Tag Archives: heart tumors

The Great Seizure Wait

Day 12 of Blogging for TSC Awareness

by guest blogger Hannah Lorraine  (St. Louis, Missouri)

I was standing in the nail polish aisle in CVS when I got the call.  I rarely ever paint my nails, so that was odd enough, but getting a personal call from my OB was even stranger. She had news, she told me. They saw a mass at our 20-week ultrasound.  In her heart.  Maybe nothing, maybe serious.  A specialist, she said.
And I don’t remember taking in a real breath after that for a very long time.

Elise 3 daysI held my breath through the first appointment with the cardiologist when he told us he saw not one, but two tumors taking up a large area, one in each ventricle. I held my breath three weeks later when one of the tumors grew so large that they sent us to consult with a surgeon.  I held my breath through learning the ins and outs of what heart failure looks like and praying I’d make it to at least 30 weeks without seeing any signs of fluid build-up around my baby’s tiny heart. I prayed and wept and pleaded with God that he would have mercy. I had so many ultrasounds, I learned how to look for all the markers myself. I always felt so relieved to see her heart pumping away, the largest tumor dancing inside rhythmically.  I saw her little hands, always in the fighter position, a good sign I thought.   I held my breath when they told us that she probably had a genetic condition that caused the tumors and that she could have them in other parts of her body as well. And still she kept growing and thriving.

Through the incredible fog of hope, confusion and fear, I gave birth, Elise 4 monthsagainst all the odds, to an otherwise healthy, full-term baby girl. Not to a genetic disorder, not to a defective heart, but to a person. One whom I had loved so intensely through it all, but had only just begun to know. A person with my eye color and her daddy’s chin and a personality as unique as her fingerprints. A person with countless other genes besides the broken one–all making up bits and pieces of the whole beautiful baby that is my daughter. And I am so unbelievably grateful. To know her, to have her as a part of my life. To have the honor of being her mother and walking with her through life. I can barely remember what I was thinking before the day that 2015-05-06_14.20.48everything changed, before hope and fear became two almost indistinguishable sides of the same reality for us.
Then a part of me shattered when we found the tumors in her brain, too. Oh, please, God, not her brain. The diagnosis was confirmed now: tuberous sclerosis.  I had never heard of it before this, never met anyone with those kinds of symptoms.  Sometimes I look at her soft, fuzzy head and cry, wondering how it could be filled with tumors when she looks so normal, so beautiful.

Elise is now seven months old and our waiting game has changed.  Instead of worrying about her heart, we wait and watch for the seizures that usually result from the brain tumors she has. Every day that goes by without one is a joy. No healthy moment is taken for Elise 3 monthsgranted.  Elise is growing and developing beautifully.  She is babbling and sitting unsupported and already crawling.  I have learned to enjoy these healthy days, and yet in my weak moments, I find the familiar fear returning and worry that she will lose the milestones she’s gained. I worry that someday seizures will steal the clarity in her eyes and dull the sparkle from her smile. And so we wait. And refuse to let it define our lives.

We had an EEG this week that showed a number of spikes while Elise was sleeping, upping our concern and our seizure watch. Our neurologist told us that if those spikes turn into seizure activity, the likelihood is that it’s going to happen in the next few months. Statistics are not our friends, but they are not our story either. I am scared and sad, but I refuse to allow the seizure wait to steal my joy in the healthy days. My girl is a fighter. We decided to name her Elise so that she would always know that she is “dedicated to God” and that God is her strength, no matter what suffering she might face. None of us are certain of our tomorrows, but we will rejoice in gifts we have been given today. And carefully watch and wait.

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Joy Times Four

Second Annual “Blogging for TSC Awareness Month” Day 19

by guest blogger Courtney Bailey  

1236820_10202010593452499_960261714_nMay 23, 2013… the day that my got heart broken. Two weeks prior we had found out that we were expecting our fourth boy, yes four boys! The ultrasound went well but he was lying in a position they couldn’t get any good heart pictures. We went back to get some pictures of his heart. I knew something was wrong when she kept measuring and remeasuring and taking picture after picture. My husband, Phil , had to return to work. I sat alone in the waiting room until every last person was gone. When they finally called me back, a complete stranger told me that our son had some spots on his heart. She assured me it would be nothing and I just needed to get another ultrasound to be sure. Nothing to worry about she said. I knew differently.  On June 6, we learned that our precious son likely had Tuberous Sclerosis.  The tiny two white spots on his heart had turned into numerous large tumors, including a very large tumor on the outside of his heart. It was making his heart beat faster than usual and he was developing fluid around his heart. We made weekly trips to Iowa City for appointments, ultrasounds and echocardiograms.  Seventeen straight weeks of going for testing. I look back now and see all the trips as a blessing. I got to spend a lot of one-on-one time with my husband.  We grew closer instead of apart.

I was induced a few days early and my wish that I would get to hold him came true. I held him for just a moment and he was whisked away to the high-level NICU.  When they finally wheeled me to see Lelan, my husband mentioned that they were looking at a weird skin mark on his belly and that moment I knew for sure that he had Tuberous Sclerosis. He went through a multitude of tests. One morning a new doctor we had never seen came in and told us that his MRI showed multiple brain tumors. My heart was literally shattered in my chest; it was the worst moment in my life thus far. We got to take him home that day but I felt like my life was moving in slow motion. We still had three happy rambunctious boys to care for. I felt like I was constantly staring at10155615_10203637356680563_1669194936_n Lelan to see if he was having a seizure. Every twitch, jerk, wiggle — all over analyzed. It was making me insane. I was crying myself to sleep each night. My husband said I would even cry in my sleep. The constant worry, the heartache, the what-ifs were wearing me away.  I decided to change my view; there was nothing that I could do to protect Lelan. I had to just give up and let God protect him. God loves Lelan more than I ever could. We made many more weekly trips, tests, and procedures. The heart tumors they said would shrink weren’t shrinking until one day they had just shrunk drastically. The more I tried to let go and let God handle it, the more I was able to enjoy Lelan and the other boys, ages 7, 3, and 1, and not just worry about what was going to happen to Lelan and  this stupid disease that had stormed into our lives without a warning. I was back to enjoying my kids, my husband and choosing to be joyful and live with purpose.

Our story is better than a lot of other TS kids; being a TS mom can be a VERY lonely place. People don’t understand unless they are in the shoes. Lelan is 8 months now and he crawls and pulls himself up. He babbles Mama and Dada and he feeds himself. We are fully aware that at any moment he could start having seizures and our lives could change drastically.. But for now we are completely living in the moment.  We read that extra bedtime story, we sometimes have ice cream for breakfast, and we see each and every day as such a gift and blessing. I lay my head down every night and thank God that Lelan didn’t have any seizures. We use Frankincense essential oil on Lelan every day in hopes to shrink his tumors. He still has heart tumors and brain tumors, and he also has lost the pigment in spots on his legs and stomach. I have done a lot of research where frankincense can help or prevent seizures. I’m clinging to the hope that it will work for us. You can email me at Baileycp731@live.com if you are interested in more info on essential oils. We are blessed, we are lucky, and we are so very loved. My advice is to keep talking, don’t hold in the worry — it will eat you up. TS is a mean and cruel disease that is different in every single person. The what-ifs will take over your life if you let it. We choose JOY at the Bailey house.

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