Bethany Finally Gets the Correct Diagnosis of Having a Brain tumor
“God didn’t promise that nothing bad would ever happen to my child, but praying released the power of God to work in his life, and I could enjoy more peace in the process. ” ~ Stormie Omartian
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A couple of weeks before Bethany’s second birthday she seemed to have been the last member of our family to come down with the 24 hour stomach bug. But after about a week’s time she was still vomiting off and on with no real rhyme or reason. Everyone else had gotten over the bug in the usual 24 hours. At this point I was becoming a little concerned because she had also begun wandering around whining and holding her hand over her head. She couldn’t say a word at this point, but it was obvious that she had a headache. A trip to the local walk-in clinic was in order. We decided on the walk-in clinic rather than our regular primary care nurse pratitioner because the clinic was open in the evening after my husband’s working hours. We only had one car and it was a borrowed one at that! Both of our old cars had bitten the dust and we could not afford to get another one yet. The doctor on duty surmised that she was suffering from a mild case of the West Nile Virus which was going around at that time. His instructions to us were that since it was obviously a mild case that we should just let it run its course- about two weeks. But he never looked into her eyes.
It was during the two weeks that we were letting the virus run its course, that one day after Bethany’s nap, I picked her up out of her crib. When I put her down on the floor to play, she lost her balance and fell. I thought it was a little weird, but chalked it up to her still being groggy from her nap. Also During this time a friend of mine noticed that Bethany’s eyes looked weird. My husband and I hadn’t noticed this, but after she pointed it out we could see it also. Added to that was the fact that she was still vomiting intermittently and haphazardly. Now we were getting very concerned. We thought that maybe she had an inner ear infection. We searched her symptoms on the internet only to find that they matched many, many illnesses. We even contemplated that she might have carbon monoxide poisoning because our old car had had an exhaust problem. We were beginning to feel desperate! We decided that My husband should stay home from work the next day and we would take her to see our regular primary care nurse practitioner.
We arrived at our primary care nurse practitioner’s office bright and early the next morning. It was an unusually mild and beautiful sunny November day. It was November 1, 2000, the day after Halloween. In our part of the United States weather is usually quite wintry by November 1, but this particularly gorgeous November day found us needing to wear only a sweater to guard against a mild chill. It was remarkable weather really! Little did we know that our beautiful springlike day would soon turn into a dark and gloomy nightmare.
We informed the nurse of all our concerns about Bethany’s health. We described the symptoms that we had observed in Bethany in great detail. The nurse looked into Bethany’s eyes and then asked to see her walk. Bethany proceeded to walk in a zigzag pattern, losing her balance repeatedly while attempting to walk back and forth, up and down the hallway. Immediately upon observing Bethany’s attempt to navigate the hallway, the nurse told us that she was ordering a cat scan of her brain and sending us to a Pediatrician with experience in Neurology. We then found ourselves on our way (in our borrowed vehicle) to a nearby small town hospital.
Of course we knew that a cat scan of Bethany’s brain was not good. We knew that in fact, it was bad- very, very bad. The word brain tumor had not as of yet been uttered, but we obviously knew that the nurse was suspecting something wrong with Bethany’s brain. During what felt to us to be the longest car ride we had ever taken in our lives, (11 miles) my husband and I tried to convince ourselves that it was not really anything too serious, but that the nurse was over reacting and had ordered the cat scan just to be on the safe side. She was just covering all her bases, we reasoned, to protect herself from a mal-practice suit.
Once inside the Pediatrician’s office The first thing she did was look at Bethany and ask us if her head had always been that big. I was shocked and bewildered by this question. Her head had never seemed to be too big to us. I answered that if her head was indeed larger than normal then it must have happened so gradually that we hadn’t noticed it getting bigger and bigger. The doctor seemed to be satisfied with that answer and went on to examine Betty Boop in nearly the exact same way as the nurse practitioner had. After this examination was over, the Pediatrician confirmed the need for a cat scan. We were sent down to the Radiology Department to wait until the technician was ready for us.
While waiting for the scan, my husband felt the need for some coffee. Naturally, while he was gone the technician was ready for Bethany. I insisted that I be permitted into the scanning room with her. Normally, parents are not allowed in the scanning room. The technician reluctantly agreed to let me in only because he was relatively certain that Bethany would not keep her head still without assistance and it was so early in the morning that his assistant had not yet arrived. He asked me to keep her head perfectly still by placing one finger on a specific spot on her chin. If I moved it even a fraction of an inch, my finger would be seen on the scan and he would be in great trouble for letting me in the scanning room!
