Day 16 of Guest Blogging for TSC Awareness
By guest blogger Renee Seiling (Westbury, New York)
My husband and I married in 2007 after dating for over six years. We always planned to try and start a family in September 2008, and we did get pregnant that month. But we never planned for our daughter to be born with an incurable disease.
May 15, 2009 we heard devastating news; they found rhabdomyomas on our unborn daughter when we were 35 weeks pregnant. That is when we first heard the words tuberous sclerosis. I remember crying at home that night and my husband said to me “She can feel everything from you. You are stronger than this and she is going to get her strength from you, so no tears, so she’s as tough as you are.” He was right, so I started doing research, met with genetics doctors, cardiologists and had sonograms every 3 days to check on her. They induced our pregnancy three weeks early and admitted her to the NICU.
It was so hard to not have your baby in the room with you and having to go down to the NICU for feedings and for the doctor’s rounds. But the hardest was watching the days when babies were not well and they would be crashing right before your eyes. I did not know any of the moms there, but we all felt for each other. Seeing babies that have lived there for four months made you realize that you did not have it so bad.
When she was 4 days old a brain MRI confirmed TSC. Zoey was born with countless tubers on her brain and a subependymal giant astrocytoma (SEGA) as well. We were told by her neurosurgeon that it is the second largest SEGA he has ever seen, lucky us. Fortunately we were also told that if it ever grew it is operable. Zoey had blood work to find the strand of TSC she might have and at 8 weeks old it was confirmed she has TSC-2.
We had Zoey start early intervention when she was 4 months old, one of the greatest decisions we ever made. She was granted physical therapy, and we met Sonny. Sonny was Zoey’s first best friend. He came to our home 3 times a week, and Zoey just loved him. He helped us through all of the hard times. He was there for her no matter what. When we moved from Queens, NY to Long Island, he even followed us. He made sure he found a company that also worked with Long Island early intervention so he could stay with her. He was with us for 3 years, and I cried on his last day. He will always be remembered.
Zoey also had speech therapy and occupational therapy at home three times a week. We met Hadiah, a no nonsense OT who always made Zoey work harder and still have fun, and Kelly, her speech therapist ,with whom Zoey fell in love with immediately. Her bubbly personality helped Zoey sit through her 45 minute sessions.
Zoey is developmentally delayed; she has been going to school since she was 2. Zoey has a team of therapists and teachers that have helped tremendously. Zoey can wave hello and goodbye, blow me a kiss, give high fives, climb stairs, run, jump and loves spinning to get herself dizzy. These are simple gestures that I thought she was never going to be able to accomplish. While she is non-verbal, we always have hope that one day she might find her voice.
Zoey has been through more in her four years of existence than most go through in a lifetime. When she was 6 ½ months old she started having infantile spasms, I remember calling the on-call pediatrician because it was a Sunday, and she told me, oh she’s probably just teething. Zoey would cry, and when she stopped, her arms would go above her head and her eyes would roll to the back of her head while her legs crunched up. I knew it was not teething, so I called her everytime she had a spasm and had an EEG appointment made in two days.
Zoey spent her first Christmas Eve in the hospital and started a steroid, ACTH. I had to give her an injection every morning in her thigh. I remember the first time I had to do it at home. My dad came over to help me and hold her leg because I was so scared she was going to move. Lets face it, this steroid was a nightmare. All she wanted to do was eat, sleep and poop. But thankfully, because of the TS alliance, I was able to make contact with a fellow TSC mom, Cindy. She helped me get an appointment with a new neurologist, Dr. Orrin Devinsky, at NYU. He wanted her to start Sabril immediately. I am not even sure if Cindy remembers helping us, or if I ever thanked her enough because with Sabril, Zoey’s spasms stopped after the first dose and she still has to take this medication twice a day.
Zoey’s development had worsened after the spasms. She had a difficult time trying to crawl because she had gained five pounds in three weeks from the steroid, but Sonny, our superhero helped her. She was crawling at 9 months and started walking at 15 months old.
Then when she was 17 months old, Zoey vomited and turned blue. She was rushed to the hospital, where countless medications were given to her, and even a defibrillator was used on her. I thought we were going to lose our little girl. Once they put a central line in her thigh, the medication finally stabilized her after two hours, the longest two hours of our lives. They diagnosed her with Wolf Parkinson’s White, an extra electric charge in your heart causing dysrhthmia. Zoey spent eight days in the hospital trying to find the right dose and right kind of medication to help keep her heart beat at a normal rate. She takes flecainide and amiodarone still, just to maintain her rhythm. We spent Thanksgiving in Columbian Presbyterian Hospital that year, and you know you’re supported when your sisters and brother-in-law show up with Thanksgiving dinner, crockpots and all. We ate a very thankful meal that year for having our Zoey with us.
