Thursday, December 4, 2008
It has been almost 3 weeks since Jon went to heaven and we are trying to adjust to life without him if possible. It is a terrible void in our lives and we feel a bit like lost souls. We spent the past year of Jon's life just being with him, enjoying him and caring for him but, in a way we grieved for him everyday for all he had to lose and go through. Claire is doing well and starting to get excited about Christmas, it is hard to be sad around her because when we are feeling low she will say something so funny that we have to laugh she truly keeps us going. The social worker and child life specialist and Jon's nurse from Essential Kids have come to the house to help Claire express her feelings and understand what has happened. We have greatly appreciated their help as it is so hard to explain to a 5 yr. old the concept of death. She has made some interesting comments about wishing Jon had never gotten sick and wishing he could be the way he was when he was born.
I just wanted to take a minute to thank everyone for being with us at Jon's life celebrations, all the cards, food and kind thoughts and prayers it has meant a lot to us. We are thankful for having 7 of the happiest, and most fun years with such a special little guy and are glad you all got to share some of that joy with us.
I am apologizing now if in the future I drive any friends or acquaintances a little crazy with my emails or pleas to raise awareness of childhood cancer. It is shocking how little funding for research there is especially the DIPG kids. It is thought that between 15-20 kids a month die of DIPG and in over 30 years the treatment of DIPG has changed very little if at all. Take a minute to view some of these sites and join People Against Childhood Cancer and sign the petition it only takes a few minutes . It is pioneered by a man originally from WNY, I believe Orch Park who now lives down south and lost his son AJ to cancer. He has started a great movement to raise awarenes and funding money for kids cancer. http://curechildhoodcancer.ning.com http://icouldbeyourchild.org// http://www.thecurestartsnow.org/ these are all wonderful sites that are doing great things and sharing insights. Also Roswell and the Cure Starts Now have christmas cards designed by kids who have or still are battling cancer and the proceeds benefit research.
We will be travelling the week before Christmas with Claire to Disney, we thought it would be nice to get away and spend some time with Claire and hopefully lift our spirits. We thought it would be fun to see Disney all decorated for Christmas.
We wish you all a very Merry Christmas and a very happy and healthy New Year, please stop and see us over the holidays.
Jon, Anne, and Claire
Monday, November 17, 2008
It is with a very sad and heavy heart that I write this.
Our little angel, was lifted up to be one of God's angels Sunday afternoon at 5:30 pm. His grandmas and all of his aunts and uncles spent the day at the house with us we all took turns cuddling and holding him and he passed very peacefully and gently surrounded by all of his family who loved him so very much.
Jon and I knew he was getting close to the end of his journey this past week as he had lost more function in his left arm and, was just tired and worn out with less smiles. Friday afternoon his home instructor , Mrs. Dunnigan came to the house to give him his lesson she was always amazed at how sharp he was with his work. His favorite, nurse Stacey came and drew blood and changed his picc line dressing and had a nice visit with him. Jon managed to feed himself lunch but by Fri. evening he had no appetite and could no longer move his hand and arm. This really seemed to crush his spirit as it was the last thing he could do for himself. He was a sharp little mind trapped in a body that would not move. Friday night he was restless and barely slept at all and had no appetite. On Saturday he ate nothing all he wanted was drinks, we visited grandma at the farm and hung out with Aunt Carrie and Aunt Julie at grandma's, he was just worn out his spirit seemed to be gone. Again Saturday night he did not sleep, he was anxious and could not settle enough to get some rest. On Sunday morning I got him up and moved into the hospital bed in our living room he was very thirsty but could no longer pull the liquid up in a straw so I let him sip drinks from a sippy cup. When he looked at me his eyes would flutter up and back and he was so anxious. I called nurse Stacey from Essential Care and she came right out to see him so she could give his doctor a good picutre of how he was doing . Stacey knew something was up when she walked in the door and said her usual "hey handsome" and got no smile or response. He asked to go to his room to lay in his own bed which he had not done in months as he slept with us every night. We took him back to his bed and got him all settled in and comfy and after conferring with his doctor it was decided to give Jon oxygen and Ativan to help him settle and be less anxious. Once he was given the Ativan he was much more relaxed and peaceful. All of the family and some close friends were called and we all took turns cuddling, talking and holding him he passed a few hours later very gently and peacefully.