I observed the image of my precious daughter’s brain on the screen. I had never seen a scan of a brain before and therefore did not recognize what I was seeing. I asked the technician if there was anything unusual with her brain. “Yes” he answered and pointing to a spot on what I was informed was Bethany’s cerebellum, he continued. “There is a very large mass right here.” I cannot describe to you and do justice to the absolute feelings of dread, fear, disbelief, sorrow, sadness, confusion, heartbreak, darkness, and anger that went swirling through my emotions like a tornado out of control. It felt like I was not really there but only watching the scene unfold. I heard myself repeating, “Blood of Jesus” over and over again. The poor technician must have thought he had a religious nut case on his hands! Just then my poor husband returned. I blurted out that Bethany had a brain tumor and he stood there in silent shock for a minute while his brain attempted to process what I had actually told him. I was now crying hysterically. He really had no time for his own reaction to the news because he had to deal with mine.
The Pediatrician was informed of the cat scan results. She explained to us that Bethany had a tumor in her cerebellum that was approximately the size of a base ball. The tumor was blocking the flow of Bethany’s cerebrospinal fluid and causing it to build up in her brain. This hydrocephalus was killing her. It was crucial to relieve this build up of fluid immediately or Bethany would most likely be dead within twenty four hours. The Pediatrician canceled all her appointments and closed her office for the remainder of the day to make arrangements for Bethany to be transported to the nearest hospital that could perform brain surgery as quickly as possible. I asked her if we could take her home to collect some items that we would need for a hospital stay and so that our other children could say goodbye to her just in case she actually did die. The doctor replied, “No, I cannot let this baby out of my sight until you are in an ambulance on the way to the hospital. See if you can get someone to bring your other children here immediately so they can say good bye to her just in case something happens. It is possible that they may never see her again.”
I was able to get in touch with a homeschooling mom friend of mine. She didn’t think twice about squishing all the kids illegally (there weren’t enough seat belts) into her car and driving them to the hospital so that they could see their little sister for what quite possibly could have been the last time they ever saw her. After tearful goodbyes the children left us. It was one of the most depressing moments in my life and probably theirs also.
The ambulance arrived. It was time to get Bethany to the larger hospital. It was arranged for me to ride along with her in the ambulance and my husband would drive over in the borrowed vehicle, but it wouldn’t start! It was not the policy of the ambulance company to permit two parents in with the patient, but thankfully the driver made an allowance for us. So we left the dead borrowed car in the little hospital’s parking lot and began our one hour long trip to the University Hospital for brain surgery!
We arrived at the teaching hospital and were ushered into the emergency room where we immediately experienced culture shock. Up until that point, we had been home birthers, home remedy types. We had little experience with doctors let alone with hospitals. Bethany was promptly poked, prodded and tortured with procedures such as having an IV and urine catheter placed. She had to be anesthetized and intubated (a breathing tube place in her throat) in order to get a detailed MRI of her brain. Can you believe that on the waiting room television a medical program about a doctor with a brain tumor was on?! The worst torture of all however, was that because she was scheduled for surgery, she would not be able to nurse until after it was over. It was heartbreaking and heart wrenching to have to refuse her attempts to nurse.
After the MRI was done we were taken to the pediatric intensive care unit to await the MRI results. Bethany was then wired to a heart monitor and had a little tube inserted into her brain to drain the cerebrospinal fluid that was building up there, causing life threatening pressure in her brain. Somehow she was also hooked up to an inter-cranial pressure monitor which would alert the nurses if the pressure in her brain rose dangerously high enough to require immediate brain surgery. It was here in the pediatric ICU that we attempted to settle in until surgery. Bethany’s assigned Neurosurgeon arrived to inform us that the MRI results led him to believe that her tumor was a “good” one. He told us, “If you have to have a brain tumor this is the best kind to get.” I can’t tell you how much better his statement made us feel! (Sarcasm). He felt that Bethany wasn’t deteriorating so rapidly that she couldn’t wait until early the next morning to have the tumor removed. He wanted his interns to get a good night’s sleep before the surgery. He and the interns were most likely the only ones who did get a good night’s sleep that night!