Well wouldn’t you know it, two days after she was released, Zoey was unresponsive again; we assume it’s her heart and call 911. She gets to the hospital, and it’s now seizures… hospitalized again, and prescribed Keppra. Well that month of December 2010 proved to be a crazy one. I stayed with my parents because they live so close to the hospital. That was a good decision because she had a seizure every 2 weeks that she could not get out of; she was hospitalized a total of eight days in December, including New Year’s Eve.
Some years are good, and some are bad. Last year, 2012, Zoey had some rough seizures. Zoey never gets out of her seizures. She always needs diastat, an emergency seizure medication, to stop the seizure. But then she has shallow breathing so she needs to be intubated…that happened six times last year. Most of Zoey’s seizures have been febrile as her immune system is slightly weakened, since she is on a newly FDA approved drug called Afinitior, a chemotherapeutic drug. Afinitor is prescribed to try and shrink a TSC person’s SEGA. Zoey’s SEGA has shrunk and is now stable. Her doctor said that she still might need brain surgery one day because of how large her SEGA is, but for now, thanks to the medication, she does not need to have any surgeries. We also had her start a vitamin, probiotic, and that seems to help her fight off any illnesses she might receive.
While my husband and I never planned to have a special needs child, we do. Now we just try to keep our sense of humor about everything, and realize she is the strongest person we both know. I mean when you get a needle stuck in your arm to take blood for the umpteenth time, and you just look at it, and then just start playing with your iPad like the needle is not there, that’s pretty amazing for any child.
Zoey is also one of the happiest kids you would ever meet. She is always smiling, laughing and hugging everyone. Everything she goes through has not changed her demeanor. She refuses to let TSC run her life and chooses to just be happy. Her outlook on life has helped us keep our sense of humor and live everyday to the fullest.
I like to find the humor in the fact that you never thought you would be writing her teachers asking if she had any bowel movements because of how constipated she gets from her medications. Or your mom texting you that her poop was “hard like little nuggets, I gave her some prunes.” But it’s humorous and gets me through the hard days.
We try to find the humor in everything we do, even the hospital visits, especially when you are dealing with doctors who sometimes forget how to talk to parents. Zoey had been intubated and was being moved to PICU when her tube came out and she started crashing in the hall. They had to rush her back to the ER to fix it. Everything was fine in a few minutes, but the ER doctor turns to me and goes, “Well that was scary, huh?” Really doc, is that appropriate to say to the worried mom? And then he high fives your husband and says ,“Until next time.” Your husband just replies back “Well, I hope not.”
Nurses have also told us that we are the calmest parents they have ever met. We have learned in Zoey’s 26 hospitals stays to just kind of stay out of the way, let them do their job and when she is stable you can hold her hand and lay with her. We remember a nurse saying, “You guys are amazing. I mean you are sitting here watching and just waiting patiently, when we have moms here who have a kid that stubbed a toe and they are freaking out.” See, humor gets me through these times.
Our family refuses to receive a “pity party”. Instead of people feeling sorry for us, we decided to try and raise awareness for an unknown disease. We have attended the TSC walk in Wantagh Park, NY every year it has existed; this will be the fourth year. Our team is Zoey’s Entourage. All of our family and friends come and support TSC and our team has raised over $15,000.00 for the TS alliance. This year the walk is on September 21, 2013. You can find our team page below, with pictures of Zoey and her story:
We’ve also met an amazing family, the Spears, whose daughter, Ally, also has TSC and they are the chair people for the Wantagh walk. Their family has a fundraiser every year for TSC before the walk to raise donations. We finally got to attend last year and donate some baskets for the raffles. It was a great time. I met fellow TSC families, watched people empty their pockets for an unknown disease, and win a couple of baskets as well! If you are in the NY area and want to get out and have a good time, and raise donations to help find a cure, join us or if you know a company or yourself would like to donate items to for the raffles, contact me and I can give you some information:
August 12, 2013 from 6PM-11PM.
The Nutty Irishman
323 Main Street
Farmingdale, NY 11735
Just $10.00 entry fee, for a fun time, with live music, raffles, Chinese auctions, food and a cash bar.
