Alexis' Story

Alexis has always been such an active little girl. She started doing competition cheerleading and playing softball when she was 4 years old. My husband, Scottie, was in the Marine Corps at the time so we lived in North Carolina. We have always been an "outside" kind of family. If Lex wasn't playing softball or cheering, we were fishing, hiking, at the beach or a park - anything that had to do with being outside.

Alexis is the oldest of three girls. She is the most amazing big sister there is. Not only for her sisters, but for me also. She has always taken such pride in helping me since the day she became a big sister 3 years ago. When our second daughter, Kaelynn, was born Alexis used to say she was scared of becoming a big sister because she didn't think she would be good at it. We assured her she would and she got the hang of it right away. In August 2011 Alexis became a big sister again to our third daughter, Makenzie. This time she wasn't scared or nervous about having a baby around - she was excited. She knew she had this "big sister" thing down pat. Once again Alexis was such a big help. She makes things like taking a shower easier on me. There are times she will sit in the bathroom and play with Makenzie while I'm showering so I'm not rushing to get out. Kaelynn and Makenzie are so lucky to have Alexis as their big sister.

While we lived in North Carolina Alexis was always an exceptional student. She went to school there from kindergarten through 2nd grade. The summer after 2nd grade we moved back to New Jersey and Lex got to join her friends from preschool in 3rd grade. It didn't take long for Alexis to get used to the move. She fit right back in with her friends - all while making new ones too. Cheerleading started the summer before 3rd grade, which helped her feel more comfortable about starting a new school that fall. We knew the NJ school system was going to be a lot different from North Carolina's. Scottie and I often said we were curious to see what level Alexis was going to be on compared to the kids here. We hoped and prayed she wasn't going to struggle or be behind schedule according to NJ's standards. Alexis blew us out of the water though. Out of 4 marking periods in her 3rd grade year, she got 3 B's - the rest being A's. The last 2 marking periods Alexis got straight A's. Scottie and I couldn't be more proud of her. She did just fine with the school adjustment - both socially and academically.

During her 3rd grade school year, Alexis signed up to play softball for the rec league here in town. One of her coaches saw her love for the game and realized she had a lot of potential. She asked my husband and I if Alexis would be interested in joining the town's traveling team. I already knew this was something Alexis wanted to do more than anything. She couldn't wait for the next year to come so she could try out for that team - thinking it was too late to join the current year. After talking to the head coach and director, they said they would love to have Alexis on the team. I will never forget the day Scottie and I said to Alexis "Would you want to play on the Angels THIS year?". She said to us with a HUGE smile on her face "Do you even have to ask me that?!". The team took Alexis in with open arms. Everyone from the coaches, to other girls and their parents were so kind to all of us. It was then that we realized it wasn't a team - this was a family. Although Alexis loves cheering - she gets a completely different kind satisfaction when it comes to playing softball. It's where her heart is.

For Alexis, the first year moving back to New Jersey was exciting, busy and filled with tons of fun.

The summer after 3rd grade was like any normal summer. It was filled with lots of softball followed up by the beginning of the cheerleading season. We had no idea what that September was going to bring us - especially Alexis.

I remember this day like it was yesterday. I woke Alexis up one morning to get ready for school. She's not the easiest to wake up, but after saying it enough times she woke up. She stepped out of bed - and fell right down to the floor. She was painfully crying, saying she couldn't get back up. I helped her stand up and get back up on the bed. She was complaining of her legs hurting her. Alexis had an unexplained problem with her legs when she was about 3-6 years old, but she explained this as being "different". I pulled her pant legs up and the second I saw her knees I knew she wasn't kidding. They were huge - both of them. Swollen so badly that they didn't even look like knees anymore. I knew it couldn't have been an injury from cheerleading because it was both legs.

I kept Alexis home from school and called the doctor as soon as they opened. We brought her in and the doctor said the same thing that I said - about it not being an injury. She asked us a bunch of other questions too and it was at that time that I really started to piece things together. For a couple weeks before this day Alexis had been complaining of other joint pain too - her wrist, elbow, ankle, ect. I realized it was usually always on the left side. Alexis also frequently got headaches. I never thought anything of it when it was happening but when the doctor asked about it I realized it was more often than normal. Alexis was also very tired all the time - which was not like her. I used to think she was just going through a phase. I never put everything together. I wish I did, at least a little sooner.

The doctor ordered for Alexis to get blood work done. She tested Lex for many different things. A couple days later she called me with the results (this is another day I will never forget). Alexis' blood work came back positive for Lyme Disease and Rheumatoid Arthritis. I remember being on the phone with the doctor for a long time - I was taking notes as she filled me up with information. There was no doubt that this was a false positive - Alexis was positive for 13 out of 13 bands (I will explain this further in another post). Since we had no way of knowing what stage the Lyme Disease was in we started with a 4 week dose of the antibiotic - doxycycline - and prayed that it cured her.

