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Courageous Kids Fighting Cancer: Delilah, age 6, leiomyosarcoma + progression of B-cell Non-Hodgkin’s Lymphoma

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Delilah or “Dee” is a 5-year-old little girl currently fighting leiomyosarcoma plus progression of B-cell Non-Hodgkin’s Lymphoma. Dee’s story begins a few months after she was born in February of 2013. Between July through the beginning of August in 2013, her mom’s parents would take care of Dee so that her mom and dad could go on dates and attend church. Her mom says, “One evening when I was picking her up to head home my mom mentioned to me that she noticed that Dee had a bump on the right side of her neck area. I personally didn’t think much of it, and after some time my parents were insisting for me to take her in to her Pediatrician.” The pediatrician said that it was nothing to be concerned of and perhaps she was about to get a cold and her body was trying to fight it off, she had no symptoms what so ever.

As the weeks passed by, her mom and dad started to notice her bump getting bigger and bigger. But the doctors said exactly what they said the first time. When August 2013 came around, it was time for Dee’s 6 month check up. Her mom said, “Me and my husband met at my parents’ home to pick up Dee and take her to the Appointment. Once we arrived and checked in, we’re waiting in the room for her doctor to come in to begin to do her routine with Dee. She checked her ears, eyes, throat, temperature and once again I expressed my concern about the lump in her neck. I remember her connecting Dee to the oxygen monitor and immediately saying we had to take her down to do an x-ray of her chest. I remember her nurse walked us down to the first floor to take us to radiology. I remember putting my daughter down while they tied her down so she wouldn’t move. My heart broke and tears came down my eyes because her cry at that moment didn’t feel right to me.” The doctors then said that they had to rush Dee to the Kaiser Emergency room because it seemed as if she had pneumonia and her oxygen was very low. They did a CT scan, where they said they saw some type of nodules in her lungs, and she had to be transferred to another hospital.

Dee’s mom said “I clearly remember calling my mom crying and telling her “I don’t know what’s happening, this doesn’t feel good and I’m scared”. I remember her telling me that all I had to do was pray and ask God for understanding and patience.” Upon arriving at the next hospital, the doctors said they needed to schedule a biopsy the next morning. Once the procedure was over, she said, “the doctor met with us and said that when he went in to take a piece out, he measured the size of the mass and stated since it was the size of a GOLF ball on one side of her neck he decided to remove it all because it was pressing against her airway.” Her parents were told that they would send it to their pathologist to figure out what exactly it was. Days passed and they were anxious and wanted answers until one day they received a call from the doctor in L.A. “I remember him telling me “We got the results in and you need to make an appointment with the pediatric oncologist over at Kaiser in Anaheim. They are aware of the results and are expecting your call to schedule an appointment.” Once I heard this I remember asking myself “what in the world is oncology”? I picked up my phone and I remember researching it “Oncologist treat cancer with chemotherapy” and there it was the big C word CANCER.”

The oncologist informed them that Dee had Langerhans cell histiocytosis (LCH) and that she had to begin chemotherapy as soon as possible. Over the next few weeks, Dee received many different types of chemotherapy treatments and nothing seemed to be helping and her cancer seemed to be progressing. December of that same year, doctors told them that she now needed a bone marrow transplant. Her mom had mix feelings, “my daughter was a patient at Kaiser of Anaheim and we ended up finding out that there were in contact with a doctor at CHOC who specializes more in LCH.” Once at CHOC, Dee started about 3 different types of chemo treatments but unfortunately nothing seemed to work. After that they were informed that there was a clinical study medication that she could possibly benefit from. The name of the medication was Dabrafenib and they decided to put her on this clinical trial. Dee was on this trial from spring of 2014 to fall of 2016, she was stable and some of the lesions in her body seemed to be shrinking while others seem to be stable.

In August of 2016, a few months after her little brother was born, Delilah’s mom began to see a difference in her, “little by Little her appetite decreased, she began to lose weight drastically and she stopped speaking.” The doctors said nothing was wrong, but things kept getting worse until the doctors finally asked; “When were her tonsils removed?” They had never been removed. “In less than an hour my daughter was on the 3rd floor Pre-Op Surgical area because she had to get a laryngoscopy done. I thought it would be a fast procedure of an hour or so, and one hour turned into 4 hours.” Dee was diagnosed with a secondary cancer, B-Cell Large non-Hodgkin’s lymphoma. She remained in the hospital for 6 months and was able to go home in March of 2017.

In December of 2018, Dee’s parents were told she had two tumors in her brain. “December 17th was her first radiation treatment and since we were at the hospital we would go on what I call a “field trip” she would ask “mom where are we going?” and I would say “we are going on a field trip again and mommy will be in the front of the ambulance to assist the driver”. Monday, Wednesday and Friday of that week she went on fieldtrips. The next day after her last radiation, Saturday the 22nd we got discharged and we went home to spend what could most likely be our last Christmas with our princess.”

Recently, Dee’s mom said she “received a call from her oncologist that has known us and taken care of her since she was a baby. “Things don’t look good and her brain is swollen and we’ve tried everything, I’m sorry.” Of course, I began to cry and I couldn’t catch my breath to the point where I couldn’t even speak. Have you ever spoken to her about heaven?” “yes” I replied “I talk to her about heaven and the angels”.

Her mom said, “Today I woke up determined to tell you a bit of our story and Delilah’s Fight! I ordered your book on December 1stof 2018. A few minutes after I submitted my order, the NEGU team was right outside our door. Someone came in and handed Dee a JoyJar and they said “mom I have a gift for you too”. I didn’t think too much of it and I was handed a folder and I put it in my lap and they said open it, inside there was a check for $1,000. NEGU really helped me when I needed it the most and it was totally unexpected. I began to cry and I couldn’t even say thank you since I got super emotional. A man said “I know firsthand what you are going through. I myself have been through this journey many years ago.” I knew my husband was stressed about our bills since I resigned from my job 3 years ago to take care of my daughter full-time. I wanted to redo Delilah’s make a wish but I knew that would be impossible. I spoke to child life and I expressed interest in wanting to take her to Disneyland with a few of our family members and that any help or discounts they could provide us with I would appreciate it 100%. What I was told was “we would be more than happy to help” They said, “I’m going to reach out to the Jessie’s Rees Foundation and they will be more than happy to help” The Rees family and Jessie’s foundation has been in my heart and on my mind since December.” She said, “Today I will be registering to be part of The Club Negu! Thank you for continuing to bringing joy to children fighting cancer and their families.”

Delilah recently got a birthday JoyJar, her mom wrote us and said, “I wanted to personally thank you for thinking of my daughter on her special day. She received her JoyJar which brought much happiness and Joy. We hardly ever see her smiling and to see how much she smiled that day when she received and opened her Joy Jar was priceless to us. Thank you once again for being part of my daughters 6th birthday.”

WE NEGU FOR DEE!

 

 

 

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