In an everyday or not so everyday life situation, do you often ask yourself, "Why Me?" This same question, over the past 10 years I have often asked but not so much for me, but for my son. What you are about to read on my blog, is what the past ten years have been like with my son, my family and our hopes for the future in struggling with his diseases.
If you don't already know, my name is Lori, and I am the mother of four wonderful children. Robert 22, Karissa 21, Luke 17 and Rocky 16. I have been married for 23 1/2 years to my husband Bob. For our first 14 years of marriage, it was a dream come true. We had our home and four beautiful and healthy children. I would say the only thing we didn't have was that white picket fence surrounding our yard.
In the spring of 2001, our lives changed when illness strikes, almost taking the life of my youngest, Rocky. This is by far, the worst fear a mother could ever imagine. Not knowing what's going on with your child.....knowing that specialized doctors are stumped and not knowing if tomorrow there will be life.
Let me take you back to when Rocky was 6 years old. A perfectly normal child until he begins to complain of pains in his legs as he struggles to walk. He walks on his tip-toes sluggishly and limping immensely barely making one step after the other. I begin to comfort him by massaging his legs and as I touch them, he feels even greater pain. With this, he also complains of a severe headache. Not understanding why his legs are so painful, and with the headache, I call his pediatrician.
The next day we go visit the doctor. He explains that Rocky probably pulled some muscles in his legs, and as for the headache, well, there is quite a flu going around and one main symptom of this influenza is that of a severe headache. We leave the doctor's office with instructions to give Tylenol. I began immediately with the Tylenol and followed with round the clock doses as prescribed.
A week goes by with continually giving Rocky the doses of Tylenol, but yet, his headaches are even more severe where he begins to vomit foam from his nose and mouth. His legs seem to have subsided a bit, but that could be because for this past week, his headaches have become worse with the vomiting, and he's now starting to become lethargic. I phone the pediatrician once again and the doctor explains, "This is a really bad flu, he'll just need to wait it out."
At this point, I am feeling this isn't normal, vomiting foam! This is my fourth child and I have been through many flues with my children and this was not the flu! The doctor insist that it is a flu virus and to continue with the Tylenol. The headaches were so painful, that I would make warm compresses out of a washcloth and run it under warm tap water and place in a sandwich baggie and place it on his head. Rocky would come up to me and say "Mommy, rock me." Which I would, only to have two minutes pass by and he say "I need to lay down." to which I would carry him to the couch. After a few minutes of lying on the couch, he'd look at me and say "mommy, rock me". This cycle continued for two more days. Every night I would lay him in bed with me, and continuously warm up his wash rag through the night and try and comfort him to no avail the pain still exist along with the vomiting of foam. Before my eyes, my son was withering away. Two more days pass, and Rocky says to me, "Mommy, I am so sick of this, I cannot stand seeing two of everything". I was floored by this statement. He hadn't mentioned this to me at all in the past two days that his vision is now viewing double, and only now he feels it's bad enough to say he's had enough of it! Can you only imagine? As you continue to read my blog, you will not believe what the pain levels were and for him to just now complain is truly a strength of a child that is beyond believable.
After him telling me of seeing double, again, I call the doctor, he asks me over the phone to give him a visual fields test. I immediately refused over the phone and told the doctor I will be up in 5 minutes. This child needs to be seen! I hung up the phone, put a coat on my son, and carried him out to the car.
We arrive at the doctors, and he takes one look at Rocky and realizes how he has diminished over the past week since he last saw him. He's lost about 10 pounds, his color is terrible and he at this point, the only way he can look up in to the doctor's eyes is to physically hold his head with both hands cupped under his chin to support his head.
There is silence in the exam room. I could see on the doctor's face that there is something definitely wrong and it's not the flu. The doctor now begins to look in Rocky's eyes...The doctor takes his little eye tool with the flash light attached, he looks in one of Rocky's eyes and it seemed like eternity as he studies this eye, only to move over to the other eye and repeats the long process. He goes back to the first eye, and again to the other. The doctor turns to me and says "I believe your son has a condition called Papiladema. My first thought was, OK, give him a pill and fix it. But I knew it wasn't going to be a quick fix as I wished, so I asked in fear, what is Papiladema? The doctor looks me dead in the eye and said: "Papiladema only occurs in two cases. One is with a brain tumor the other would be Spinal Meningitis.
The doctor proceeds to leave the room and I am left in the exam room with Rocky laying on the exam table as i am in total shock...thinking, no this can't be!!! A few minutes later, the pediatrician returns and tells me I need to see a eye specialist to confirm this diagnoses. He had an appointment arranged for me to see the top eye specialist in our county and that I was to meet him at 7:00 AM the next morning (Saturday).
Saturday morning arrives and my husband takes my son's lifeless body and carries it to the car, while my daughter (Rocky's sister) cradles his body in the back seat. The specialist is waiting for us and takes Rocky immediately into the exam room. Again, the same process, silence fills the air as the eye specialist moves from one eye to the next and back and forth. The eye specialist turns to me and says, "I have to confirm your pediatrician's diagnoses, he does have Papiladema, and it's approaching the 4th stage. Of course, my question is, what is Papiladema hoping that the specialist would have better knowledge and now how to fix it as soon as possible?
Papiladema (and I am not sure if the spelling is correct) is a condition that occurs when there is pressure/fluid on the brain. The fluid is so massive, that it's basically blowing up the optic nerves of the brain. Your optic nerve should be that of a perfectly round disc shape. The doctor explained to me that Rocky's optic nerves were that of a thin football shape. Papiladema has 4 stages. At stage 4, it's irreversible and one goes blind.
The question lies, what is causing this pressure? Is it a brain tumor? Is it Spinal Meningitis? Is it something else? The eye specialist didn't know what to do with us, so he asked us to wait in the lobby. My husband took Rocky's lifeless body out to the car, while my daughter (who was 10 at the time) stayed with me and walked the floors. The doctor returns and said that he did speak with my pediatrician and he ask that we go home, and that he is going to make arrangements at Todd's Children's Hospital (Youngstown, Ohio) and for us to wait for his call.
We received his call about a half hour after we arrived home, and instructions were given. The pediatrician even offered to drive us to the hospital (knowing both myself and husband were emotionally upset). We refused the offer and packed everything up and left for the children's hospital.
Please continue on to Phase Two
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