This year our local High School’s Key Club had a fashion show honoring Zoey. They were raising donations for our family’s medical expenses and helped raise awareness for TSC. The halls were covered in blue TSC ribbons and the crowd there was their largest yet. Even the elementary school wanted to get involved and had a “Zippers for Zoey” day. They all wore zippers and if they did not have one, the teachers put zippers on pins and the kids wore them all day. The Key Club made a video raising awareness for TSC and sharing Zoey’s story. I might be a little biased, but it’s the best video ever made, it should win an academy award. The link is below if you would like to learn a little more about TSC:
Our family will always raise awareness and give everything but up in trying to find a cure. Zoey has had seven MRI’s (so far), been intubated six times, has had 14 EEG’s, and too many blood tests to count, but she gets up from all of her procedures with a smile on her face. So we just take it one day at a time. Some days are harder than others, but Zoey does not let that bring her down. She gives the greatest hugs in the world and is our warrior. I can listen to her laugh all day long. So no pity party please; we are way too busy laughing, hugging and smiling the day away.
Day 13 of Guest Blogging for TSC Awareness Month
By guest blogger Alison Walsh (Buckinghamshire, England)
I was about 16 weeks pregnant and had just been to see my cardiologist about my heart murmur, when he mentioned having the baby’s heart scanned just in case he had a valve defect like mine. I replied that it would be really cool to see a baby’s heart scan as I had never seen one before, and I was never offered a scan with any of my other children. As I wanted to see a baby’s echocardiogram, I mentioned the heart scan to my baby consultant and she said that it sounded like a good idea for just in case, so she sent off for an appointment for me.
I received a phone call from Oxford University Hospital a week later to confirm an appointment. I got a bit nervous for a few days because I thought the heart scan would be at my local hospital. My partner gave me a lot of reassurance that my other children were fine so this baby should be too. At 18 weeks pregnant we were driving to Oxford at 7 am. I was nervous but excited all the way there.
The prenatal heart doctor took her time to scan me, being quite quiet throughout the scan. She just explained and showed us the heart chambers on the screen. After the scan she told us that she may have seen something that she wanted to keep an eye on, but for us to try not to worry as it could be something, but it could also be nothing. She asked us to return in four weeks just so she could be sure.
At the next scan in Oxford, the prenatal doctor brought in a colleague to help her have a look. It was then that she told us that our unborn son had rhabdomyomas (heart tumours) and she was worried about three of the tumours as they were quite large. Also, one of the tumours was positioned next to his heart valve. The doctor also told us that my baby had a very high chance of having TSC, and the worst case scenario was that he would die before being born.
I went home and cried for a few days, when I suddenly thought that my other children could have TS, and if they did, they were all fine. So my baby would be, too. This thought reassured me until we returned back to the hospital two weeks later and the two doctors were waiting in the scan room for us. They scanned the baby’s heart, then told us that one of the tumours they were worried about was moving in and out of the valve with the blood flow. If the tumour got any fatter, it would get stuck in the valve and stop the flow of blood, resulting in the baby’s death. She made us another appointment and said, “Hopefully, if everything is okay with the baby, I will see you in two weeks.” She gave us a sad smile goodbye.
Well, my heart just broke. I started grieving for my baby as I waited for him to die inside me. I couldn’t sleep or eat for a week. All I did was cry, and when I stopped crying, and he stopped kicking, I cried even more thinking that was the last kick that I would feel him give me. It was the worst two weeks of my life.
Baby Theo was oblivious to my suffering, and he was growing well. Two weeks later, we went back to the hospital where the doctor said she was so glad to see us back, and she had been worrying about us. The tumour was growing longer instead of fatter, and they were still worried about it interfering with Theo’s blood flow as the tumour was causing a lot of pressure in his heart.
I was told that Oxford University Hospital head cardiologists and Southampton head cardiologists had been having a meeting about Baby Theo, and if he survived until I was 30 weeks pregnant, they would give me a c-section and operate straight away.
A few hospital appointments later the cardiologists had another meeting. They decided that as the pressure in his heart was high but stable, and as he was really too small to operate on, they would only do it as a last resort for him. We were told that if he survived until I was 34 weeks pregnant they would take him out then. But I had to have fetal echo appointments every week from 30 weeks pregnant. I was also told to prepare and starve myself before each appointment as I might need an emergency c-section if the pressure in his heart got any worse or if the tumour grew fatter.
The pressure in Theo’s heart grew slowly and steadily but didn’t seem to affect his growth in any way. Theo shocked the doctors again by surviving and thriving. We were told his heart would not take the pressure of birth, so he would be delivered by c-section at 37 weeks all being well. He would have to be in a special care baby unit for three weeks at least as his heart wouldn’t work properly after birth due to all the tumours, but they also explained that the tumours would regress after birth.