Very early the next morning the orderlies came to prep Bethany for surgery. All too soon we were rolling her down the hall to the operating room. We kissed her and hugged her and told her Jesus would be with her. She shook her head yes. She didn’t even cry! She and I had never been apart before that moment. We cried and prayed. Handing my baby over to the surgeons was by far the hardest thing I have ever been asked to do to this day, But amazingly a perfect peace washed over me. Of course, it was my heart’s desire that she live through the surgery, but if she didn’t I knew that Bethany would go straight into the arms of Jesus and that her grandma whom she had never even had the chance to meet would be waiting to welcome her into heaven!
Three hours later Bethany was out of a procedure that had been uneventful. They had been successful in resecting 99.9% of the 7 centimeter tumor. The doctor reported that there had been no complications or anything out of the ordinary. He believed, based on the looks of the tumor that it was benign, but his opinion would have to be confirmed by the official pathology report. He then told us that we’d be discharged and on our way home in about a week!
The official pathology report informed us that Bethany’s tumor was a grade 1 pilocytic astrocytoma. Her tumor was also encased in a cyst! After receiving this report I remember feeling crushed, disappointed and greatly disillusioned. I asked God how he could have let this happen to my baby? After all, I reasoned with Him, “Didn’t I pray every single morning for you to protect my children from illness?” God answered me by saying, “I did protect her from this illness. I enclosed the cancer in a cyst. If I hadn’t done that the cancer would have spread all over brain and would have been impossible to completely remove”!
The doctor explained to us that Bethany’s tumor wasn’t exactly benign. He called it malignant in the sense that it would have been a 100% fatal tumor if it had not been removed. Generally patients with this kind of tumor are cured with surgery only. It was most likely that she would not need radiation or chemotherapy unless the tumor came back. She would however, need to undergo anesthetized MRI’s every year for ten years and then every other year for the rest of her life to monitor tumor regrowth, if any.
COMPLICATIONS AND SETBACKS
Bethany suffered through many complications, infections, and other assorted setbacks. The first set back was that her incision began leaking cerebrospinal fluid. For some strange reason, her brain had begun manufacturing ten times the normal amount of spinal fluid that an adult’s brain makes. This necessitated a tube being inserted into her spine and snaked up to her brain to temporarily drain the excess fluid into a bag. However, after about two weeks with no decrease in the volume of the fluid being drained, it was decided that she needed a permanent shunt installed into her brain which would drain the extra fluid into her stomach. Unfortunately, the shunt became infected with meningitis and needed to be removed. This required the re-insertion of the tube up her spinal column and into her brain again while waiting for the infection to clear up. When the infection was gone the plan was to install a new permanent shunt on the other side of her brain.
The drain bag catching the excess fluid had to be kept at ear level at ALL times. After a certain amount of fluid had been drained the tube was clamped shut until it began building up again. When this happened we could literally see her head start swelling up! We had to be extremely careful not to let her brain over drain or drain to quickly.
Needless to say this was scary, stressful and nerve wracking! I quickly became an expert at keeping that bag ear level while placing her into her stroller then pushing the stroller with the rack holding the bag of spinal fluid at ear level around the hospital hallways! Unfortunately, this temporary tube also eventually became infected with meningitis and had to be removed. As a last resort a tiny tube was place directly into her brain which drained into the bag. Finally, she was able to heal from the infection and miraculously her brain began making less spinal fluid. She no longer needed a shunt or drain of any kind!
At this point in Bethany’s treatment she had a picc line installed so that she would not need to be stuck with needles several times a day for blood draws. This significantly decreased her suffering. She also needed a feeding tube inserted into her nose, down her throat and into her stomach because she had totally stopped eating at this point.
One night, quite unexpectedly, Bethany suffered a very long tonic clonic (grand mal) seizure. She had never had a seizure before. An MRI revealed that because the tumor was so big (the size of a base ball), and she had lost so much spinal fluid, her brain had been squished and stretched, leaving too much room for her it to move around. As a result, her brain had fallen 1/4 of an inch causing a cerebral hemorrhage in her left parietal/occipital lobe border, a massive stroke in her left parietal lobe, and blood clotting in another part of her brain. Yes, Bethany was now put on Heparin, a blood thinner to dissolve the blood clots in one part of her brain, while another part of her brain was bleeding uncontrollably! She was also put on dilantin to control seizures.
Finally, after spending two months (as opposed to one week) in the hospital, the day arrived when Bethany was well enough to go home. There was just one problem, she still technically had hydrocephalus (excess cerebrospinal fluid in her brain) with no shunt. We were told that we would have to observe her very carefully for signs of fluid build up in her brain. Excess sleepiness and inability to wake up (coma) were the symptoms. One doctor told us that her chances of sudden death were about 1 in 100. Every day for months I would wake up and wonder if this was the day that Bethany was going to suddenly die!