We are so grateful that he was comfortable and in no pain and all of his dearest people were able to be with him. Though his life was short he brought so many people so much joy and laughter he was such a special kid . From the day he was born he was a people person,that connected with everybody he met and made a friend everywhere he went. He will be deeply missed by so many.
We will have more details on arrangements for Jon, he was transported to CHOB to have his tumor removed and donated to the NIH for a study being done on DIPG tumors, by Dr. Kathy Warren .
We will let you all know as soon as possible when his services will be.
Thank you all for holding us up through this battle and all of your kind words and prayers.
Thank you to nurse Stacey and the whole Essential Care crew for being such a great support, you are truly special people and I don't know how you do what you do.
Wednesday, November 5, 2008
This is just a quick post of some Halloween Pics of the kids in their costumes for all of you to enjoy, so......enjoy! There are 9 pictures here. I was having difficulty with the blog while trying to post them so if you don't see all of them click on a pic and see if the others pop up.
Jon Jon in his Thomas Costume.
Monday, November 3, 2008
We had a busy week celebrating Halloween . Sunday before Halloween we went to a pumpkin carving party at our friends, the Reimers in Orchard Park and had a great time with their family as always. Wendy and Ashley had the house all decorated complete with spider webs and skeleton lights! Last Wednesday we went to a party sponsored by Essential Kids, they are the organization that coordinates the home nursing care for Jon. They have social workers, child life specialists and can help arrange OT, PT, speech help. The child life specialist, Beth and social worker, AnneMarie have come to our house and made pizzas and crafts with Jon and Claire. They both have enjoyed their time with these ladies.
On Friday Jon and I packed up Jon and headed off to Hamilton Elementary to march in the school's Halloween parade. All the children parades outside around the school in their costumes. Big Jon spent hours cutting and painting to make a wooden Thomas the Train that attached to his wheelchair with Jon in his engineer hat. Jon Jon marched with his kindergarten teachers from last year who are now Claire's teachers. Claire was dressed as a witch and marched with daddy and Jon Jon while I took pictures. Mrs. Kulikowski and Miss Marsha were kind enough to let us all participate in the class party afterwards. Jon Jon loved it and definitely was a hit in the parade , he loved seeing all of the teachers and staff. Everyone at Hamilton has been so kind and supportive of our whole family, it has touched us all.
Later Friday afternoon we had a group of family, friends and neighbors over for pizza and wings, Halloween is Big Jon's birthday so we had cake after trick or treating. JonJon and all of us had a great time walking the neighborhood. Uncle Roger, The Bothams, Orlowski's, Grandma Susie, Uncle Steve and Aunt Liz and "Izzy the bulldog all joined Claire, JonJon and mommy and daddy. Grandma Pat and Aunt Julie handed out candy for us. It was a great night and a lot of memories were made. Jon Jon even went back for a second round with daddy and uncle Roger after dropping off Claire and John, Jess and Emma! The neighbors all got a kick out of Jon's train wheelchair. It was a great night.
Jon is holding his own and is fairly stable . He is still going every week to Children's for infusions. A week or so ago Jon Jon had complained about back pain and it got to the point whenever we moved him he would start sobbing in pain. After discussing with his doctors he was sent for an MRI of his whole spine to make sure there were no fractures from the high doses of steroid or disease progressing to his spine. His MRI came back clear with no signs of tumor or fracture. That was a huge relief . We managed his pain with a low dose of Morphine and now after a week or so he is back has been good with no pain complaints or need for meds.