After Theo’s delivery he only had to stay in SCBU for three days because his heart was working normally and he was feeding well.
Theo was talked about by so many heart specialists that they all came to visit him in SCBU just to see for themselves how well he was doing. They couldn’t believe it, and one of the doctors even wrote a presentation on him, as they said his heart should not have really coped with all the tumours and their postitioning.
Theo was allowed home on the condition that if he looked strange or blue that we would phone an ambulance straight away, and that he was to go back for appointments every week.
Theo continued to thrive at home. We received confirmation that Theo did have TSC2 when he was three weeks old as they had taken blood from his cord at delivery.
Theo did worry us for a while as he didn’t smile until he was ten weeks old and didn’t give a full on belly laugh until he was eight months old. I am very pleased to say that Theo is growing well, and though he gets a bit behind on his development, he then seems to catch up really quickly.
Theo has ash leaf spots on his legs and belly and sometimes stares off into space, which could be absence seizures. I try to catch them on camera to show the doctors, which is just hilarious as they only last 30 seconds, and by the time I get my camera, he has snapped out of it. He has had an MRI and we know he has multiple tumours in his brain and still some in his heart, but he is the happiest baby around. He’s always smiling. He is 10 months old now and he loves to cruise around the furniture, dribbling on everything as he goes. I think he would walk all day if I let him.
He loves his sleep and has slept through the night since he was a month old. He loves Mickey Mouse and he waves his arms and legs every time he sees Mickey on the television.
We live in hope that TS has affected Theo enough now and won’t affect him anymore.
Love you lots my gorgeous little boy! x x
Day 4 of Guest Blogging for TSC Awareness Month
By guest blogger Lana DenHarder (Grand Rapids, Michigan)
Brian and I had been married for four years. Like most first-time parents we were excited to be expecting a baby and equally excited to have an ultrasound to learn the gender. We had spent weeks talking about names and imagining how the child would look, wondering what personality traits they would have, if they would get my clumsiness gene or Brian’s athletic abilities.
My first ultrasound was around nine weeks to verify dates, and I had another ultrasound around 16 weeks to learn the gender. We were pleased to learn we were having a boy. Brian’s visions of teaching the baby to play ball and coaching little league were starting to become a reality. Shortly after we learned we were having a boy we decided on the name, Cole Ryan.
My prenatal visits went along as planned. I jokingly told my doctor (whom I absolutely love) that I was disappointed that we didn’t get any good pictures of Cole at the first ultrasound and maybe I needed to have another. We both laughed! As my pregnancy moved along, around 30 weeks my doctor said that Cole was measuring small and maybe it was time for another ultrasound just to make sure we had the correct dates and that there was nothing wrong. I was thrilled because that meant I would have more pictures for his baby book. The ultrasound was scheduled a week or two later at our local hospital and I met Brian there…with a full bladder, as instructed. The tech took us back to the room and we were geeked to see Cole on the monitor. We asked goofy questions and the tech quietly answered them and then told us to wait and she would be right back. That should have been our first indication something was wrong. Ten minutes, twenty minutes, she didn’t return. Brian went out to try and find someone because my bladder was still full! The tech said we needed to wait in the room. Ten more minutes had passed and the tech returned with a doctor who looked at the monitor some more. He then said to get dressed and wait in the waiting room. Brian and I looked at each other oddly because after my previous ultrasound we didn’t need to wait around.
Waiting was torture. The doctor walked in and said he had spoken with the radiologist and they found a tuber on Cole’s heart. My heart sank. Brian and I were not expecting this at all. Ten minutes ago we were joking around and now our world was falling apart. That was the first time we heard the words Tuberous Sclerosis Complex (TSC). He told us we needed to follow up with our doctor in the morning. Brian and I walked out to our cars, a million things spinning around in our heads, hugged and said we would talk when we got home. I watched Brian pull away as I sat sobbing while trying to call my mom on the phone.
Our doctor referred us to a high risk OB to assess the situation. They confirmed that it was likely that Cole would have TSC but an official diagnosis had to wait until birth. I had weekly appointments and ultrasounds. At 37 weeks the doctors believed that the tuber was blocking blood flow to the heart and they needed to get Cole out. They tried to mentally prepare us for heart surgery within hours of birth. I was induced on September 4, 2006 (Labor Day that year) and Cole was immediately taken to the NICU. After additional scans, we learned that Cole also had tubers in his brain, too many to count. The next 25 days felt like months. Most nights I would go home and quietly cry myself to sleep, hoping that Brian wouldn’t notice.
