Childhood Cancer Awareness Month has come and gone for most people. For those of us in the middle of the fight, it is more than just a month. It doesn’t stop when the leaves start to fall. When we first thought about starting all this up, we really wanted to make things easier for kids and their parents that have to go through this. Wylie had several struggles and setbacks. There were several moments when we were at a loss on how to move forward or fix a problem. Because childhood cancer isn’t something often discussed or even familiar to most, it is difficult to find guidance. We all are often reliant on those going through the journey at the same time. As we grow, we want to make this a place where families can come to see they are not alone in this. We hope that the packages we send not only bring a smile to the kids who receive them but that their families can receive the support and affirmation they need.

This month, we were a little behind on getting everything going. For that, we apologize to everyone including Kehlani and her parents. Even though we may not have the website updated or the newsletter sent out, we make sure that the children we are spotlighting receive their package. Kehlani received her package last week and was surprised. We were told that she loves Elsa and may have gone a little overboard, but she deserves every bit of it. We did not plan this, but our October spotlight also had a recent birthday on October 7th. Birthdays are even more special to these families. We were also informed that our November spotlight has a birthday coming up as well. Without delay, we would like to share Kehlani’s story as told by her mother, Ashley.

Kehlani is a very spunky bright 2-year-old. On her second birthday last year in October, she just wasn’t herself, very grumpy only wanting me to hold onto her.  The very next day she woke up with a fever and wouldn’t get up out of bed or walk at all for that matter. We thought she just had a little cold, so we gave her Motrin that day and just kept an eye on her temperature.  As the days went on the symptoms got worse.  We took her to all the hospitals around our hometown with no answers, or little answers like an ear infection or pinched nerve but her father and I just knew it was something more.  A month went by of her just laying around all day long, fevers all the time, Motrin took them down for a bit but once worn off it was right back!  She wasn’t eating barley or drinking.  If she did try, it all came back up.  She was barley using the bathroom.  So, I called her pediatrician and asked to be referred to Children’s National in D.C.  They did so we got in and saw the Infectious Disease team.  Given all her symptoms and not having any type of answers, they automatically said it would be best to get an MRI.  The day of the scans, they took her back, and she was back there for about 30 minutes.  They came out and got us and took us into this small conference room.  She told us that she had small tumors everywhere in her body and the main solid tumor was in her stomach wrapped around arteries.  They immediately got us ready for a biopsy.  It came back as High-Risk Neuroblastoma stage 4.  We immediately started high dose induction chemo.  After the first 2 rounds, I immediately began to see her personality coming back.  She was up trying to walk.  Everything was turning around.  We have been going back and forth to DC for treatment.  Her father has lost his job from being the main one doing the inpatients.  While I’m juggling working and taking care of our 4-year-old son getting him back and forth to school and our 11-month-old.  Bone marrow transplant has had to be the hardest thing for her.  She was bed bound for a little over a month.  Her appetite was gone.  The Mucositis took her appetite away so she was on straight tube feedings, which would make her sick and throw up.  She wasn’t walking up there so once she did get discharged, we had to teach her to walk again.  She was back down to 19 lbs once discharged.  One thing that I would tell a family looking from the outside in is that it is definitely harder than it looks, but our children show us how strong they actually are, stronger than any other person.  The most positive experience in this journey is watching her come out on top of all the treatment, even though it knocks her down she always makes her way on top with a huge smile.

Kehlani has a Facebook page set up if you would like to follow along in her journey, Fighting for Kehlani