We are still struggling with the mediport site, the wound does not want to close. On Sunday, it looked like there was pus in it, so Jon's doctors told us to bring him in to the ER. Big Jon and Jon Jon set off. The site was re-cultured and blood was drawn and so far no infection has grown in the culture . They think it has some fungus in it and so now Jon is on an anti fungal oral and topical med.
People ask what they can do for us and I guess all that I can say is don't be afraid to call us or stop by the house. We all love company, especially little Jon. I know it is a hard thing for people to see and be around so we understand if there are those of you who can not.
Later I will post some web sites that raise awareness on this horrible disease and the need for more funding for pediatric cancer research. It is amazingly under researched.
Tuesday, October 14, 2008
Happy fall to all! We apologize for taking so long to update this, but there never seems to be enough time in the day to sit down at the computer and type one. Anne spends a lot of time online doing research and looking for updated or different therapies other DIPG kids and their families are trying. This will be a bit lengthy because it has been so long since we've updated it, so bear with it.
Jon is holding his own for now. He has been back on the steroids for a few months now and has gained about 35 pounds since. Unfortunately they aren't having the drastic effects like they did the first time he was on them. He hasn't had any headaches since originally being on them which is a great thing, but they really haven't resolved anything else. He is totally unable to walk or even stand for that matter. So we have to carry himeverywhere he wants or needs to, like the bathroom, bed, car, etc. He can't even sit up straight on his own, he needs to hold himself upright or get propped with pillows. In bed he is unable to roll over or re-position himself, so one of us sleeps with him every night so when he wakes up and needs to roll or whatever to get comfortable we do it for him. His right hand is mostly contracted, but he is still able to use it some. He is able to use his left hand, but his fine motor skills are gone. He has a hard time drawing or writing, which he loved to do, but he is able to color and feed himself fairly well.
Probably the toughest thing for us is that he is unable to speak. Because of where the tumor is, it is impingeing on many facial nerves including the nerves for his larynx and his mouth therefore he has great difficulty forming his words and projecting his voice. It is very frustrating for all because it takes so long for him to convey his thoughts to us most of the time. We miss hearing his voice terribly, but he still has a great giggle and laugh. Thanks to everyone that donated to his fundraiser, we just purchased a Dynavox voice computer for him to use. It is totally programmable to the individual user, His therapist, Lindsay, will be here tomorrow to help set it up for him. The unit costs about $8,000 new and is not covered by insurance at all. We hope to donate it to the Essential Kids Agency for other families that need one and cannot afford it. They are a home care agency that takes care of kids with illnesses similar to Jon's. It's basically a Hospice and Palliative Care for kids. They are absolutely wonderful people and we are glad to have them helping Jon.
The last couple of months of his care have been adventurous to say the least. Anne did a lot of research and she found a few therapies that other kids had limited success with so we thought we'd see about getting Jon on some. We started out with the trip to Duke U. as noted in a previous blog. He got approved to be given a regimen of 2 chemo drugs. They were Avastin and Irinotican. As previously stated in the last blog the concern with the Avastin is that it could cause a catastrophic brain hemmorhage, plus it inhibited healing. He ended up suffering a little of both. Also, the tumor had grown about a full centimeter over the course of one month. The tumor is aggessively growing and will most likely be fatal so we need to try something. The chemo can't be given thru an IV so Jon had to get a Med-port implanted under general anesthesia. This was done at Children's Hosp and that was an adventure in itself. We got to the hospital at 1 p.m. as his surgery was scheduled for 3 p.m. Jon didn't have any solid food since 8 p.m. the night before and onlly had clear liquid up until noon the day of the surgery. So we got up into the outpatient surgery and sat. We waited and waited and waited, the entire time Jon couldn't eat. If you've ever been around someone or have been on the steroid Decadron, you know how ravenous it makes the patient. Jon's day revolves around food. It's the first thing he talks about in the morning. He wants the menu for the day. Anyway, 6 p.m. rolls around and still no surgery. The Amb Surg department closed at 7 and we were still sitting and waiting. We FINALLY got him down for sugery at 9 p.m. To this day we still have not received an explanation for the delay. He got out of surgery at about 10 and were discharged to go home around 1 a.m. The kid was an absolute trooper and never really complained the entire time. He just thought about the meal he was going to enjoy afterwards.
