Thank you for visiting Jon Jon’s website. We appreciate you taking the time to do so. I am Jon Jon’s Dad, Big Jon, and I just wanted to start a blog and use it to tell you about Jon Jon’s Journey up to this date. I’m going to give you the full scoop here and it’ll be a bit long because he has been through quite a bit since this has all started, so bear with me and read it, it’ll answer a lot of questions about how this all started and how we got to where we are now. I am also going to tell you what we are planning for the future for Jon’s follow up care at this point. This whole thing started in mid-October. Jon was watching TV and said that he had double vision, but it only lasted for about a minute and never happened again. On Halloween (my 40th birthday) we had a great day and a great night of trick-or-treating. This was the first year that Jon was able to really keep up and go futher than we had the previous years. The next day Jon went to school and when he came home he said that he went to the Nurses Office because his “eyeballs” hurt. He was standing in the bathroom and looking at me out of the corner of his eye and I had noticed that his Left eye was not tracking the same as the right. I mentioned it to my wife, Anne, and we both looked at him but it seemed fine. The next day, Friday, Nov 2nd, he went to school and I went to work, like any other day. Around Noon Anne called me in a little bit of a panic. The school had called and Jon was in the nurses office because his left eye was turned in completely toward his nose and was not moving at all. This was the start of our nightmare.
Anne called the pediatrician to try to get in to see her. Instead she referred us to The Fichte Eye Center and their pediatric eye specialist, Dr. Thomas Elmer. We got in to see him around 2 p.m. and the entire staff were totally wonderful and I credit them with saving Jon Jon’s life for their cautious steps they took to make sure we followed up with a neurologist. All of Jon’s eye exam’s were, and still are, completely normal with 20/20 vision. It was just that his left eye was turned in.
Dr. Elmer evaluated him and then referred us to The Dent Neurology Clinic where we met one of our true Angels on this planet, Dr. Aleksander Rovner. THANK GOD for him and his precaution, otherwise Jon may not be here now, or if he was, he’d be incapacitated. I’ll explain that part in brief later. Dr. Rovner went through a full neurologic exam and ordered a CT Scan of his eye sockets and sinuses, etc. which turned out to be perfectly normal. Everyone was thinking that this may just be a “lazy eye” which can easily be corrected by surgery, but Dr. Rovner and his sixth sense didn’t feel real confident that this was the case, so he ordered Jon Jon to have a complete MRI of his head and neck. The MRI was scheduled for a month later on December 3rd.
In the mean time we decided to go for a second opinion to another eye specialist. This specialist was at Children’s Hospital and he had taken care of our daughter when she was born 3 months premature back in 2003 and he is supposed to be the Pediatric Eye Guru in Western New York. I will not mention his name because I don’t want to tarnish his reputation. He is an excellent doctor, but had we listened to him things with Jon would be much different now. Dr. Rovner had tentatively diagnosed Jon with what is called “6th Nerve syndrome”. Basically it is the nerve in the eye that controls the lateral movement. When we went to the 2nd specialist he said that diagnosis was incorrect and that ther is NOTHING CONSISTENT WITH A 6th NERVE SYNDROME. He was fairly insistent that the CT Scan was a waste of time and that we should NOT EVEN BOTHER with an MRI because this is just a simple lazy eye, just “Bread and Butter Stuff” he said. He was very arrogant and even said to us that if Jon does have the MRI we’ll realize that he was right all along and it was just a big waste of time.
As November went on we strongly considered not doing the MRI because the Eye Guru was positive that it was JUST a Lazy Eye. Obviously, we now wish that he was right! Jon wasn’t having any new symptoms and he was feeling pretty good and we didn’t want to put him through or expose him to anything needlessly. That was until around Dec 1st when Jon started getting severe headaches that just suddenly started and they were incapacitating to him. They usually onset when he was running around or when he got upset. We relayed this to the Eye Guru who said “Of course he’s going to get headaches, walk around with your eyes crossed and you’ll get a headache too”, but these were different than the standard headache. They literally came on like the flick of a switch, he’d be running around laughing and playing, then he’d drop to the ground hysterical with pain. A couple of times he couldn’t sit up to eat dinner. He’d get up, take a bite of food and lay back down to chew and swallow it. Also, when he had them he would walk with his head tilted backwards and his shoulders tilted back to ease the pain. Even after telling this to the Eye Guru he said the MRI is still a waste, but he’ll go the path of least resistence and let the parents do what they want if it makes them feel better, but we’ll realize it was a big waste of time and he was right all along after it’s done. Obviously, Dr. Rovner did not agree with the Eye Guru and still wanted Jon Jon to have the MRI. The insurance company approved it and we had decided once the headaches began that he was having it!
