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Kevin and Tara are praying for your love and support while we raise money to help pay for our 10 year old son Wesley's brain surgery.
Have you ever loved something so much that your heart literally aches? Parenthood often brings that kind of love forth, the kind where you would protect them from anything, you would fight any battle for them and if it required you would lay your life down for them. Sometimes you can’t, sometimes things are out of your control and the cause is just simply bigger than yourselves. Bigger than what you can do, a battle you cannot fight alone and laying down your life would simply solve nothing. That someone and that cause for us is our 10 year old son Wesley. For those of you who know him, you can relate to what we are about to share and for those of you who do not, we hope that someday you get the opportunity to know him. He is funny, sweet and oh so tenacious. When he is passionate about something it is hard to argue because he generally knows what he is talking about, he is full of life and has a deep soul about him that makes him wise beyond his years. Wesley was born with a patch of blonde in his hair and we have always told him this is where he was “Kissed by an Angel.” That is why we felt it was appropriate to name his story and his journey “Kissed by an Angel.”
When you look at Wesley, it is hard to believe that he has an arachnoid cyst on the right side of his brain the size of a softball. It is hard to believe that his life is in any danger. To think that this could be the last Christmas we celebrate, the last birthday cake we buy, the last kiss we give and the last time that we drop him off at the bus stop is simply unfathomable. Yes, the picture portrays a normal, happy 10 year old little boy, but the reality is just not that.
When Wesley was 7 months old we found the cyst during an incidental CT Scan. The first stop on the journey was Children’s Hospital where we were assigned a neurosurgeon. This is where we got our first exposure and the “typical” options for treatment. We were told, a shunt was the best option available. A shunt is a tube that is placed in the cyst and drains the excess cerebral spinal fluid into another cavity of the body. The neurosurgeon was so non chalant to the point that it made our knees weak and our stomachs turn, when he explained to us that Wesley would have to at a minimum have 3 surgeries. One that “generally never works,” placing the shunt from the cyst to the left ventricle of the brain, if that didn’t work, he would place a shunt from the cyst into his stomach and then as he grew he would have to have yet another surgery that would make the tube longer because he would eventually grow out of it. You can image our horror when this is what our research found about shunts:
- The shunt could drain to fast, leaving him with not enough Cerebral Spinal Fluid (CSF)
- The shunt could drain not fast enough, which would result in the cyst remaining the size it is and continuing to grow
- The shunt could disengage and fracture, causing it to malfunction
- The shunt can get infected, the body can reject it and it can cause meningitis
- The shunt can get clogged and back up CSF fluid into the brain
- Multiple surgeries are not uncommon with shunts and they only have a 30% success rate
The list is staggering and if you read about any of the results of the above happening it is absolutely terrifying. We have watched utube videos of children with shunts and how ill they became if they malfunction or become infected.
The more research we did, the more convinced we became, we had to find another alternative. We got on blogs, we spoke to parents who had experienced the same things with their kids, we did more research, and we burned the midnight oil. We would stop at NOTHING. We had to know that if the shunt was indeed the best option, that we exhausted every option possible and that it was the best it would get.
That is how we found Dr. Shahinian with the Skull Base Institute. In 2006 we had a phone consultation with him and he assured us that he could remove the cyst and that Wesley would go on to live a normal life. Unbelievable, right!? Especially after everything else we had seen and heard about shunts being the most common treatment. The information that we had received up to this point from Wesley's neurosurgeon at Children's Hospital had always assured us, these things hardly ever cause issues, the size of the cyst doesn't matter and we seldom have to operate on these things.
Dr. Shahinian is one of the few surgeons in the world that perform this type of non-invasive surgery. There would be one surgery, one small incision in his eyebrow (no open brain surgery), the hospital stay would be 2 days and he would be back to performing normal activities in a week, provided there were no complications. WE DID IT, we found the alternate route that made the best sense for Wesley, but we hoped that we would never have to take it. Especially since Wesley was not having symptoms and the cyst was not life threatening at the time.
