“Delilah is the oldest of three siblings. She’s 5 years old and has the soul of a dancing, sweet butterfly. Just so you can get a picture of how sweet and gentle she is, this Easter she didn’t even want to crack any eggs on anyone’s head because she didn’t want to hurt them.
Now that I think back, and I know most of the symptoms for Neuroblastoma, I can actually say Delilah started showing symptoms on Christmas Eve of 2018. Not knowing a stomach ache could be a sign of cancer, I simply thought she only had a tummy ache from too many Christmas sweets. Her tummy hurt her so badly, she didn’t really wanna open gifts… but all kids get tummy aches, right?
A few days after New Years’, the tummy aches continued to come and go. I had a friend whose child always complained of their stomach hurting so I thought it would pass. On January 5th, Delilah’s grandma and grandpa and her closest cousin came to visit from Texas. Everything was awesome. Delilah hadn’t been eating much, but I thought she was just starting to get picky. I mean, she was only 4 at the time. Other than that, she was good and hadn’t said her tummy hurt. We were all outside while the kids were riding bikes. Delilah loves being a daredevil so there she went, wanting to ride her bike down a pretty steep hill for someone her age. Dad set her up at the top and Grandpa waited at the bottom. Her grandpa thought Delilah was gonna fall so he jumped in the way to stop her and they both ended up colliding. Delilah was wearing a helmet and didn’t even get a scrape. Grandpa, on the other hand, had a scraped knee. We didn’t think much of it; all kids fall off their bikes. She got back on and continued to ride.
Some time passed and we decide to take a drive up to the mountains to see the snow. On the way there, Delilah started complaining of leg pain. We thought it was just from the bike accident. When we got back home, she couldn’t sleep because her leg hurt. We thought it was growing pains or the bike fall. However, we didn’t brush it off and decided to take her to the emergency room for fear she may have pulled a muscle or may have a small fracture. They took X-rays and said everything looked fine. She may have just pulled a small muscle and it would heal on its own. They told us to alternate between Motrin and Tylenol for pain.
Two weeks passed, and the leg pain had gotten so bad, she couldn’t really get up and down to play without struggling and the other leg hurt her too. We went back to the emergency again and they said, ‘Let’s X-ray the other leg.’ Again, nothing. We finally took her to the pediatrician, who took blood and gave her something for constipation because the X-ray showed she appeared to be constipated. No one got back to me.
Two weeks later, we went back to the pediatrician because now Delilah was getting low-grade fevers that wouldn’t go away, her tummy had been hurting, and she threw up once. Mind you, we also have a daughter who’s only 2 and I was pregnant with baby #3. Going back and forth to the doctor, with pretty much no answers, was a little difficult. Finally, they did another blood test and realized her numbers are all over the place. Her pediatrician thought she had Leukemia and set up an appointment for her to see an oncologist in Los Angeles. She also said, ‘It looks like you’re pregnant, this is gonna be hard. Your 2-year-old should get used to her grandma because she will be with her a lot. It won’t be easy, but you need to make arrangements now!’
The next day, we took her back to the emergency room at night because when her daddy picked her up, she screamed and cried in pain. By this time, Delilah couldn’t walk anymore and her entire body hurt. The Motrin and Tylenol weren’t working and the jugular vein on her neck was pulsing fast and hard. They told me, ‘Your child doesn’t look ill.’ I was crying, telling them to at least do a chest X-ray. I had no idea what cancer does, how far it had spread, or if it was even for sure cancer… I just wanted to make sure she was okay. After I forced them to do an X-ray, they said everything looked fine and sent us on our way. We decided not to wait. We made the drive through the mountains to Kaiser Los Angeles to an urgent care next to the hospital and told them how bad she was. They get her admitted within 2 hours and tested her. The next week and a half felt like forever. Then came the diagnosis. We were playing at the playroom in the hospital when the nurse came for us. They put her in the bed and begin touching her all over, looking for lumps and asking me if I’ve felt any lumps. The nurse took her back to the playroom where her nana was. They brought the social worker in and told us to sit down.
Unfortunately, they said, ‘We did find a tumor. It is cancerous and spread to her bone marrow, about 95% bone marrow involvement.’ Stage 4 Neuroblastoma. They told us, ‘She’s going to have to fight for her life and it’s going to be at least a 2-year journey.’ I can’t remember if I was holding my husband’s hand. All I can remember thinking and saying is, ‘She’s only 4…’ I know this is the last thing anyone should be worried about but her beautiful long hair she loved so much was going to fall out.
