self, for hours at a time. At first, I attributed this as expected behavior for a 6-year-old adjusting to a new city, state, having just moved to Phoenix, Arizona, earlier in the year.

These were significant changes in her life; maybe this was her way of adjusting. As the weeks went by, these changes slowly became more pronounced. They started to be accompanied by nausea, headaches, loss of balance, misaligned eyes (esotropia), and other slight indicators that something wasn't right.

Emily's increasingly irregular behavior and changes in appearance, mainly her eyes, prompted a doctor's visit in August 2021. The first specialist that saw Emily assessed her health as within normal bounds and assured me that a visit to an ophthalmologist for corrective lenses was all she needed. I wasn't convinced, so I rushed Emily to see her pediatric doctor in Mexico for a second opinion during her school break in September. He saw Emily, noted the changes since he had seen her earlier in the year, and listened to the symptoms before suggesting labs and a CT scan to rule out a tumor. It sounded absurd then, but as I look back at photos and recall my memories, I ask myself how I didn't see something like that coming. The CT scan went terribly. Emily was terrified, and the nurses felt they needed to restrain her physically throughout the procedure. Emily was traumatized by this experience.

That evening, once back in San Diego, I received the raw, uninterpreted digital results from the CT scan. Since the doctor's office estimated I'd hear back from a doctor within a week, I forwarded those copies to a friend in Mexico City, who specializes in neurosurgery, for his opinion. While he cautioned that an MRI would be required to validate what he saw, he urged us to head to the nearest Emergency Room immediately without elaborating.

 We checked in to Rady Children's Hospital in San Diego in the afternoon on September 29, 2021. Over the next couple of hours, Emily was triaged, evaluated, and placed in holding until an MRI could be performed. Due to the traumatic experience Emily had just had the day before with her CT scan, her treating doctor recommended she get placed under anesthesia for this scan.

We were moved to the Pediatric Intensive Care Unit (PICU), where nurses prepared Emily for the procedure, and we waited to hear back. After some time, we heard back. Doctors informed me that the MRI indicated Emily needed immediate brain surgery to do two things: 1. extract a sample of a mass in Emily's skull to determine what it is and 2. relieve the significant amount of spinal fluid pressure building up above this mass. I don't know much about medicine, but hearing that and seeing the MRI images shook me pretty bad. I could see that this foreign mass took up about 20%, or more, of her brain cavity. But until the biopsy was performed, I wouldn't know what this meant. It was scheduled for October 2, 2021, so she and I waited in the PICU, under the close supervision of Emily's new doctors and nurses, until then. A few days and many signatures later, Emily was in the Operating Room (OR). Doctors explained a robotic arm would be used to minimize error and increase precision; post-surgery, she would barely notice the two holes they'd have drilled into her skull. Just as they described, Emily emerged from anesthesia, completely unaware she had just undergone brain surgery. She was ravenously hungry but, unfortunately, had to wait an hour before she could eat the RakiRaki ramen she asked me to order her.

 Emily was grumpy, but I was so happy that was the only thing she felt. We stayed in the PICU for a few days before being transferred to the Acute Care Pavilion in the Peckham Center for Cancer and Blood Disorders on October 3rd. An excellent facility, Emily (in her words) was "treated like the queen" by nurses and staff while we awaited the biopsy results. She liked being in this part of the hospital! While we were there, Emily's condition was given a name and its devastating prognosis. Emily's tumor was a diffuse intrinsic pontine glioma (DIPG). DIPG treatment, at this point, is nearly non-existent. Worldwide, only a few hundred cases are diagnosed, and patients are all children. More information about the disease may be found here.

Emily's doctor recommended she begin a two-week sprint of radiation as soon as possible, and a handful of available experimental treatments could be assessed afterward, depending on how the radiation went. I consented, and Emily was transported each morning to and from the Moores Cancer Center at UC San Diego Health by ambulance for her appointments. On October 11, she was permitted to leave the hospital, so we went home. She finished the last day of her first round of radiation on October 22nd, 2021.

Following the radiation, things went back to normal. Emily was able to walk, go to school, and do things a normal 7 year old could do. It seems we had about 6 good months--months of this "normal time," in which, we packed in a great deal of living and as much fun as possible. One of Emily's highlights, was a trip we made (thanks to the Make-a-Wish-Foudoution) to Disney World.

After that time, the tumor began to grow again, and her symtoms gradually returned. She did a second round of radiation, and in the same way, we got another 10 months of normal. I took advantage of this time as much as possible, and gave Emily as good a quality-of-llife as I could, savoring and celebrating every moment and making memories together.

On June 16, she will turn 8. We will have a small celebration in the hospital, but already had a birthday party for her a few months ago when she was still able to walk. Following this period of normal, her symptoms returned with a vengengce; and this, essentially is where we find ourselves now: at Rady's Hospital, on hospice, at end-of-life, managing symptoms and planning her transition.