A little over a year ago, I shared a nutshell of our story involving Baxter’s medical roller coaster. I’m finally sitting down to write an update! But before I pick up from where I left off, I’m going to go way out of my comfort zone and share a bit of my own medical roller coaster.
In my last post I mentioned how our family went to a support group meeting for families having children with Osteogenesis Imperfecta. Baxter was about 8 months old at the time and I was very stressed out with constantly taking him to different appointments and learning more about this rare disease I thought we were dealing with. It was the night before the support meeting that we were traveling to Tampa, FL for and I remember having a horrible headache. I remember describing it to my husband as a stress headache that felt like it was behind my eye. The next morning as we traveled out of town for the meeting, my headache was gone but my vision in my right eye was blurry. I thought it was strange but tried to ignore it and carry on with the day. Putting on a smile and meeting lots of new people all the while feeling kinda crazy because my vision was slowly slipping away was how I spent the day! Like most mothers I put the focus on my children first and ignore my own problems.
The next day I went into the doctor. She looked at my eyes said they looked fine and gave me a prescription for migraine headaches. The doctor explained how sometimes migraines can cause vision issues and to see if the medication helped. Well, I thought this was stupid. I didn’t have a headache anymore, just couldn’t see out of my right eye. I didn’t take the pills. The next day I went to the eye doctor. They looked at my eye and said everything looked normal and that maybe it was caused by headaches. Then they gave me the same story about how migraines can cause temporary vision problems. I left angry. I couldn’t see in one eye and I didn’t have a headache! I felt like no one was listening to me. The next day I went back to the eye doctor, I demanded they check my eye more. They did more tests and still sent me home saying everything was normal. Now I was beyond angry! My eye was not normal! I couldn’t see!!
I went back to the eye doctor a third time that week. I couldn’t get an appointment that day so they said they would try to fit me in. I sat in the waiting room in tears until all the other patients had been seen. Finally they saw me. It was the end of a long day and I could tell they wanted me out fast. I think by this point they thought I was totally nuts! A doctor that I hadn’t seen before came in and looked in my eye with whatever light blinding instrument doctors use. He immediately called in the other doctor that had seen me that week and had him look at what he saw. My optic nerve was swollen. I wasn’t crazy after all! They told me I needed to go first thing in the morning for an MRI. The next day shortly after my MRI I got a phone call from a doctor that told me the scan showed that I had optic neuritis. He said that they were preparing a room for me at the hospital and that I need to go in as soon as possible to get started on IV steroids.
The doctor casually mentioned that the MRI also showed that I had some plaques on my brain. Before hanging up, I asked what that would mean and what caused the optic neuritis. He was quick to not answer my questions saying that another doctor would talk to me about it when I get to the hospital. Having my own doctor at home, I turned to my husband and told him that I had optic neuritis and plaques on my brain. “What does that mean?” I asked him. He immediately started crying. Well, this didn’t seem good! He told me that I probably had MS and continued crying. Some how I wasn’t moved. I wasn’t upset. If anything I was relieved that they finally found what was wrong with my eye and were going to treat it! I called my mother to come stay with the kids and I went into the hospital for 5 days of IV drugs and lots of testing!
Several days later I met with a neurologist that gave me the diagnosis of MS. I had baby Baxter with me in the doctors office and was trying to keep him from crying. I had already expected the news and again wasn’t really moved. I remember the doctor kind of looked at me like I didn’t hear him. He made sure I had his attention and not my babies for a second and repeated himself. I looked at him with a smile on my face and just thought “okay! I’ve got this!”. Not his usual response to diagnosing someone with a progressive debilitating disease! Having a child with medical problems and practically living in doctors offices and hearing bad news before had prepared me for this moment all too well. I really didn’t let it phase me. I felt fine, I was getting my vision back slowly but surely and I was fine. I remember calling my brother to tell him my diagnoses and he said “what exactly is MS? I just did a run for it but not really sure what it is!”. Funny but I didn’t really know either. My husband explained the basics of it to me, that its my immune system attacking my brain. My nervous system was being attacked. Multiple Sclerosis refers to the multiple scars left on the brain after these “attacks”. The scars don’t go away and leave permanent damage.
This was really all I needed to know at the time and all I wanted to know. I didn’t google it! I didn’t want to know anything else about it! I had learned from looking up everything I could about Baxter’s possible condition that all that does is scare you. I didn’t want to know what could happen to me in the future. I didn’t want to read about anyone else with MS or meet anyone else with MS. I just wanted to take it day by day and only deal with what came at that time. Not worry about the future. Over the past few years now, I have slowly educated myself on the disease that I live with. It has definitely taken some time to get comfortable enough to learn about it. It was probably almost a year until I actually googled it. I have now read many stories about and meet a few people that share my diagnosis. Its a tough one. I have been on half a dozen medications, become an expert at giving myself shots (both subcutaneous and intramuscular), been hospitalized and had more MRIs now than I can count!! Its rough. I have been at the top of my game running two miles a day and killing it with yoga and I have been at rock bottom hardly able to make it out of bed feeling like my body is stuck in slow motion with this disease. There is not a day that goes by that I am not struggling with some sort of horrible symptom that I wish would go away. Most of the time I just keep my head up, try to ignore it and get on with life.
