Jan 12, 2017 Latest post:
Apr 28, 2019
Lydia is a sweet 4 year old little girl who has a twin sister. Lydia loves to dance, sing, color, swim, and watch Mickey Mouse, Sophia the First, and Disney movies like Frozen, Nemo, and Finding Dory. In May of 2016 when she was 2, Lydia started showing breathing problems. We had been working with my family doctor who caught her weak breathing on her left side of her lungs. He referred us to a pulmonologist back in August 2016 thinking this was an asthma related issue. We were going back and forth every month to do follow ups on how her "asthma" was doing, only to find out that the medication and breathing treatments were not working and we didn't know why.
That lead us to do some more testing, we did more xrays and a broncosophy. When the doctors told me it was going to take an hour and within 30 minutes I was being paged on my pager for a consult, I started thinking it was bad, but I never expect to be shown pictures and hear the words "we believe it is cancer". We did a CT scan with dye, lab work, took samples of the mass, and it was sent to an oncologist. Within 48 hours, I was getting a call from the specialist preparing me for the next words I didn't want to accept - she has stage 3 plueropulmonary blastoma cancer, also known as PPB which is a rare childhood lung disease and that we needed to be at St. Jude the next morning.
A team of doctors started working with her right away. Within 48 hours, Lydia's and my world completely changed. We started to accept that she had cancer, started making arrangements for benefits, day care for her sister, work arragements, and so much more. But then, a miracle happened. All the doctors thought she had a serious cancer based on all their tests. But, St. Jude in Memphis called 2 weeks later and we all couldnt beleive it, they were wrong because it mimicked something else!
After preparing for a life change, we got the best news ever, her tumor they took out turned out to be not cancerous, but acts like it, she has a rare tumor! It mimics the PPB they thought she had, instead she has an nflammatory myofibroblastic tumor. This is a non cancerous tumor, but carries cancer like characteristics which made the doctors believe it was. They were able to remove the tumor successfully, but has a 40% reoccurrence rate, so she will continue to have scans and every few months to make sure that it is not coming back. Treatment for this type of tumor results in surgeries like the one that she just had. They put a port inside of her chest because they thought she was going to need liquid chemo, so they removed it.
Unfortunately, in September of 2017, the tumor came back. Now Lydia is taking oral chemotherapy twice a day at home. This has caused many side effects such as pneumonia that has put her in the hospital several times, as well as nausea, and a weaker immune system. She continues to be strong and fights every day, and we are hoping to be off of it in October of 2018 after being on chemo for a year
Lydia and I will be updating this page together with journals, pictures, and success stories! Please keep my little girl close to your heart and pray for us as our worlds, including her sisters, and our closest friends and family have completely changed and we start this new journey together.