On August 30th, 2013 our world came to a screeching halt. It is as if everyone’s life around us kept moving on and ours somehow stopped. We became bystanders to our own life. The things that once created joy, somehow lost their luster and it has become a fight many days to stay positive and to even get out of bed. The news: Wesley’s neurosurgeon told us that due to the size of Wesley’s cyst it was starting to collapse the right ventricle of his brain. As the cyst continues to grow it would create a condition known as hydrocephalus, also known as “water on the brain.” The cause of hydrocephalus is a blockage of the Cerebral Spinal Fluid preventing it from being able to flow freely through the ventricles of the brain. As if the shunt was scary, here is what we found out about hydrocephalus and the symptoms that intercranial pressure creates:
- Rapid growth of the head, skull deformation
- Uncontrolled vomiting
- Severe headaches
- Blurred vision, double vision, blindness (since the pressure is behind Wesley’s right eye)
- Personality changes
- Urinary Incontinence
- Stroke & Paralysis (Due to the pressure that the cyst is causing on the brain)
- DEATH (now the condition becomes life threatening)
It was clear, surgery was now imperative. We sat Wesley down and told him that he was going to have to have a brain operation. We fully expected him to ask questions, like will I die, what will happen to me, but he was quite for a minute and then he asked a questions that we didn’t expect (remember, we said he was an old soul of sorts), he said “Will I be disabled?” Wow, how do you answer that? We explained that yes if the cyst was left untreated it could cause severe developmental issues. First he was stoic and then he cried. How do you tell your child that they may not be able to enjoy all the things they love... Football (he loves the New York Giants), dirtbikes (he loves Ryan Villapoto), running with his dachsund Riley and playing xbox with his friends. He then asked, “Will they put me to sleep?” That was it, he hasn’t said much since, but he has absorbed and watched as we have started to fundraise and prepare. Whew, one major obstacle down.
Another to go… can you imagine how distraught we were when we found out that his insurance provided NO benefits that would cover the surgery. We were SHOCKED. We have spent hours and days on the phone now researching a separate set of issues. How do we afford brain surgery, what policies if any are available (there are none). There are no PPO plans available through the health care exchange (a.k.a. Obamacare) with out of network benefits that are in network to the hospital where the surgery will be performed (We have to have the PPO plan with out of network benefits that is in network to the hospital). Due to his pre-existing condition, individual health care is out of the option. Tara's job does not have a group plan. Kevin's does however it is out of network to the hospital where the operation will be performed.
Insurance is insurance, right? Unfortunately, not. If we get a plan that has PPO with out of network benefits but the hospital is not in network to the carrier, we will be balanced billed upwards in the range of $500,000 for services that the insurance would not cover. That is why the team of Doctor's and the hospital came up with a discounted "cash" option (when I say option, I mean, they have made it so that it is the 'only" option). The surgery has to be paid for in full before the hospital & doctor will agree to operate, no exceptions. Even if symptoms occur and even if it is life threatening. If we are blessed with finding the specific plan we need, we still have to meet the out of pocket deductible and we have to pay the doctors fees before they will operate. Wesley is scheduled to have the surgery in June of 2014, unless he begins to have symptoms and if he does we will need to have the surgery sooner. We are working feverishly to make it happen.
We pulled our resources, set aside our savings, called the 401K administrator, called the realtor. What do you mean we still don’t have enough… Let me tell you if we could turn the pile of tears that we have cried into dollar bills, this issue would not be an issue at all.
We realized through a lot of soul searching this cause is bigger than us and with God's divine wisdom, we have to ask family, friends, and strangers to help. That is why we are here. We know that funds are tight for everyone and so many of us are living paycheck to paycheck. We understand, we wouldn't be asking if it wasn't important. Sometimes we are called to serve for a cause, this is definitely one that we want to be a part of and we are calling on you to take this journey with us. If you are able to give, we graciously ask that you please choose to give to Wesley’s cause. If money is not something you can give and you would still like to make a difference in his life, we will be hosting fundraisers and will need people to volunteer their time, auction items and to just be there to support. A hug, encouraging words and a prayer are also very meaningful, we need those too! Thank you for your time and your support. With lots of love,
Wesley’s Mom and Dad,
Tara & Kevin
**Any gifts raised will be used for medical bills and travel fees for the family while surgery is performed. If we raise more money than Wesley needs, we will pay the funds forward to B.A.B.Y Foundation or a child in need of a medical treatment.