The next 2 weeks felt like a blur of extreme emotions. We were heartbroken! Our Delilah has cancer. How did this happen? Your mind immediately thinks of the worse possible scenario. You have this feeling of hopelessness. You’re just mind blown and don’t even know what the next step could be. But we have such a strong support system and all our family and friends started praying. All over the world, people were praying for our baby girl and it gave us so much hope and strength when we needed it the most. It was as if God himself was saying, ‘DONT YOU SEE ME?’ We knew as long as we let God lead us in the most difficult journey of our lives, everything would be okay. My husband and I changed our ways completely and focused on only GOD and our family. Together, we started fighting this beast!
They placed a double lumen central line out of Delilah’s chest so she could begin receiving treatment. Although we had heard of side effects from chemotherapy, we had never seen firsthand what it does to someone.
Before I go on, let me backtrack a little. My husband and I are major cannabis advocates. We had discussed if any one of our children or ourselves were to ever get cancer, we would really like to use medical cannabis to treat not only the symptoms from chemotherapy but to help fight the cancer as well. As Delilah began her first round of treatment, we started researching. We watch a documentary called ‘Weed the People’ on Netflix and the cannabis pediatrician just happened to be out of California, so of course, we contacted her. After Delilah’s first round, we finally get an appointment with the cannabis doctor and Delilah became a medical cannabis patient at the age of 4. By this point, Delilah’s hair was pretty much almost gone so it was time for Mommy and Daddy’s hair to go as well.
I watched my husband shave my head. Washing off all the hair and feeling my head was the weirdest thing ever. I was so excited to show Delilah I went and woke her up to touch my head. She just smiled and rubbed it.
After consulting with Delilah’s cannabis pediatrician and getting her the right oil tinctures, she began her second round of chemo and I kid you not, her numbers dropped way down. We also changed her diet to cut out as much gluten and sugar as possible. She finally got down to about 10% involvement in the bone marrow. She was doing so well with cannabis, we wanted to see if we could fight it without harsh protocol that could cause more cancer in the future, not to mention all the long term side effects that don’t even appear until later in life. Her oncologist agreed to let us. About 6 weeks later, her numbers continued to drop. Her oncologist didn’t really even want to talk to us since what we were doing was working. We stopped treatment in May and in September, against all odds, Delilah started kindergarten. We had a big photo shoot before the first day. She was doing great and her numbers looked awesome.
We decided to switch hospitals for insurance reasons and we had been thinking of heading to Texas for a well-needed family break. We switched over to the Children’s Hospital of Los Angeles and in November, they decided Delilah had been doing so well and had been stable for about 6 months on cannabis tincture oils, they decide to remove her central line so she could enjoy her vacation. Everything went smoothly. The central line came out and we head to Texas for a well-needed vacation. We had such a nice relaxing time with family and friends when out of nowhere, she began limping again. We immediately thought of cancer. We went right back into FIGHT mode and contacted her oncologist. We took her to the hospital to get blood work and everything looked great. At home, she seemed to get worse. We aren’t new to this. We know the signs. We headed to CHLA with Delilah. They said she was still stable but she had tested positive for the flu. Now she couldn’t have any tests done for 2 weeks. After we waited for the flu to pass, we went in for scan after scan after scan.
Finally, our worst fear came true. Delilah’s cancer was starting to spread again. It was now at about 40% in the bone marrow. We needed to act quickly and get her started on the next phase of treatment ASAP. She got a double port placed this time so she can go swimming and take a full bath. She started chemotherapy and immunotherapy on the same day. We ramped up her cannabis because this treatment was supposed to be painful, but with the cannabis, she breezed right through. We have now just completed the fourth round of chemo with immunotherapy and her hair didn’t fall this time. Instead, it’s growing full and curlier than before. About a month ago, they performed a bone marrow biopsy and one of Delilah’s hips came back clear!
I’m not lying when I tell you this has been such a hard draining journey, but by the grace of God, he always pulls us through whatever situation we are in. He gives us strength and peace when we need it most and he is helping our daughter fight this beast. Delilah’s journey is far from over, but I know she will be healed one day soon and she will tell her story to so parents whose children are going through exactly what we are going through now.”
This story was submitted to Love What Matters by Samatha Loya from Los Angeles, CA. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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