On Dec 3rd we went to The Dent Clinic and Jon had the MRI. It only took about 20 mins and it was done. Jon Jon held nice and still the entire time and was great for it, like he has been for everything that has been done so far. It was a terrible day outside with blizzard-like conditions. About 10 minutes after it was done they told us to go up to the Dr.’s office so he could come in and discuss the results with us. We already had an appointment scheduled in 2 days to come back for the results, so we were a little concerned that the doctor was going to drive a half hour back to the office in that weather to talk to us.
We went up to the office and waited about an hour for him to return. In the meantime his nurse, Connie, came out and sat with Jon Jon and talked about Christmas and what Santa was bringing him and they sung some Christmas carols. She was and still is an awesome person. Dr. Rovner came in and brought us back to his office and everything is a bit of a blur there as you can imagine. He pulled up the MRI on his computer and showed us exactly what and where it was. He told us that there is a tumor INSIDE of Jon Jon’s brainstem. It is pressing on his the “6TH NERVE” which is why his left eye is turned in. I remember the color draining out of Anne’s face and she nearly passed out. I remember just standing at the computer staring at this scan of my beautiful boys head in total disbelief. How could this be happening to our perfect little guy, or little smiling angel. The MRI must be wrong, the Eye Guru said that this was just a simple lazy eye, bread and butter stuff that can be corrected with a simple surgery, so this has to be the wrong scan or something!!
Dr. Rovner was so compassionate and so kind to us and really took the time to explain to us what this meant. He made some phone calls and sent us directly to Women and Children’s Hospital of Buffalo where we met another group of angels. In the ER we saw Dr. Michelle Penque. I was good friends with her, as we graduated from high school together. I felt better knowing we had someone watching out for Jon Jon until we went upstairs for admission. Everyone in the ER was fantastic and compassionate and caring. They obviously knew what was going on better then we did at this point, but they didn’t let it show on their faces. They are all True professionals and I always knew that from my dealings with them on a business level being a Paramedic and bringing them patients for the last 22 years.
After about 2 hours Jon was admitted to the 9th floor and started on IV steroids. The nurses up there were also true caring and compassionate professionals and made us feel as best as we could for as totally frightened as we were. Anne and I slept in the room with Jon Jon over night and Anne’s Mom stayed at our house with Jon’s little sister Claire. Jon Jon received a few more steroid injections throughout the night and early the next morning the specialists started coming in. We saw a neuro surgeon, a neuro oncologist, and several others that I can’t even remember. Ultimately we saw our current angel, Dr. Lorna Fitzpatrick. She told us the final diagnosis of the Intrinsic Pontillar Glioma and what the care plan was going to be. She said she would discuss the prognosis with us only once at the beginning and then no more so it doesn’t take away our focus on getting Jon Jon better. Besides, nothing is a guarantee when it comes to cancer or medicine in general. Jon was put on the steroids orally and we were sent home. He has not had a single headache since starting the steroids although he did have some interesting side-effects from them. We were scheduled to see Dr. Fitzpatrick in her office later in the week to set up the follow up care at Roswell Park Cancer Institute. Before we were discharged Dr. Rovner caaled me on the phone from his home to see how Jon felt and how everything was going. He was pleased that we saw all of the specialists right away which is why he sent us to be admitted at Children’s otherwise it would’ve taken a week at least to meet with all of the specialists and get the ball rolling on Jon’s care. Jon Jon’s tumor is called Intrinsic because it is actually wrapped up INSIDE of the brainstem which means it is inoperable. They couldn’t even do a biopsy on it because of all of the delicate nerve tissue around it. The brainstem is basically the main nerve center of the human body. It is responsible for ALL of the vegetative functions that our body does for itself to survive. It regulates the respiratory drive, our body temperature, the heart rate and all of the other involuntary functions. Jon Jon’s tumor is also by his facial nerves so there is concern about any damage to those. That would cause him to appear as if he had a stroke should they be damaged. Also the nerves for his eyes and ears are right there, so blindness or deafness is a concern. This explains why it is such a fast and fatal tumor. there isn’t much room in there for it to grow so it starts pushing on nerves and causes that part of the body to malfunction or shut down altogether. We were fortunate that it began with his eye and no where else and it still has not progressed anywhere or affected anything else to this point.
