Hi, my name is Alaina, but everyone calls me Boogie and here's my story!
Boogie was born October 29th, 2022. She was a healthy 8 1/2 lb. chunky beautiful Babygirl. You know...the kind you just want to squeeze. Well, that was her. She was everything we ever prayed for and more! Life was perfect.
When Boogie was about three months old, I noticed underneath her right eye started to look black and blue. It was puffy as well. I pointed it out to her father and her agreed something wasn't normal. We took her into the pediatrician right away. We were told it was a clogged tear duck and nothing to concerning. They gave us some medicine and said to call in a week if nothing is better. Well, the week went by, and her eye was worse. It was beginning to look lopsided. This time when we took her in to see the pediatrician, we were told we have to see an eye specialist. The appointment was made for the following week.
We travel to Baltimore to see the specialist and several doctors look at her while we're there. They tell us that she needs an MRI. They believe it was a hemangioma, but the MRI would confirm it. The problem we were facing is that she was so young she needed to be sedated for the MRI. While the doctors worked on getting a hospital to do the MRI Boogie got to pick out a cute pair of pink glasses.
Fast forward (March) the MRI did confirm it was in fact hemangioma. It was great news because it was an easy fix. The doctor prescribe medicine, and we followed up for next few months. Although something in my gut told me to ask for another MRI and when I did the doctors didn't feel it was necessary because she was doing so well.
Boogie's always been such a happy baby. She never really cried or even wined. Mid July I noticed she seem moody BUT she's teething so that's normal. Weeks slowly past and she starts vomiting so I take her back to the pediatrician. "It's a virus" So I give it a week and she's still not better. Still vomiting and I noticed her left eye started turning inward. I took her back and yet again I was told it was a virus and to make sure she's wearing her glasses. Now we're on week three and my poor baby was still vomiting I also noticed her soft spot was gone. I could tell in my bones something was really wrong, but I didn't know what. I told my husband I was taking her to the hospital.
We spent 4 LONG days at our local hospital a specialist came down from DC. She was a brain cancer doctor, and she sat down and was making a list of what didn't make sense. The other doctors wanted to send us home with a protein allergy, but we demanded answers. Alaina's heart rate was only 50 beats per min. All she did was sleep. If she was awake, she was vomiting or crying. We needed answers and fast. So, when that doctor came in and said she specializes and brain cancer I knew something wasn't right. She requested a scan of Boogies head. It indeed showed a tumor. But the tumor wasn't just a tumor. This tumor was the size of an orange. We immediately flew to CHKD.
Our flight only lasted I believe about 45 minutes, but it felt like a lifetime. My daughter was laying there almost lifeless and there wasn't a thing I could do but sit there. When we arrived, we were met by a team of doctors and nurses and when I say team I mean about 20 people. They all wanted to know what exactly went on in the last month. I remember feeling extremely overwhelmed, but I had hope someone there would save my baby. Once everyone finished their notes I was met by her surgeon. He immediately asked me how long she was twitching. I informed him 4 WEEKS! He requests Ativan because she was having seizures. I expressed to him the pediatrician and local hospital stated she had chills! I was furious. My Babygirl was suffering for 4 weeks. I know right then we were where we needed to be.
The surgeon took her back for another MRI just to confirm the tumor and the fluid on her brain. They immediately took her back to place a shunt on the left side to relieve the pressure. Alaina's heart rate immediately came back up to the 90s. After the surgery she recovered the next day and the following day they went back in to get a biopsy of the tumor. The results could take about 2-3 weeks to come back. The doctors were very honest and upfront about everything. They weren't sure about how much time we have with our little girl. They were surprised she even made it through the first night. So, with that being said, we took it day by day. We cherish every single day. The results came back as grade 3 supratentorial ependymoma.
Alaina's major surgery was September 22, and she did amazing! The surgeon was beside himself. He stated this was nothing short of a miracle and a case he'll remember
the rest of his life. He was able to remove the whole tumor but, in the process, he did have to remove the right temple lobe due to it being so smashed from the tumor. We had to take the next couple weeks to checks the effects of the surgery. We were worried about Boogie's movement on the left side. only time would tell.
Weeks went on and Alaina made progress every day until the seizures set in. The problem was she was having silent seizures and seizures while she was sleeping. At one point in time, she was having about 200 a day. The doctors worked endlessly trying to find the right medication. After about two weeks they came up with two medications that did the job. Not long after that we were able to visit home for Alaina's first birthday and to celebrate Halloween.
Nov 2 we were off to DC to do proton radiation. Alaina completed 30 rounds, and she rang the bell!
Alaina goes every 3 months for an MRI with and without contrast. There are currently no signs of a tumor, but we do see effects from the radiation. Looking at her she's a thriving almost two-year-old. She's running around talking, playing, and just living the best life. Alaina brings life everywhere she goes. She has a long way to go before the doctors dismiss her because ependymoma is so aggressive.