Cole was touch and go for a while but didn’t need heart surgery after all. He developed complications and one night we almost lost him. I will never forget the day he turned grey. September 13th. Looking back, at the time we didn’t realize just how sick Cole was. The day before we were supposed to take Cole home he had his first shutter spell (seizure). He left the hospital on a seizure medication.
The first couple of months were normal, or as normal as we thought they would be as first-time parents. Cole was eating well and very snuggly, however he was starting to miss typical milestones. We started Early On Therapy, and eventually physical therapy, to help strengthen his core. Cole started to have infantile spasms at 6 months and the day after his first birthday he had his first grand mal seizure. Within Cole’s first year we had tried various seizure meds and nothing worked. Our one last hope before trying ACTH was the Ketogenic Diet. Brian and I thought about it and it made sense to us. Cole wasn’t eating solid table foods yet, and he hadn’t developed a taste for bad foods that we would have to take away for the diet, so this seemed like a good time. Cole was admitted to the hospital and three days later he went home on the diet. Within a few months we noticed a reduction in his spasms and no more grand mals. He was on the diet for three years. In the end, we decided to stop the diet because he started to fall off the growth chart.
During a routine urology appointment, after the doctor preformed an ultrasound, he had to tell us that multiple tubers had started to grow on both of Cole’s kidneys. Cole was three years old. We are fortune to live in Grand Rapids, Michigan with a fantastic Children’s Hospital, Spectrum Health and DeVos Children’s Hospital. Up until this point, all of Cole’s care could be managed by various specialists locally. After learning of the kidney tubers, we contacted the Tuberous Sclerosis Alliance and asked for recommendations for a nephrologist. That is when we found Dr. Bissler at Cincinnati Children’s Hospital. We spoke with Dr. Bissler over the phone and made an appointment to get a second option on a care plan. Dr. Bissler was fantastic. He took the time to talk to us and make sure we understood all of the options. We agreed with Dr. Bissler and decided to move forward with kidney surgery to embolize the largest tubers. They were the size of golf balls. During Cole’s six month post op visit with Dr. Bissler, we discussed the benefits of Afinitor for Cole’s kidneys and SEGA. Dr. Bissler had also introduced us to Dr. Franz. Dr. Bissler discussed Cole’s history with Dr. Franz, and they both agreed that Cole could benefit from Afinitor. He started it in February 2011. We have noticed many positive changes in Cole, in addition to the kidney tubers shrinking and a slight decrease of the size of the SEGA.
In addition to the heart and kidney tubers, Cole has tubers on his eye and skin lesions.
Cole is considered globally delayed and is on the autism spectrum. He started attending a special needs preschool when he was two. Watching the bus drive away with my son was scary, but I realize that was one of the best decisions we have made. Cole’s development slowly improved. He learned to crawl when he was 2 1/2, walk when he was 3 ½ years old and his speech continues to improve. Today, he has close to 60 words and phrases. He currently attends a special needs school where he has fabulous teachers and support and continues to make positive strides. I believe the Afinitor has helped him come out of the medical haze he was in and is allowing him to move forward with his development. We have noticed the biggest change in him in the last two years since starting Afinitor. He is making intentional eye contact, attempting to repeat new words, initiating play, self feeding, and demonstrating appropriate responses when asked to do simple tasks.
We often hear people comment and ask how we do it. There are definitely challenges to raising Cole, but he was our first child and we don’t know any different. In our minds, this is normal. We also have a three-year-old daughter, Lauren. Brian and I were tested and we do not have the TS gene. Lauren does not exhibit any characteristics of TS so we decided not to have her tested. Our lives are full of doctors’ appointments, therapy sessions, sleepless nights, stress, worry and wonder. Cole has closed the gap on his physical challenges (walking) and now we struggle with behavioral (biting and scratching) and emotional issues. In spite of these challenges, Cole is a lovable, happy, determined 6 ½ year old little boy who loves to snuggle, sing (in his own way), spin balls, ride his bike, swing and run around the backyard. He is on three different seizures meds and is seizure free. It is difficult to look too far in to the future because we never know what will happen, but I can say that things are starting to calm down and feel a little normal.
Cole’s care continues to be managed locally and with the Cincinnati TS Clinic. We are very fortunate that Brian’s and my family live close and are willing to help with whatever we need. We definitely couldn’t do this alone. Cole is such a joy and we are very blessed to be his parents.
