Emma was born in Coral Springs, FL, on July 12, 2006.   Emma was a perfectly healthy, vibrant, and happy baby. She completed our now family of four! She grew to be an inquisitive and loving toddler who was always on the move.   She was always smiling and giving love!   We noticed early on that Emma was a special kid. There was just something about her that drew people to her.   She loved everyone and was not afraid to show it. As early as her preschool days, she always included others.   While in elementary school, Emma was always one of the students to help anyone she thought needed it. Whenever I met with a teacher or another parent, they would tell me how friendly Emma was to everyone.   This is just who she was. It was just natural for her to be kind. On the rare occasion that she thought she may have done something unkind, she felt terrible and was always sorry!   This same attitude followed her through her middle school years. She just loved people and loved seeing people happy!    Emma was an active child and did not like to sit still. She always wanted to be busy! From age 3, she was involved in many sports to keep her active. She started with Soccer and moved to gymnastics, softball, and eventually to cheerleading, where she found this to be the sport she loved.

In May of 2014, at 7 (almost 8), Emma began cheerleading at Cheer Florida in Coconut Creek, FL. It was here that Emma’s story took off! She gained so much confidence, respect, and strength.   She made many friends and truly loved everyone at her gym.   She worked hard on her skills and attended all practices and competitions for her five seasons at Cheer Florida. It was here that she indeed found her village!   She spent three seasons as a Unicorn and 1 1/2 seasons as a Siren.   She gave it her all every day on the mat until she couldn’t anymore!

On August 22, 2018, Emma had a seizure at the dinner table just before going to cheer – This was the start of what was soon to be “her cancer journey.”

Emma had a seizure (which we did not know that was what it was at the time). We called an ambulance, and she was going to the ER within minutes. It was not until an MRI the next day that we thought something serious was wrong. After having the MRI outpatient, I received a call less than 30 minutes after leaving the MRI facility from Emma’s doctor that the radiologist had called her and we needed to take Emma to Nicklaus Children’s Hospital in Miami for further testing as they saw what appeared to be a lesion on her brain. The rest of the day was a blur as we hurried home, packed some items, and headed to Miami for the start of the longest 526 days of our family’s life.

Emma’s Cancer Journey Timeline

August 22, 2018 – May 28, 2019 – Emma had a seizure at the dinner table, leading us to the ER and then to Miami for additional testing. She was diagnosed with a benign glioma. We planned to watch it closely, follow up with a neurologist, and have periodic scans.   Like any parent, we did our due diligence and brought Emma’s case to multiple doctors for 2nd, 3rd, and 4th opinions. We also spoke with doctors in all the prominent children’s cancer hospitals across the United States and as far away as Israel! This journey led us to the best doctors for our situation at Joe DiMaggio Children’s Hospital.  With Dr. Dean Hertzler and Dr. Diana Martinez taking the lead, we were in great hands with our “follow the tumor and watch it closely approach.”

Over the next few months, we tried to keep things as normal as possible for Emma.  She was allowed to continue everything she had always done as tolerated.  She managed school, cheer, friends, multiple doctor appointments, and scheduled MRIs as best she could.  She was battling headaches and had several EMG studies to see how best to handle medications that were being added and changed as needed.  She had her 3-month scan at the end of November 2018.  All seemed to be status quo.   It wasn’t until her February 2019 scans that any changes were noticed.  During these scans, we noticed some changes in the tumor and, for the first time, discussed possible surgery over the summer of 2019 to remove this benign Glioma.   Then, at the end of April 2019, Emma had a headache that was the worst that she had ever had.  She wound up in the ER, and new imaging was done.  Due to this imaging, we spoke with the neurosurgeon and decided it would be better to schedule surgery sooner rather than later.  Surgery was scheduled for 5/29/2019.  We were sure this was going to be exactly what was needed.  We hoped the tumor would be removed and all symptoms would soon disappear.

May 29th, 2019 – Emma had a bilateral frontal craniotomy performed, and a complete resection was done.  The tumor was removed.   As she rested comfortably and was recovering, we just needed to wait for the preliminary pathology of the tumor.  We were confident we would be in the clear!

June 4th, 2019 – Emma’s preliminary pathology returned, rocking our world.  We were not prepared for this!   The report showed that the tumor had changed and that it was now a high-grade malignant glioma.  The news rattled us to the core.   It was confirmed that our baby girl had BRAIN CANCER!   We would need to wait for the official pathology to be completed to confirm type and staging.  We were whisked from the step-down neuro unit to the cancer floor, where we would await the confirmed results.

June 11, 2019 – Our sweet princess’s fate was confirmed.  She was diagnosed with a Grade IV Glioblastoma Multiforme.  Coupled with her mutations, this was very rare for a young girl to be diagnosed with. As we listened to our oncologist, our minds just continued to spin.  How could this be?  How could this be happening to OUR girl?   Our plan of action was being developed and worked on.  Our doctors were consulting with Miami Cancer Institute, Sloane Kettering, and St. Jude to put together the best plan to give our girl a fighting chance against this terminal disease.