So the Med-port got put in his left clavicular area and about 10 days later he received his first dose of the new chemo. After the first round of the Avastin they did another MRI. It showed that the bleeding inside of his tumor worsened a bit so we discontinued that. Now the Duke Doc said to let the suture heal about 3 weeks before receiveing the chemo, but the staff here felt there was no reason to wait and we agreed. We ran into a bunch of delays just getting the ball rolling on the new regimen and we wanted to get it going. Needless to say, the incision never closed completely at one end. He did start to get the Irinotican once a week. A couple of weeks ago I noticed another little pin hole in the center of the suture line and we had it looked at when we went for the next chemo. What was going to be our usual 3 hour visit for chemo turned into a week stay because his incision got terribly infected. He got admitted for IV antibiotics and had to go back into surgery to have the Medport taken out. Just before he got discharged they put a PICC line in his left arm for his chemo. On a great note, While he was in he had another MRI done and it showed that the tumor had not grown or changed a bit over the last 2 months so all of this nonsense was certainly well worth it. He is still getting the Irinotican once a week.
We realize with all of this stuff going on that we are extremely fortunate to still have him with us. On alot of the DIPG websites that Anne researches we see many children that aren't nearly as sick as Jon that have already died. Some have gotten like Jon and then died a few days later, so every day is a gift.
Not everything has been doom and gloom though! He celebrated his 7th birthday on October 11th and we weren't sure he was going to live to see that. WE had a fantastic birthday party for him and Claire(Sept. 28th is her birthday) at the farm in early October and our entire family and our friends were with us. We all had a blast! So we are very grateful for this! We are now looking forward to Halloween. Then we'll shoot for Thanksgiving,then Christmas and so on. We realize that every holiday we get to enjoy will more than likely be the last one with him him, so it's bittersweet to say the least, but we don't let that cloud our day.
In September we got a call from Robin at Carly's Club and we were asked if we would like to get picked up by a limo and taken to see the Buffalo Bills play the Oakland Raiders. Jon nor Claire had ever been to a game and while watching a pre-season game in late August Jon turned to me and said he'd like to go to a Bills game this year. Needless to say, we went! We rode in the lap of luxury and had great seats and enjoyed a great game. Thank you to Carly's Club and our host Shawn for taking us. We had a great time!!
Well that's about it for now. Jon and I are tickled that our Beloved Sabres season has begun! We put on our jersey's and plant ourselves in front of the tv for every game. So Go Sabres and Go Bills!!!
I'll try to update this sooner then I did this time.
Keep the good thoughts and prayers coming for him!! Thank you and God Bless!
Jon, Anne, Jon Jon and Claire
Tuesday, August 19, 2008
Sunday, August 10, 2008
Sorry we have not updated Jon's page in such a long time. We have been so hectic with doctor appts. and decisions that have weighed so heavy on us. After Jon's June MRI which showed progression of his tumor, Jon, JonJon and I traveled to Duke University to see Dr. Guruangan of their brain tumor clinic in Durham, NC. It was a very depressing trip for us as Dr. G told us in 30 years he has never seen anyone survive a DIPG tumor. Most kids die within 6-12 months and it is rare for a kid to live more than 18 months. The DIPG tumors are very resistant to Chemo and since they can not be biopsied it is hard to know which drugs could work. He did give us a road map of a treatment plan that has used with adults with different tumors but is still experimental in pediatrics. The plan involves "cocktailing" different chemo drugs the main ones being Avastin and Irinotecan alternating them in a 12 week cycle. The list of potential side effects are extremely frightening in addition to the usual chemo effects (nausea, diarrhea, nose bleeds, fatigue and poor blood counts). The Avastin can cause hypertension, protein in the urine, blood clots and brain bleeds . Jon and I have struggled with what to do, we don't want Jon's time on this earth to be spent feeling horrible.