Flash forward 12 years. Bethany is still with us, thank the Lord! She still does have excess cerebrospinal fluid in her brain, but it flows correctly so we no longer worry about sudden death from hydrocephalus. However, even after 12 years and consults with Neurologists up and down the east coast, no doctor has ever been able to get her seizures under control. No medications help and she is not a candidate for a VNS or surgery. The longer a person suffers from uncontrollable seizures, the greater their risk of becoming a victim of SUDEP. SUDEP is sudden unexplained death in epilepsy. So we do still worry about sudden death. I pray every time she has a seizure that it won’t be the one that suddenly kills her. Living with this kind of stress day by day has become one aspect of our new normal.
After being discharged from the hospital, our idyllic, non-medical Lifestyle as we once knew it was over. Bethany has been officially diagnosed with traumatic brain injury, autism, partial blindness and an uncontrollable, untreatable, unpredictable severe seizure disorder! Can there be any more adjectives describing the chaos that plagues her? She has also been un-officially diagnosed with bi-polar syndrome and has frequent aggressive and violent episodes.
Please visit and subscribe to our YouTube channel for more information and to see how awesome Bethany continues to rise above all the many obstacles and challenges to create a happy, satisfying life for herself!
!!!! UPDATE 1/15/2013 !!!!
With the introduction of the new to the USA medication, Onfi added to her Trileptal and Depakote, Bethany has not had a seizure since 10/4/12!!! This is really a miracle indeed since several doctors told us that after twelve years of medication failures the chances that any medication would work was about 0%!!
We are grateful that the Lord has seen fit to give our precious daughter a reprieve from the brain attacks that have plagued her for so long! We are accepting this turn of events with fear and trepidation, however. We will always and forever be on guard because we know that this reprieve is not a cure and that the seizures could very well return when we least expect it! Call us faithless if you will, but we are being cautiously skeptical.
In October we were urged by Bethany’s doctor to seek a second opinion as to whether she would be a candidate for brain surgery as a treatment to cure her seizures. We are actually relieved that this second opinion was the same as the first. Her brain has too many focal points where the seizures start in areas of her brain that if tampered with would leave her more blinded than she already is and would permanently paralyze her right side. When Bethany was having seizures she always experienced Todd’s paralysis after every tonic clonic seizure. This is a temporary paralysis. We are actually glad that we will never need to worry about choosing a surgery that might make things worse or wonder if we should have chosen a surgery that might have greatly improved her life.
At first it seemed as if Bethany’s seizure free status was almost worse than when she was having seizures. At first her brain didn’t know how to handle not firing off seizures constantly and sort of shut down for a while. This was called Forced Normalization. Then she experience terrible medication side effects including double and blurry vision, a compromised balance, staggering, falling, insomnia, nausea, and stomach aches all of which made her feel as if and therefore believe that she was still having seizures!
However, I am happy to now report that with numerous medication dosage tweaks she is feeling much better MOST of the time, but not all the time. She is less lethargic and enjoying her life again…MOST of the time! She is a little more active and interested in doing school work, learning new self help skills, playing games, learning new words, talking, singing, being silly, being sociable, and going places!! I can’t really complain too much, though we are slightly disappointed that her autistic and bi-polar characteristics and behavior issues did not also decrease with the cessation of seizures. For more details about this click here. This is an exciting time for all of us!! We are so thankful for this blessed time in Bethany’s life!!! This is our new, new normal!!
Sadly, Bethany has been showing symptoms of having seizure clusters again. We are seeing simple partial clusters. Thankfully they are not as debilitating as the tonic clonic clusters that she previously experienced. We are disappointed in this development, but we are also hopeful that with a medication tweak or two we will get the seizure monster back under control once again.
Bethany has been suffering with seizures and medication side effects again and sadly, they are interfering with her activities and happiness. They are once again negatively affecting her quality of life.
Everyone PLEASE contact your legislators with Bethany’s Story. We are desperately trying to get access to medical marijuana for her.
Bethany has been suffering with debilitating seizures and/or medication side effects for most of her life, ever since she acquired a brain injury during brain surgery to remove a brain tumor when she was only two years old. All we want is for her to have a happy and healthy life. All we want is for her to have the opportunity to see if medical marijuana will help.
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