Day 3 of Blogging for TSC Awareness Month
By guest blogger Laurie Mersberg (Round Rock, Texas)
When I was asked to share my story, I was first honored, then scared. Where to start? I guess the beginning…
I was born with the angiofibromas on my face in 1971. They had no idea; they just told my mom it was a heat rash. No big deal. Nothing to worry about. I was also born with a club finger and a double cleft palate, but no one connected the dots. I mention this because my club finger is my left middle finger and it matches my personality, strange and unique. It would come in handy growing up as I was picked on. I didn’t talk much due to my cleft palate. When I was 12, I had surgery and was on a liquid diet for a year. My jaw was wired shut for complete healing. When healing was done, I had plenty to say. I found my voice, not just physically, but metaphorically, too. Who knew I had such a sarcastic quick wit. I learned my voice and word was my weapon and club finger was like my sword, but not in any physical way. I found it usually stopped people in their tracks.
Jump ahead a few years to when I was 16. My mom came to me and said I had an appointment with a dermatologist. I was so happy these bumps were going be gone. I had such hope I was going be rid of this nightmare and be like all the other girls. This was not ever going to happen. They took a biopsy of the bumps on my face, then called us back a week later. I was ready for whatever they wanted to do. The doctor came in with a book sat down and said those words I will never forget. “You have tuberous sclerosis, but not to worry, you just have the side effects.” This doctor had no idea how wrong he was going to be. He showed me a book and said, “See, it could be worse.” It was pictures of children with Down syndrome, rashes all over, clubbed feet and cleft lips. He said, “You’re lucky, but I don’t recommend you have children because they can have a worse case.” I looked over to my mom. She had some tears. I thought it was because of the no babies most likely coming from me. She said, “I need air.” She called my dad while I waited in the car. When she got in, she said, “Well, at least you got your personality. You’re just never going be a pretty girl and you’re smart.”
I was shocked. She’d been vain, but I didn’t know it went that far. When I was little I used to ask, “Mama, am I pretty like Dee?” (my older sister). She would say, “Yes honey, you’re pretty…pretty ugly.” I didn’t know what she meant until I got older, but I did have my wit and sharp mind. I didn’t live at home. I was on my own shortly after I graduated. I had my apartment. What to do? I was tired of being an adult so I joined the United States Army. I thought, “Let them take care of me.” Remember, I was told I had only side effects, so that was good enough to get in.
I’ll skip over my military career and go to my next big hardship. I got married…well, got knocked up by my son’s dad-then we married. The army wasn’t happy. They get mad when their personnel gets a girl preggers. I was scared when I found out I was pregnant. I told my son’s dad about what the doctor said and the pictures he showed me. My son’s father was very Catholic. He believed the baby would be okay since I had just the side effect sand medicine had come so far since 1971. So I jumped in with both feet: wife and soon-to-be mother. A few days later we got a letter to go to Hawaii. We were not happy since we heard it was hard to live there on Army pay. The rumors were right. When I gave birth to my son, I had preeclampsia and toxemia. He was born one month early, but because of his size, they put full term. He was so beautiful and no sign of TSC. I was so relieved, and so was his dad. We spent three days at the hospital and then they sent us home. I had no idea everything would change in five days. My world would turn into a nightmare…
A week after I gave birth to my son, I got up to go to the restroom. I remember walking in and my left side went numb. Next thing I woke on the floor cover in urine. I cleaned myself up, woke up my son’s father, and told him what happened. He said, ”You’re over tired. Just get some rest.” Now here’s the part I totally don’t remember. My son’s father came home and he said he was banging on the door for 30 minutes. In Hawaii, there’s no A/C, so everyone keeps their windows open. All the windows were closed and locked. He could see in them and I was looking off, walking around in a circle holding my baby, but looking confused. He finally broke in. I had no idea who he was, or why I had a baby. He grabbed our son and me and we left for the hospital on post. He walked us in and told the doctor on duty, “Something is wrong with my wife. She doesn’t remember anything.” The doctor told him to take a seat. He said that I looked like I was on drugs. He told the doctor I wasn’t on drugs. The doctor told him to sit down, shut up, and he’d get to us when he could. Four hours later, a paramedic, an older man with white hair and a beard, walked by and asked my ex, “How long has she been like this?” My ex said, “Well, when I got home she was like this.” The old man asked, “How long was this?” My ex answered, “Four hours ago.” The old man got the doctor and asked if I been seen. He said, “No, she’s just another junkie army wife.” The old man said, “No, she is seizing and you’re helping to kill her! She’s in a static-epileptic state.” The doctor said, “She is not having seizures.” The paramedic told the doctor, “Since she is a civilian, I’m taking her to N.A.M.C.” It’s the big pink hospital on Oahu.