We discussed with Jon's oncologist and Dr. Kathy Warren from the NIH who has seen Jon's scans and history and they both concurred that the Avastin and Irinotecan are the next logical step, if anything about this is logical. The hope would be to stabilize the tumor or slow it.
After much delay and frustration, (doctors out of the country) Jon Jon has had a mediport implanted at Children's of Buffalo . Aug 2nd he had another MRI showing even more progression, we figured that could be the case as Jon has had poor speech, balance and strength issues, drooling, and trouble swallowing. The poor little guy has choked several times so we have to be very careful that he takes small bites and chew thoroughly. On Aug. 6th we were back at Children's to see if the mediport was healed enough t0 begin infusions that day, it was and his port was accessed for the first time for blood draws. The nurse had a very hard time getting the needle in the right spot and that was very painful for Jon but he was his usual trooper self. We waited for 8 hours to see if we could have an infusion of Avastin only to be told by Dr. Fitzpatrick that his latest scan was reviewed again with the neuro surgeon and a tiny bleed was found within the tumor which we were told is not uncommon but the Avastin could put him at risk for a bigger one. We all decided to be cautious and not proceed with the infusion until Dr. Guruangan from Duke reviewed the latest scan but he is out of the country. Another Duke doctor said we should wait and monitor the bleed.
This Mon. we hope to hear if we can come in for the Irinotecan with maybe another drug combo. We feel so helpless and desperately want to get started on something!! Jon is getting weaker and needs help getting up stairs and in and out of the car, he can only walk a short distance. We keep hoping and praying that there has to be something to stabilize his tumor. We have asked Jon Jon how he feels about all he is going through and if he has questions but he does not have much to say. I think it has gotten to be a way of life and he just rolls with it . Jon's doctor arranged to have Essential Kids come in to our home and do physical therapy and draw blood and flush the port when it is accessed.
On a lighter note Jon has gotten to do some fun things this summer in small doses. Last Saturday he went to a Star Wars convention at the Summit Mall with Aunt Julie and Uncle Roger and daddy. He got autographed pics from the man who played Darth Vader and the man who played the ewoks and added some trinkets to his collection. Thank you to his aunt and uncle for making it happen. Uncle Roger got him started with his Star Wars obsession and they have enjoyed it together! Our family went to the St. Chris carnival and Jon managed to ride the Ferris wheel and go down the slide with Jon. Of course daddy won Claire and Jon some stuffed treasures! Claire and Jon went to paint pottery and to lunch with Uncle Steve while waiting for Aunt Elizabeth to get out of work they had a sleep over and Claire was treated to a manicure and pedicure done by Liz. I think we have a little diva in the making!
This past Thurs Jon Jon was able to ride the golf cart with Jon for a few holes, we will post some pics. Little Jon stayed a few extra days with me and my 3 sisters and his grandma Patsy in Syracuse at a horse show I was working. Our horse show family was happy to see him and he enjoyed being surrounded by some of his favorite people. Claire and Jon have been seasoned horse show attendees since they were infants.
Claire has been enjoying her summer in grandma Susie's pool and our giant Banzai water slide. Her favorite playmates, Jamie and Jacob come over and slide for hours and when they have had enough they go across the street to their house and do the trampoline and pool. She also has been going to Gleason's gymnastic camp 2 days a week in the am and loves it!
Well I think that catches everyone up to speed for now, we will keep you posted on what Jon's next treatment is and how he tolerates it.
We really cherish the strong support and prayers from our family and friends we are blessed. Please keep praying that Jon will see some stabilization and that we will make the right decisions for our dear sweet boy. He is so strong and brave with all he has been through he still smiles and giggles so easily!