6/14/2019 – We met with our radiation oncologist at Miami Cancer Institute to review our plan and begin the process of this clinical trial. We were ready to begin after 5 hours of questions, testing, and simulations.

6/17/2019 – And the process begins. 3 1/2 hours of MRIs were completed.  We needed these to ensure the Glioblastoma has not spread to the spine (due to clinical trial protocol) and to map out the precise points for the proton radiation.

6/20/19 – We received the first of many blows to come along the course of treatment for Emma. The MRIs completed three days prior showed a 3mm nodule on Emma’s spine – meaning that the cancer had begun to spread and she would no longer qualify for this clinical trial.   The doctors (including all affiliates) and we determined we would continue with the radiation we planned and add on radiation to the spine – however, the medication will differ.  Although we were out of the trial, we were still optimistic that the treatment determined to give us the best chance at beating this!

6/27/19 – Our sweet Emma began her radiation and chemo journey.  This journey did not start off well.   Emma took her chemo meds about 2 hours before we left for radiation.   On our way to Miami, Emma threw up the entire time.  When we arrived, she was pale, sweaty, exhausted, and dehydrated.  After administering some IV Zofran and IV fluids, she completed her radiation, where she was a Rock Star!  Our Emma was a fighter.  A brave believer and a lover of life. We continued this same combination every weekday for seven weeks!

7/2/2019 – Emma had another MRI to confirm that the nodule they saw on her spine was a tumor.  Not only was it confirmed that it was a tumor, but there was now a second one right next to it. They confirmed the additional radiation to her spine would begin on Monday!   We were also told our daughter has 1 – 1 1/2years to live.   We refused to believe this.  Emma was not a number or a statistic. She would beat this!

7/28/19 – Emma showed signs of doing too much and not listening to her body.   She ended up in the ER.  She needed anti-nausea meds by IV and some fluids.  She was very tired and had no appetite.  She also showed signs of hair loss, which is hard to see.  The doctor was worried about her weight loss.   We were seeing signs of the disease taking a toll on her.  However, in true Emma fashion, she had her moments with us of feeling “blue” but then put on her strong, brave attitude and walked around with a smile!  She was blessed to have the most amazing friends by her side every day!   It helped so much!

8/15/2019 – Emma had MRIs the previous two days because of her symptoms over the last few weeks.  Unfortunately, these scans revealed that the tumors on the spine had not grown, but they had not gotten any smaller either.  Additional tumors were found on her cerebellum, cervical, thoracic, and lumbar spine. We were working with doctors and hospitals nationwide to determine Emma’s next course of action.  While this news was devastating, our princess remained positive and upbeat and was ready to continue to fight this monster.  She was amazing and inspired us daily with her positive attitude, given all that had been thrown at her.

8/19/19 – This day was a bittersweet day as Emma was notified that her Make-A-Wish trip to Bora Bora had been granted.  It was amazing to share this with family and friends and to celebrate the true warrior Emma was!

8/21/19 – We began our new action plan at Shands at the University of Florida.   After looking into trials coast to coast and around the world and being denied by most, it was determined by us, Emma’s current doctors, St. Jude, and Dana Farber, that an individualized trial at Shands was our best option.  So here we were.  We spent the day with top doctors, learning the complications of Emma’s condition and what the latest MRIs revealed.  On top of Glioblastoma Multiforme, Emma was diagnosed with Leptomeningeal Carcinomatosis.  This is a rare complication where the cancer spreads to the membranes surrounding the brain and spinal cord.  We were working with one of the top brain tumor doctors in the country.  While we had been approved for her diagnosis, we still had to wait for insurance to approve the drug combination.   This combination of medications was accompanied by TOMO radiation. The medication combination included an immunotherapy drug given by IV and two cancer-fighting inhibitors taken orally. We were doing our treatment plan between Shands in Gainesville, Joe DiMaggio in Hollywood, and Miami Cancer Institute in Miami.  Although this was not a cure, we hoped it would buy us more time to find our miracle!

8/28/19 – The targeted immunotherapy individual trial began at Shands in Gainesville.  We hoped this targeted therapy and combination of drugs would drastically reduce how quickly this monster spreadinside of her.  As we walked around the halls of Shands, my princess was concerned about the other patients and what was happening with them instead of herself and her own treatment.   She had nothing but compassion and kind words for everyone she met.  She greeted them with a huge smile and made each child she spoke with feel special!  She was one amazing child.  Emma became achy and nauseous about an hour into our ride home from the first treatment.  As the ride progressed, so did her symptoms.  She felt so badly she could not stop crying. By the time we got home, she was throwing up and weak.  Unfortunately, this was CHILDHOOD CANCER, and it sucks!   As parents, we could not improve it; all we could do was hold her and comfort her.  It had been no different for her during the week with the TOMO radiation.  Additionally, they had to change her seizure medication around as it interacts with these new medications.  As tough as this week had been for her, she still managed to be polite, happy, and understanding with her doctors.  She remained optimistic that the benefits of this treatment would eventually outweigh the side effects.  Through all of this, she tried to keep up with her school work and participated as much as she could at cheer.  She was truly amazing!