When I got there I had fever of 105, so of course they admitted me. They told my ex to go home. When he got home the phone rang and they told him to come back. When he got there they told him I was in a coma, medically induced, and to call family in case thing got worse. He was scared, confused, and not being told anything. So he made those calls not knowing what to say. I woke up four days later tied down to a bed. I was confused. The last thing I remember was peeing on myself. Why was I tied down? My ex walked in the room, looked at me, and ran out to get the nurse. A nurse and doctor came in to ask if I knew who I was and where I was. The regular neuro questions. They asked and I answered the best I could. I realized my speech was slurred. Finally I asked, “Why am I tied down?” The doctor said, “Well, when we took you out of the coma, you got combative and started swinging.” I said, “Woke from where?” They said it happened after a seizure. I said, “ I don’t have seizures.” He told me, “You do now.” Then I was off to the neurologist where he said, “You know you have tuberous sclerosis?” I said, “No, I have side effects not the actual disease.” He said, “No, there no such thing as just the side effects. You have it, and how dare you lie to the Army about your medical.” I was stunned, and he said, “Congrats, now you’re epileptic.” I said, “No I’m not.” We went back and forth, and he said, “I find it hard to believe you have never had a seizure before now.” I said, “I never have.” He called me a liar and walked out. They untied me, and I asked if I hurt anyone. Then a nurse came in with a black eye. I didn’t have to ask. I knew I did that. They explained I had a fever but they didn’t know why. After a month and a half they were still trying to find why my brain was being baked, when they realized I was having some brain damage. They were working hard to find what was going on and what woke my tuberous sclerosis. I wanted to know, too. All I could think of was that book from years ago.
One day while taking a shower, I noticed this bump in my stomach. I asked my ex to feel it. He was puzzled so he called in a nurse. She felt it and said that after giving birth, some women will have swollen lymph nodes. But she let the doctor know. Doctor after doctor all said the same thing. Finally one of the doctors I saw when I was pregnant came in to say hi. She felt bad because she felt her team missed something. We showed her the bump and her eyes grew big. She got on the phone and ordered all these tests. We asked what was going on and she said, ”I think you have an enlarged liver. If I’m wrong, we’re in trouble.” The next thing I knew, doctors and nurses were everywhere, sending me there, then saying to go here. I saw every part of N.A.M.C, more than any other patient they ever had. After all, it was a research and teaching hospital. After four days of being poked and prodded, they came in and told me what we all had been waiting for. Being there due to the seizures and high fever saved my life. They found a mass on my right kidney as big as a grape fruit. It had to come out it because it was being fed by blood vessels. They didn’t know if it was cancer. We were in shock and then they said, “There’s more. Both kidneys are full of tumors, and in five years you’ll die or be on dialysis.”
A week later I was in surgery getting this mammoth of a tumor out. They kept me in the hospital for six more weeks and used my body as a teaching tool until I had enough. They asked if I would go to the morning report. I thought there would be like five interns, but this was the last time my body was going to be used as a medical teaching tool. I walking in to this lecture hall full of interns. There were over 100 young, eager doctors, and they had my son in a bassinette. They talked about TSC (then it was just TS). They started disrobing me as each came up and gawked at the medical freak. I started crying, but as soon as I saw them by my son, that was enough. I screamed “I’m Laurie, not tuberous sclerosis!” as I put my robe on. I ran to my baby and ran down the hall. I was sent home. I guess the medical test dummy was no longer needed. As for the surgery, it was the most painful horrid thing I ever went through, worse than child birth, but I’ve always been a fast healer. Shortly after getting out of the hospital, my marriage broke apart. Whoever my ex married was no longer there. I was so different, I didn’t know myself. The army sent me and my son home, and they kicked my ex out honorably. He, of course, went back to his home in Louisiana. I came home to Texas.
I won’t tell you the long story of single momhood. The next few years I wish I could say were all roses, but they were not. Y’all might relate. I tried to be the best mom ever, and I loved being mom more than anything, but inside I felt numb and empty. There were days when I didn’t sleep and Tylenol PM was my buddy. I thought I was broken. I thought when I moved back my friends and family would be happy, and they were at first, but soon they saw seizures. Funny how out of the blue, plans to meet up changed, and they got really busy and family avoided me. I had what the doctors called uncontrollable seizures, and I was prescribed so many meds. One day my sister said, “If I was you, I would just kill myself. Really, like what kind of life are you ever going to have or your son?” It echoed so many times, so I did it. I took all my seizure meds and a bottle of wine, went to my room, and locked the door. Apparently, while taking pills with wine, I get chatty and like to call people. Next thing I knew police were in my room with EMT and all I said to them was, “I don’t remember it being share day.” I was sent to the ER and my stomach was pumped. Then I was sent to a psych ward. My stay there is a book in itself. I’m not proud of what I did; it was selfish. Then people asked, “What about your son?” I really thought he would be better off. The doctor filled me with so many meds, mostly lithium, not taking my TSC into consideration. I did three years of therapy. All of a sudden, I was always tired. If I did the dishes, I had to take a nap. It was like someone flipped a switch and all I could do was sleep. I saw my neuro and told him I was always sleepy. He ordered a test, and next thing, I was at an oncologist. I saw him a few weeks, then I was off to the nephrologist where I was told I needed dialysis. Do nothing and I’d be dead in a year, or do dialysis and get on a list. It wasn’t five years like the doctors in Hawaii said. It was six.