Love, The Cinelli family
Saturday, June 14, 2008
I wish that this post was as good as the May Update. However, this is not the case. Jon Jon had his MRI on Friday just before the Bison's game. The results weren't as good as the original one. It appears as though the tumor has grown some and in a different direction. The good news is that it is not as big as it was when he was originally diagnosed. Like the doctor said after his first MRI, usually this type of tumor either stays the same size or it grows, so the fact that it is smaller than when originally diagnosed puts us ahead of the game. The bad news is that it has already affected him neurologically. He has a very slight facial droop that is barely noticeable but it is there. He also lost some of his fine motor skills in his right hand and holds his arm up next to his body.
The most noticable change is in his speech. Becuase the tumor is wrapped around his facial nerves, hence the turned in eye, it impinges on them and causes the changes we are seeing. He can barely form some of his words and it is sometimes difficult to understand what it is that he is saying. It is also difficult for him to speak loudly. I'm not sure if it is from the tumor pressing on nerves that affect the vocal chords too or what. He also chokes on some food and beverages on occasion so we have to watch him when he is ingesting anything.
We stopped many of his meds and put him back on the high dose steroids which seem to have improved some of the symptoms he is having. We need to address those things immediately before we try to treat the tumor again. We will put him back on the chemo Wednesday when we meet with the Oncologist and specialists again.
At this point we aren't sure of the other options or what we are going to do from here. We just ask that everyone keep sending good vibes and good thoughts and keep the prayers coming for him. We need a miracle and believe they can happen. We have to....
Thank you and God Bless!
Anne, Jon, Claire and Jon Jon
Saturday, May 17, 2008
Thursday, April 10, 2008
Tuesday, April 1, 2008
I will elaborate alot more in another blog once we settle down and this all sinks in for us! Anne and I sit here and look at all of the pictures from the event in total amazement and it leaves us overwhelmed and speechless. Once we compose ourselves and organize our thoughts we both will post again, but for the time being please know we are forever grateful to our friends, family and community for your magnificent showing of love and support to our son and our entire family!!
Thank you all from the bottom of our hearts!! We don't know what we will face in the future, but we realized after this weekend that we are not going throught this alone and we will perservere thanks to everbody's love and support!!
Jon, Anne, Jon Jon, and Claire
Wednesday, March 19, 2008
Tuesday, March 18, 2008
Guest Bartenders will be Mark & Missy Subjeck, Jim DeLacy and Ashley Reimers. All tip money collected will be donated to the Cinelli Family. It is a very nice place, Anne, Ashley, Kelsey and I have been there for dinner and they have a burger the size of a dinner plate that is awesome!!!(It can definitely be shared by 2-3 people) Encourage all your friends to come out for a fun night. Hope to see you all there.
Sunday, March 16, 2008
We went to see Dr. Fitzpatrick on Thursday as scheduled and the appointment went great. She was so excited about the MRI. She said that the tumor was originally about the size of a golf ball and had a litlle "finger" up in to Jon Jon's left brain hemisphere and after the radiation and chemo it is now about the size of a PEA OR SMALLER!!!! She said that she has NEVER seen such a drastic improvement in a tumor of this type ever!!
Of course, she had to keep us focused and said she doesn't know if this will change the ultimate outcome or prolong Jon Jon's life, but she'd like to think that it will and, of course so do we! She didn't have any idea what actually caused such a drastic response to the treatment so we are going to continue doing the same exact thing that we have been, except for the radiation. He had the lifetime dose already.
So we will do our part by continuing to give him his meds and supplements and we ask that all of you continue to your part by keeping the prayers and thoughts coming for him!! Like Dr. F said, let's enjoy this great news for a while!! We go for his next MRI in 3 months.
Next Wednesday we'll meet with Dr. Awner at Children's. He is a pediatric eye surgeon and is going to be the one to fix Jon Jon's eye. We'll find out if and when he can do it when we are there. 2 hours after that we'll meet with Dr. Duffner and Dr. Rozelle to discuss the MRI a bit further and also some things for follow up and future care options.