Baxter! So, about a year ago we finally got in touch with a pediatric ophthalmologist that offered to see us in hopes that she could help Baxter. We took a vacation and travel to Kansas City, MO for an appointment that Baxter freaked out during and didn’t even let her see his eyes. She told us about a cross linking procedure that is done on patients with severe thinning of the cornea that helps strengthen their corneas. Its a procedure that is not FDA approved in the US but she would be willing to do it! We talked a lot with her about this option there at the appointment and even after over the phone. Later after some testing we found out that Baxter’s corneas are too thin for the procedure and that our baby Apollonia’s corneas are even thinner. It was heart breaking. The only procedure available to possibly help was now not an option. This doctor told us not to give up hope and urged us to see a doctor either in Switzerland or Canada. Both of these doctors had experience with cross linking and had done it with children very similar to mine. They had ways to do it on very thin corneas. We packed up several weeks later and went to Canada. This doctor performed a couple of tests and agreed that Baxter’s eyes were too thin for it to work. He suggested that instead we perform a surgery that would place a doughnut shape donor cornea on top of his existing eye and after that heals perform another cornea transplant.
This sounded horrible! Two painful surgeries and after all that the doctor wasn’t even very optimistic that he could save his vision. I left this appointment feeling extremely defeated. So, the cross linking was definitely not an option now and more surgeries that may or may not work is all we have left. If surgery is our only option then I’m not traveling to Canada for it and I’m not going to have a doctor perform it that is not totally confident! We came home and told our local doctor about our current option. She searched for a surgeon that would be willing to help us and had experience with brittle cornea syndrome.
It wasn’t easy but we finally found a doctor in Pittsburgh, PA. We have traveled to see him twice now. He is great with Baxter and as optimistic as you can be with such a devastating disease. I am taking Baxter next week for a surgery in his right eye that will hopefully restore some of his vision. This doctor has performed surgeries on other children with brittle cornea syndrome and is very familiar with the disease. I am not looking forward to this trip but I know its just one more step in this journey and hopefully a successful one! I know that my children have many appointments, test and surgeries in their future and its hard but we do it. We do it so that they can have sight as long as possible in their life. We do it so that more doctors can learn from them and help other children in the future. This is a disease that hardly any doctors in America have ever even seen and I have two cases in my house! Its a disease that we are handling the best we can and won’t stop for our kids and other kids around for the worlds sake.
And then there’s this… Somewhere between Kansas City and Canada I was admitted to the hospital for MS symptoms. I was put on IV steroids and had an MRI (the usual). A couple of weeks later I got a call from my neurologist who said that something showed up on my MRI that needed to be looked at further by a neurosurgeon. Confused, I went in for further imaging and then to see the neurosurgeon. He told he that I had to have a biopsy taken from a small growth in my head to make sure it wasn’t cancer. Great! Schedule the surgery, get it over with! I AGAIN wasn’t really bothered. Had the surgery and it came back cancer. I had a rare form of cancer called a chordoma at the base of my scull on my clivus bone. This was a bit of a life rattle! I of course hope for the best but your mind often goes to the worse. It was hard to think of my family without me. My oldest son asked me one day if it was okay to tell someone that I had cancer. I said “YES! Tell everyone, because I’m going to be fine!”. So many people have sad stories when it comes to cancer and that was not going to be mine! When I went back for my second surgery to remove the chordoma, the doctors came in and asked if I was okay. “I’m fine!” I told them, “My 6 year old has been in surgery 16 times. If he can do it, I can do it!”. Little Baxter gave me all my courage!
The surgery and recovery were horrible but I did it. I was told that the best treatment for this kind of cancer was proton therapy rather than chemo or radiation, so thats what I did. The closest proton therapy center to me was two and a half hours away and I had to go to treatment every day for 8 weeks. No problem! I hired a nanny and made the drive to save my life, 5 hours a day in the car. I was told that 2 weeks into treatment I would start to have fatigue pretty badly (I already have chronic fatigue from MS, so no big deal!). I told a friend that I may need help with driving and in no time I had a line up of drivers for six weeks. People really are amazing! I had someone drive me every day for 6 weeks! I love my friends!! I can remember the first appointment that I saw a bell in the office for cancer survivors to ring when they are cancer free. I walked past it kind of scared and hoped that I would never get that diagnosis and have to ring the bell. On my last day of treatment when all the staff surrounded me cheering and it was my day to ring the bell it felt awesome to know that this is behind me now. One more thing I can add to my accomplishments!
One of many things I have learned from all of this is that everything happens for a reason. I might not know what that reason is now but He has a plan and I trust it! If it weren’t for Baxter having health issues before me I probably would have freaked out upon hearing that I have MS. If I hadn’t been there by Baxter’s side watching him be put under for surgeries I would have been terrified when I had to do it myself. I don’t “share” a lot of this personal health stuff because I hate when people feel bad for me. I’ve got it good, folks! I am too blessed to be stressed! I am probably the strongest person I know. Don’t read this and feel bad. I am a very happy, optimistic and humble person. My daughter just shouted out from the next room that she would describe me as “Too legit too quit!” I couldn’t have said it better, Maggie. I have to give props to the Lord Jesus Christ who gives me strength every day! I would not be able to make it through any of this if it were not for Him. My faith holds me up always! As hard as it may be for me to share this stuff, I’m going to continue (even if its once a year!) in hopes of giving strength to someone else when they might need it. I want more people to know about blindness and how it effects families, how people with MS are stronger than you know, and how cancer is totally doable!