Friday May 6, 2016
Kayleigh had been battling persistent allergies for about a month. In our part of the county spring time is rough! Her allergies seemed to be escalating into a sinus infection accompanied by a headache on and off everyday for a week. We also noticed her right eye was beginning to droop fairly significantly. So, Friday morning I called the peditrician’s office and we went in that afternoon. Sure enough, Kayleigh had a sinus infection on the right side of her head but her peditrician wasn’t convinced that was the cause of the head ache and eye drooping. We went home with antibiotics, 3 days of steroids, and instructions to come back Tuesday for a re-check.
Tuesday May 10, 2016
The antibiotics seemed to help the sinus infection and the steroids helped her breathing. She also didn’t have many headaches over the weekend but Tuesday morning she woke up with a headache that eventually induced vomiting. Her recheck appoint was scheduled for 3:30 but the doctor’s office called early and asked if we could come in earlier due to a scheduling conflict. We said yes and are so thankful we did! The headache, vomiting, drooping eye along with some other tests caused Dr. P enough worry to ask for an MRI right away. Looking back, this is where we can see God so clearly working on Kayleigh’s behalf. MRI’s require insurance clearance prior to being done and that usually takes time. We had clearance right after lunch the same day. MRI’s take time to schedule, we were told it probably wouldn’t be same day – we had the MRI scheduled for 3:15 the same day.
Kayleigh was an absolute trooper for the MRI. She didn’t cry a single tear when they did the IV. Her nurses were really great. She also stayed perfectly still through the entire 45 minute MRI even though it was loud and scary. We were told that if everything looked normal they would send the results to the doctor’s office in a couple of days but if there was anything they felt needed immediate attention they would call us that night. We loaded up and headed home at about 5:05 pm… My phone was ringing at 5:38 pm. Dr. P wouldn’t tell me what they thought they saw, just that he had preliminary reports and we needed to meet at his office first thing the following morning.
Needless to say it was a long night. We spent a great deal of time loving on Kayleigh, praying over her and crying when she finally fell asleep. I remember looking at Tim and saying “no matter what this is, we will be ok, and we will remember that God is good.”
Wednesday May 11, 2016
7:45 a.m. – We were at Dr. P’s office waiting for the doors to open. My mom, “Bess”, met us there to sit with Kayleigh while we spoke with the doctor. We were praying for good news but prepared for the worst. It was the worst. Kayleigh’s scans showed a 5.3 x 3.4 cm mass on her brain stem in the Ponds area of the brain. While we didn’t really understand what the meant we knew it wasn’t good. Dr. P and his partner in the practice said they felt St. Jude Children’s Research Hospital was the place to be for this but Dr. P was going to make some calls and make sure. He said he would call us as soon as he knew where we needed to go.
Amazingly, neither Tim nor I fell apart – Dr. P commented that we were taking this news better than he had expected. So I told Him what God had been reminding me of all night… “Kayleigh is our precious girl and we love her very much. But we know that as much as we love her, God loves her even more. We know he has a plan for her. So while we don’t know why He is asking us to walk this path we are going to choose to be faithful, no matter what He asks of us.” And while those words came with a few tears my heart was at peace. That doesn’t mean we weren’t still scared, we just knew who was in control. Before we brought Kayleigh in for the news our wonderful doctor knelt and prayed with us.
Dr. P did a great job with Kayleigh. He told her that she had something growing in her brain that didn’t belong there and that we needed to go see a special doctor about what to do. We left there with so many unknowns but God gave us direction quickly.
10:30 am – Dr. P calls to tell me he has spoken to the doctor at the St. Jude affiliate in Huntsville and they want us to come in right away. We don’t have a specific appointment time, they will just see us whenever we can get there. We were also told to go packed and prepared to head straight to Memphis.
While Kayleigh is obviously the center of all this we do have two older children and we couldn’t just leave and not let them know anything. So I stopped by both of their schools and let them know that the doctor’s found something on Kayleigh’s scan and that we needed to go see another doctor about what to do for it.
12:00 p.m. – we’re packed and on the road headed to Huntsville. Even though we arrived in the middle of lunch the doctor saw us right away. This is where we had our first encounter with Child Life. Mr. E was awesome! He talked with Kayleigh and helped her digest the word tumor and kept her playing while Tim & I spoke with Dr. S.
Dr. S tells us a little more about the tumor that Kayleigh has and the location. Her words are that it is in an area of “high value real estate”. It is the kind of place where operating is it an option because it is just too risky. Often times they will not even do a biopsy because it isn’t worth the risk. The good news was that Kayleigh didn’t have any fluid on her brain, so while the tumor was large it wasn’t putting her in immediate danger. She did not need to be taken to St. Jude by ambulance or Med Flight we could drive her to Memphis ourselves.
We left Huntsville at 3:15, stopped to meet my parents and kids for a quick bite at 4:30 and pulled in to St. Jude at 8:00 pm
8:00 p.m. – even though all the clinics were closed we had folks waiting for us at St. Jude. We got in, registered and met with the on call physician that made sure Kayleigh was stable enough to stay with us on campus but not actually in the hospital. Thankfully she checked out well and we were escorted to Tri Delta Place on St. Jude’s campus.
11:00 p.m. – we are checked in and out pizza arrives! We have a picnic on the beds and crash. 12 hours. That’s how long it was between when we heard the news and when we checked in at St. Jude. It is quite obvious that the Lord cleared a path for us. We are thankful for God’s peace and his provision! This page will help keep everyone up to date with what is going on in our lives.
To continue reading Kayleigh’s Story in order Click HERE to be taken to the May 12, 2016 blog entry. From there, just click the tab that says “next post” at the bottom.
Thank you for your love and support – it is so greatly appreciated