We saw Dr. Fitz in her office and she referred us to RPCI for Radiation treatment and chemotherapy. I remember walking into Roswell, my Mother had come with us for support, and having all of these fellings come back from a couple years before when I went there on several occasions with my father. He had lymphoma and passed away 2 days before Father’s Day in 2004. As soon as we got in the lobby I started crying and continued until we had left. Thank God Anne was able to keep it together. I could vividly remember when I went there with my Dad 5 years ago. We were sitting in the radiology department with other patients and I saw a little boy that was about Jon’s age sitting with his mother. He was obviously a patient because he had that pale color to him and his hair was all thin and wiry like patients get when they’re on IV chemo. I remember getting a lump in my throat and tears welling up in my eyes. I know I gave his Mom that same look of sympathy and compassion that Anne and I see so frequently now. I remember just wanting to go over and pick that child up, hold him, and tell him everything will be okay. I thought to myself that day how horrible it must be for his parent’s and I hope that I NEVER experience that. Jon Jon was barely 2 years old and I couldn’t bear the thought of something like that happening to my baby. Who would’ve thought 4 years later…..
We went down to the radiology department and met some of the most wonderful people in this world there. We first met with a PA named Kathy McLaughlin. I immediately felt a bit better because I had known Kathy for many many years as she used to be an ER nurse at our local hospital up until about 2 or 3 years ago. I had no idea that she was working here now and it was a very pleasant surprise. Someone I know and trust would be involved in taking care of our son. We also met 2 doctors, Dr. Prasad the neuro-oncologist and his assistant Dr. Killian Salerno. They are just such great people there and Jon just loves them.
We met them and they discussed Jon Jon’s case with us and what the treatment plan is going to be and then sent us home. We went back a few days later and did a “dry run” for Jon Jon’s Radiation Therapy and made him his cool Face Mask that he wears when he has his treatments. I’m going to post some pics of Jon that I took at his various tests with my cell phone once I download them. One of them is from when his mask is being made. The entire radiology staff at RPCI just totally ROCK! They love to see Jon Jon when he arrives and they make him, and us, feel at total ease. We will truly miss seeing them when he is finally done with his treatments next week
This pretty much brings us to the current day. To this point he has gone through all of his treatments without a hitch and he only has 5 more to go. He is feeling pretty good, but he gets tired earlier in the day then he used to. He has gone to school every day for the past 3 weeks which is pretty amazing considering all of the things his body has been going through. We are getting a little worried now that the radiation is coming to an end because we know it is something that is actively treating the tumor and keeping it in check. He is receiving his alotted lifetime dose of radiation so this will never be a treatment option for him again and the chemo that he is on (Temodar) is a trial and not even guaranteed to work.
For now we are considering a few options and need to talk to his doctors for their opinion as well. The first thing we are considering is a clinic in Houston, Texas called the Burzynski Clinic. They have a long history of treating cancer and this type of tumor in particular with some pretty good succes. Unfortunately most health insurances do not pay for it and the entire year of treatment will cost approximately $100,000 not including our flights, a rental car and about one month of lodging while we are there. It is all on an outpatient basis, the first month we stay in Houston and then the rest of the treatment is done at home with some trips back down there for check ups. If you are interested in learning more about this clinic go to www.cancermed.com and look at it.
We are also going to call some other leading cancer hospitals across the country and across the world to find out if they offer something different or more progressive. We refuse to accept this as a death sentence for our son and we will go to the ends of the earth to get him well, as I’m sure any parent would do for their child.
