Blakely's Disney World Vacation Fund

Blakely was born on February 26th, only 3 weeks before her due date. She was a perfectly healthy baby minus some complications with jaundice. Within 2 weeks after birth, she was cleared of that diagnosis. Everything was perfect with her, until April 19th, at just 7 weeks and 4 days old. Who knew that day would change our lives forever? Blakely woke up that day very lathargic, vomiting a few times throughout the day. Being a new mom, I just thought she had the stomach bug. Later that day, as I tried to put Blakely down for a nap, she would cry out, which was not normal for her, so I checked her temperature. Her temp read 96.6 degrees. I thought to myself this isn’t normal. Am I doing this right? So I got a different thermometer, which read the same thing. As I sat there holding her close to me, I googled hypothermia in babies. It basically said to warm her up. So I wrapped her up in a blanket, turned up the heat, and held her close to my body thinking it just must be cold inside my house. About an hour later,  she woke up So I began to feed her except she started vomiting profusely. I called the pediatrician immediately, worried she was getting dehydrated. They suggested that I take her to LeBonheur’s emergency room. While I was on the phone with them she vomited again. I quickly changed our clothes, got in the car and rushed to the ER only to realize I was driving to the wrong LeBonheur. They still saw us at that ER thank goodness, because she had thrown up again on the way there. We got there at 5:30 pm. They ran a few blood tests, ultrasounds, xrays and even a spinal tap. They even had to put her under a heat lamp for her hypothermia. They said they weren’t sure what was wrong with her because all the other tests had come back negative. They told us they would need to admit her for further tests, but they would have to transfer her to LeBonheur Children’s Hospital because they don’t admit children overnight. While they were waiting for the transport ambulance, Blakely’s breathing became labored and they had to intubate her to help her breathe. Aroubd 1 am she was finally stable for transport. Once we got to LBCH, a large team of doctors, nurses, and other support staff were waiting for her and acted very quickly. They told us the only other options left to consider were a tumor or shaken baby syndrome/head injury, and that a CAT scan would need to be done. I was in disbelief that they thought something that horrific could be wrong with her. With a quick scan they could see her brain was hemorrhaging from a large tumor. By 3:30 am, their on call neurosurgeon, Dr. Boop, was sitting down with me and her father explaining that our daughter was very sick and may not survive the surgery or the day. That if she did, by some chance, they weren’t sure what her quality of life would be like afterwards. I refused to believe that after waiting 34 years for the greatest love of my life to be born, that I was going to lose her only after having her for 7 weeks and 5 days. That night, as I walked beside her down to surgery, I prayed harder than I had ever prayed before. As I waited for what felt like hours, with family in the waiting room, that call saying she made it through surgery was a uplifting feeling. It was feeling I will never forget. Just every emotion you can think of just overwhelms you and don’t know whether to cry, dance, or scream in joy. Later, the doctor told us that he didn’t get much of the tumor, he just had to stop because he was causing more bleeding. Not at all what you want to hear. Still in disbelief, they said they might be able to try again tomorrow. “What! My 7 week old baby has to go through two brain surgeries in 24 hours. This can’t be happening!” I just wanted to wake up from this nightmare. A new doctor, Dr. Klimo, was on-call for the second surgery. He claimed he was just as good as her first doctor. The next day, he felt she was strong enough for the second surgery. As they wheeled he back for her second surgery, all I could do was hold my breath and pray that she would be okay. They finally called after a couple of hours and said she made it through surgery. I was relieved, as was our entire family who had made it to the hospital waiting room to pray with us. Finally, I was able to breathe again. As the doctors motioned her father and I out of the waiting room to talk alone, I knew something was wrong. They said there was nothing more they could do for her. They asked us to consider putting her in comfort care, that the tumor looked bad. He said this time they were able to remove 50% more of it, but every time they did it bled more, and that surgery was no longer an option. I still remember the look on their faces as they told me. I was just happy she made it through surgery and now you’re basically telling me my daughter is dying. Unacceptable! They didn’t know the fight my daughter had. I had spent every day with her. I knew this was not it for her. They sent samples of the tumor to St. Jude. As Blakely laid in the NICU recovering from this horrific experience, so many prayers were given and answered. She started to get better. It still haunts me to this day, to think about every time one of the nurses or doctors would come in her room to check her pupils. The thought of them telling me she is brain dead makes me sick to my stomach. On April 27th, Blakely had to have another surgery to wash out some clots from the left side of her brain. A few days later, Dr. Gajjar from St. Jude walked into Blakely’s room, sat down with me and LBCH’s hospice team, looked me straight in the eyes and said I believe chemo is an option. I heard nothing else he said after that. I was just so thankful that he gave me the hope that nobody at LBCH could give me. On May 7th, Blakely got her drain removed and her shunt put in. By May 12th, Blakely was able to go home and I got the best Mother’s Day present ever. I was able to spend the day with my beautiful baby girl wires free. I didn’t want to ever let her go. I think held her the whole day. On May 14th, we made our first appearance at St. Jude. They were so kind to us. They showed us around and we began meeting all the people that would be in Blakely’s life for the next few months. The next day they put her to sleep and placed a Hickman line into her chest. Two days after that they did an MRI of her brain and spine as well as an auditory test. The following Tuesday she was receiving her first round of chemo at just 12 weeks old. Fast forward, to October 4th and she was receiving her 6th chemo treatment. She was one amazing trooper! After the MRI scan they told us they found no evidence of cancer. Chemo was done! Today, Blakely is still receiving physical, occupational, and speech therapy for her developmental delays. She returns to St, Jude on January 17th for a follow-up scan to see if the cancer is back. It just saddens me to think this is her life now, that Blakely will have to have these scans the rest of her life. I know how I feel in the days leading up to the scans, I can only imagine how she will feel the rest of her life actually being the one experiencing this traumatic ordeal. This is her life now. It’s just not fair! Please continue to pray for Blakely. She is a miracle! She is the sweetest, bravest, most lovable little girl anyone will ever meet! With this money, Blakely can have a magical Disney World Vacation.