9/24/19 – WE RANG THE BELL!  Emma completed 45 radiation treatments between Photon and Proton radiation.  So happy that she could ring the bell surrounded by family, friends, and her treatment team!  Unfortunately, she did not ring the bell because she was cured – but she rang the bell because there was no more that the radiation could do.  We hoped the individualized trial would come through and we would start seeing positive results.

10/28/19 – Emma had to un-enroll from school.   It was just too much.  Emma continued her schooling through Florida Virtual.  Also, Emma’s MRI scans were moved from the first week of December to today due to concerning symptoms.  She was getting headaches again, neck and back pain, numbness, and tingling. She was also getting sharp pains in her head when she moved positions.  Unfortunately, the results were not good – AGAIN!   There were more tumors, bigger tumors, cord swelling, and Leptomeningeal Carcinomatosis.  We followed up in Gainesville and then in Miami the day after.

11/14/19 – Emma had another seizure. This put us in the ER and ultimately inpatient to rule out a brain bleed, a side effect of her new medications.   Her seizure medication was increased.  She had also developed a rash resembling bad acne all over her face, back, and legs.  Despite everything, She smiled on the outside.  She wanted to believe.  She listened, and she watched.  She hoped, and she dreamed.  She was strong, and she was so brave!

11/29/19 – Today, we woke up in North Carolina after a wonderful Thanksgiving with family.  Unfortunately, Emma did not wake up feeling well.  She was vomiting and had seizure-like symptoms.  We went to the ER in North Carolina.  They had it under control in a few hours but suggested we go home early and follow up with our doctors ASAP.

12/2/19 – Today, we spent 4 hours in the MRI machine.  After a scare of thinking that the scans were leaning toward hydrocephalus, we were relieved to learn that it was not.  Although her ventricle was inflamed, it was due to the medications she was on and the treatment regimen.  After a night in the hospital for further testing, this was confirmed to be the case.  It was also discussed that it was time for Emma to have a port placed after her next infusions.   Her infusions have become too much for her little veins to handle.   This will ultimately make her infusions easier.

12/25/19 – Emma could not bear her headache in the early morning hours today.  She was vomiting, and we got to the bathroom, where her legs gave out, and she could not walk.   We carried her to the car and headed straight to the ER.   We never expected what was next. After blood work, CT, and EMG, it was determined that there was nothing more they could do for Emma’s cancer.  It continued to progress alarmingly, and shewould NOT get better.   We were admitted to hospice, receiving pain management care.  She was stable but not responsive.  The tumors in her brain had significantly increased in size, and her body was not reabsorbing the spinal fluid, which was causing fluid in her brain.

1/30/20 – Emma received her angel wings at 11:40 am.  She was an angel to us here on earth and is now an angel for everyone in heaven!

Although her cancer story was short, she endured so much during that short time.   Through it all, she remained positive, kind, loving and compassionate.  She never gave up, and she never said why me.  During the eight months between her diagnosis and death, she was able to pack in so much.  So much of what she had on her to-do list was done.   She was able to go to Waco, TX, to see Magnolia.  She spent the week of July 4th in Islamorada.  Emma got to celebrate her 13th birthday surrounded by family and friends.   She took a couple of amazing trips to Marco Island, one of her favorite places.  We went to West Gate River Ranch and experienced a live rodeo, horseback riding, and many other wonderful things there.   Emma took her MAW trip to Bora Bora, an experience our family will never forget.   She was honored to be the Jr. Captain for the 2019Winterfest Boat Parade and was happy to share it with her family and friends.   Emma met the Miami Dolphins Cheerleaders she admired and spent some time with them in their studio.   She was honored with fundraisers in her name, such as a Golf Tournament, a Poker Tournament, and a fitness day.  She participated in a Make-A-Wish Walk and a St. Jude walk.  Emma spent Thanksgiving in North Carolina with her family, attended ICE and Mickey’s Very Merry Christmas, and a weekend at Disney World with some of her cousins.  She was blessed to have so much support from her family, friends, and Cheer Village. Emma walked through this journey with her head held high, a smile on her face, and love in her heart.   She was a warrior who never gave up.  Even with a terminal diagnosis, she lived life to the fullest and #SpreadHerSparkle wherever she went.  We should all #LiveLikeEmma!