So now it’s been 12 years, and my TSC has taken every part of my body. Of my kidneys, half my right and all my left are removed completely. My liver is covered, my lungs (in women they call it LAM), my brain, and they’re in my bones. I have had over a hundred surgeries since 1995. My story sounds bad, but in 2005 I had a VNS and no more uncontrollable seizures. They also use the VNS with people with bipolar and severe depression. It works. I still have seizures, but not as hard. I have about 20 petite absences a day, and about six grand mals a month. As for the empty feeling, staying up days on end, and feeling like I was alone, well, there was a good therapist and friends who were always there. I had blinders on and I didn’t see them. I focused on the bad and was blinded to the good. It was about 2001 when I turned a big corner. I was Laurie and I wasn’t tuberous sclerosis. I was Laurie: the mom, friend, and daughter. I stopped feeling bad for being sick and decided I was no longer going to be a victim to this disease, but a survivor. I was coming back. Funny, sarcastic, quick wit, ME! With what VNS brought, and with the love of my son, people saw me, not the tubers or the deformed figure, just me. My son is now 18 and has seizures. Some doctors say he has TSC. Some say no. I tell him, “You’re not seizures. You’re Sean, who has seizures.” For years we have said, “I have an illness. It doesn’t have me.” Love and hugs to you all and many prayers…..
…but I’ve been asleep. No, really. I’ve been so blessed as to have not thrown up once for the entire duration of the first trimester, but as for that fatigue thing they mention? I’m matching my cat hour for hour. Today was the first day in weeks I’ve summoned the energy to exercise, and of my usual 4 mile walk, I managed just a little over a mile before I was ready to curl up under a shady tree. In fact, the most significant aspect of the walk was when I came across Pachelbel’s Canon in D on the iPod. It’s not one of my usual musical motivational tools, but I just felt I needed to hear it. When the violins swelled, so did the hormones and emotions, and the baby immediately let me know that I should immediately take up the violin, indeed should have done it 20 years ago and that I’m a musical failure. Great.
We had our first ultrasound last week. I was expecting to have a Jennifer Aniston Friends moment of “I don’t see it!” but it was clearer than I could have expected. Unfortunately, being the 12th week, we had no luck with the sex, but it was fascinating to see the translucent skin and vital organs. The baby was all stretched out in a manner that reminds me of the way my husband hogs the bed. So I guess I know what I’m in for. I also realized at that moment that it was a real child, and had to breathe into a paper bag for the rest of the day.
Since I’m way behind on this blog: some of my favorite reactions to the news of my pregnancy:
1. So no drinks for Becky at the wedding? Wait, maybe this is good for my wallet. (husband’s cousin)
2. Holy sh#%! (long shocked pause) You’re spawning? (my brother)
3. I just peed my pants a little…I’ll bring back little Swedish baby toys or baby skinny jeans! (friend who is studying in Sweden)
4. So he IS hitting that! (husband’s cousin’s fiance)
But I needed something else to talk about. I mean, sure I could stick to my personal life, but the stuff that gets me really fired up and sarcastic is work. Probably because modern pharmaceuticals helped me find an inner peace I didn’t have the first time around blogging.
So let’s start with the attempts to get pregnant. Don’t worry, it’s not that kind of site. But I have to say, I was shocked throughout my 20s to discover how many people experience fertility issues and miscarriages. I know people, multiple people, who have done fertility treatments, in vitro, adoption etc. And yet, many girls (sadly not enough) hear their whole lives IF YOU DON’T USE PROTECTION YOU WILL GET PREGNANT! so I couldn’t believe it was really true until I tried it.
But there is always a bright side. The bright side being that I could drink for another month.
But what do you know? The second time worked. I remember my final drink fondly, an apple martini, two days before I found out.
I’ve already had to out myself to a friend. It’s just that weird when I go out and don’t have a drink. This could be a problem.