By the way, after a couple of weeks the Eye Guru called me to express his surprise at the results of the MRI. He was “shocked” that there was a tumor. He didn’t apologize directly, but he did express it as much as his ego would allow him to. I do give him credit for calling us though, that does take a lot of courage after making such a glaring error. I got the impression that he learned a pretty big lesson from this and that he will not be so quick to poo poo another anxious parent. There was no harm done and if it keeps another child from a mis-diagnosis by him, like this one, then it was worth it. He asked us to come and see him after a month of treatments so we can monitor the progress of his eye with the radiation. Needless to say, we have not gone back to him. If we need to follow up with anyone regarding Jon Jon’s eye, we’ll call Dr. Elmer at Fichte.
I hope you understand why the fundraiser is so important for us! It will enable us to search for treatments we may not otherwise be able to afford. Thank god for my good friends Brett Rider and Mike Baumgartner. A couple of days after Jon Jon was diagnosed Brett approached me about doing a fundraiser. I was hesitant at first because we had health insurance and I was able to alter my work schedule (thanks to my awesome Supervisors and wonderful co-workers) to be able to go to Jon Jon’s treatments at Roswell so I didn’t think we’d need any help. We had so many people asking us what they could do for us, but we really didn’t know so I talked to Anne and we decided to let them do a fundraiser. I called Brett and gave him the go ahead and he hooked up with Mike and it took right off from there! It seemed to be the easiest way to allow people to help us and we didn’t know what the future held for us and what options we may have. Wow! We had no idea how expensive this was going to become. With daily trips to Roswell for Jon’s treatments and co-pays and diet supplements and prescriptions the bills added up fast. Anne hadn’t been able to go to work as often as she needed and she had to hire and pay people to work for her, so that added up too. Then we found out about this clinic and some other options that we might do and realized how expensive they will be, so we are desperately going to need this help.
Once the word got out about Jon Jon’s cancer, things really took off and people couldn’t get on board fast enough to help us out. If you ever become cynical about your community or the human race in general, call me. I’ll tell you about a wonderful group of family, friends, and my community and how quickly they rallied around us with love and support. When it involves your sick child, you really get to see the true colors of human beings. We have met so many wonderful people during this brief journey that I can’t even begin list all of them here. I also know we are going to meet several more as we continue on. We are so grateful to all of them for their kindness and love shown for all of us and I’m not just referring to the health care professionals that have cared for Jon Jon. There are also so many people that have given him gifts and other done amazing things. They will never really understand how much we appreciate them and how much it means to us that they did these things that made Jon Jon smile or feel happy! Absolutely no words can truly express how we feel about it, it is just not possible at all to even try. Anne and I want to thank every single one of these people for helping us to save Jon Jon’s life! How can you ever repay someone for that? I’m not sure that we can, but we will spend the rest of our lives on this planet trying to do so!
Well you are now pretty much up to date with everything that we have been experiencing. I will try my best to keep this up to date as possible and hopefully Anne will get on and give you some mother’s perspective on this whole journey, I’m sure it’s a lot different than a Dad’s. Please keep your prayers and good thoughts coming for Jon Jon! We believe they work and we do believe miracles happen! If you are able to come to the fundraiser and meet Jon Jon and the rest of my family,please do! Though, I must warn you, Jon Jon will steal your heart! He’s just that type of kid! Plus it’s sure to be quite the event!
Thank you for taking the time to read this!
God Bless All of You!!
Jon, Anne, Jon Jon, and Claire
Monday, January 21, 2008
Hello Everyone! Thanks for visiting Jon Jon’s webpage and blog. Please bare with us as this website gets up and running. We have a few plans up our sleeves so please be patient as we update the website from it’s beginning stages. We hope that you will all join us on March 29th for the Benefit. (www.jonjonsjourney.com) If you would like to help or donate, please email us at firstname.lastname@example.org As for this blog, check back for updates on Benefit information, and Jon Jon and the Cinelli Family on this journey. We are hoping to have a guestbook up and running shortly so that you can send your well wishes to the family.
Posted by Bill Fleming at 8:27 AM