After the 4 weeks of antibiotics, Alexis made some improvement. The symptoms didn't seem to be as bad but it didn't stay like that for long. When I noticed the symtoms didn't completely go away I called her doctor and asked them if they wanted to see her again. They said that sometimes the symptoms will linger, and that I should give it a little bit of time. I waited and waited and waited. Before we knew it the symptoms were back in full force and worse than in the beginning.

Not only was Alexis experiencing the physical symptoms, she was also dealing with many of the neurological symptoms too. School was not coming so naturally to her anymore. Homework was taking hours to complete, tests were a big struggle no matter how much she studied and reading seemed almost impossible. Every time she would read for more than 10 minutes she would get a migraine headache. Not only is it causing her pain, she also just can't comprehend or remember the things she reads. She had a book report to do just a couple weeks ago. She had to read a book then do a project about the book. When she finished the book and was beginning to work on the project, I asked her what the book was about so I could help her with it. She couldn't tell me. She had no idea what this book was about - a book she just spent 2 weeks reading. Now we were only days away from the project being due and she couldn't do anything. Scottie and I had to re-read the book with her - listening to it as she read it to us out loud and stopping her after every chapter to summarize what she just read.

It kills me to see Alexis struggling with something that was always so simple to her. She went from loving school to dreading it every day. Her grades have dropped from the beginning of the year to now - but I told her that those grades mean absolutely nothing to me. I can see how hard she tries and all the effort she puts into her school work. That's all that matters to me. When I say her grades dropped - I mean that she got 3 B's this past marking period. She beat herself up about those 3 B's though. To me - having those 3 B's and the rest A's makes me more proud than the times she did get straight A's, because I know the effort she is putting in to get those grades.

I brought Alexis back to her pediatrician. After deciding that it was still the lyme disease doing this to her, the doctor started to explain to me that the next step was going to be a little complicated. There is a big controversy going on between Infectious Disease Doctors (ID doctors) and Lyme Literate Doctors (LLMDs). I will explain this in further detail in the future also. Scottie and I had to decide what we should do next because the ID doctor and the LLMDs treat lyme disease differently. The problem is that insurance companies do not cover LLMDs. So after lots of thinking, we decided we were going to start with an infectious disease doctor, but keeping an mind open about going to an LLMD if at any point we felt that would benefit Alexis more.

We got Alexis an appointment with an infectious disease doctor. We'll call him Dr S. Our first appointment was very thorough - almost lasting a full 2 hours. Dr S stated that normally the 4 weeks of oral antibiotics is enough to beat this disease and that he isn't sure it's the lyme disease causing all of this. To be sure he wanted her to get more blood work done and to see a pediatric neurologist. The one he recommended to me wasn't taking new patients at the time. So I called 6 other places within a 2 hour radius of us. The earliest I could get Alexis seen was in 5 months! Some places didn't have open appointments for the next 9 months! I thought that was outrageous. Who would have thought it would be such a long wait to see a pediatric neurologist. I knew we didn't have that kind of time because Alexis' treatment was depending on a neurologist's input. After talking to Dr S back and forth for a week straight trying to get Alexis an appointment, he was finally able to pull some strings and get her in with the original one he recommended.

This appointment was for just a couple days later. We'll call him Dr T. At this appointment, Dr T said he is sure it is the lyme disease doing this to Alexis and that his role was going to be to figure out how much of it has affected her neurologically. He ordered for her to have a spinal tap and an MRI done. This spinal tap would be done by Dr T at the end of that same week. The results from this would help Dr S determine a treatment plan for Alexis. The day of the spinal tap was a scary one for Alexis. She hated the idea of getting an IV and really hated the idea of being put to sleep. She made it through all of it. She made us so proud. This was the day I started to realize how brave my little girl really is.

The following week Dr S called with the results. He said he is sure it is the lyme disease doing this to Alexis. He also filled me in on the treatment plan. Alexis was to have a PICC line inserted and be treated with IV antibiotics for 4 weeks. That brings us to where we are now. Alexis' PICC line was put in on April 20, 2012. As of today she is on day 13 of her treatment. The treatment is going okay. She is on a high dose of ceftriaxone, also known as rocephin. Now she is dealing with the affects of the lyme disease along with the affects from the antibiotics. All while adjusting to having a PICC line in her arm. No 9 year old girl should have to experience anything like this.

Through all of this one thing has always stood out - just how strong Alexis really is. She doesn't ever complain or question why this has happened to her (which I am guilty of doing). The way she has handled all of this just amazes me. I have never met such a tough little girl in my entire life. I am so proud of her and I really just can't wait for this fight to be over with so she can live like a little girl again.