Speaking of that, he has been taken off the Decadron and has been put on a milder steroid which is for the physiologic changes that occured while on the Decadron. Hopefully that means some of the facial and abdominal puffiness will reduce. He lost about 6 pounds over the last month since his dose of the Decadron was significantly reduced.
That's about it for now. Enjoy the great word with us and please continue those prayers!!!
Wednesday, March 12, 2008
Just wanted to let everyone know that Jon Jon had his first MRI last week and we are supposed to see the doctors tomorrow for the results. However, Dr. Fitzpatrick just called me because she was pretty happy with the results and knew we were worried about tomorrow. Any way, she said the MRI looked "GREAT", even better than she anticipated it would look at this point!! Of course we know it is because of the wonderful people and the excellent medical care he has received from Children's and Roswell that has worked wonderfully, but we also believe it is because of everyones good thoughts and prayers, so keep them coming PLEASE!!!!
Thank you and GOD BLESS!!
Jon, Anne, Jon Jon, and Claire
Wednesday, February 27, 2008
First, let me thank you for visiting Jon Jon's website. I just want to update everybody as to Jon Jon's status as of today. He is doing very good so far. He has been done with his chemo and radiation since February 1st and seems to be back to himself as far as his stamina and energy. He is down to 1/4 mg of the Decadron in the a.m. and a 1/4 mg. in the p.m. so hopefully if he tolerates it as well as he has been he should be off of it within a couple of weeks. He will be put on a different type of steroid called Cortef. This is a much milder steroid and it is to assist with some of the physiologic changes that occured while on the Decadron. It should help to reduce his cheeks and abdominal swelling mainly.
He is scheduled for his first post-treatment MRI on March 7th. This is not a diagnostic one, it is just to take a look at everything so far after the tumor was radiated. They expect it to be swollen and nasty looking which is typical for the tumor at this point. His diagnostic MRI will be in mid-April and then we will know much more and be able to make more educated decisions about what we are going to do next.
The main thing is that he is feeling good right now and he has been feeling good for the past month or so. As a matter of fact, he has been in school everyday for the 3 weeks before the February vacation and and has been in this week as well. Like you've all heard me say a hundred times, as long as he feels good we feel good!
We recently took our trip to Florida and spent a couple days in Disney and a day at Universal Studios thanks to our family friend Don Shaver and his church down in Orlando. We had a blast and I'll be posting some pictures from that trip pretty soon. THANK YOU DON!!!
We then went up to St. Augustine and spent a few days with Anne's Aunt Claudia and enjoyed some of the "Old City". Jon Jon and I went to see The World Golf Hall of Fame and got some cool pics there too! We then took a quick 20 minute ride and went up to see the TPC at Sawgrass with it's "world famous" 17th hole with the island green. Jon was bored stiff, but he tolerated my enthusiasm and nerdiness and checked it all out with me. I unfortunately didn't have the 4 hours or the 400 dollars it costs to play the TPC course. I'll wait until Jon Jon gets a bit older and has a better golf game, then he and I can go play there. One day Jon Jon and the girls went to The Alligator Farm while I went golfing. They had a great time there. Anne and Claire got a nice picture with an Albino Alligator in their lap and a big snake around Anne's neck. Jon Jon and Aunt Claudia chickened out and wouldn't get near the snake or gator even though the gators mouth was taped closed. I will put those pics up soon as well. The trip was a much needed vacation after everything we have all been through the previous few months. Thank you Aunt Claudia for bringing us down and having us stay with you!!
Finally, Our entire family would like to thank everyone that arranged and attended and the players that played in the Hockey game against the Buffalo Sabres Alumni last Sunday. We had a total blast and we will never forget the memories that were created that day!! We saw so many people there, that it was very overwhelming for all of us, especially Jon Jon!! We would very much like to thank all of the volunteers that sold tickets, t-shirts, wrist bands and 50/50 tickets for the fundraising effort also!! And last, but not least, Thank you to the Town staff that worked at Lincoln Arena that night, you folks did a fantastic job keeping things organized with such a large crowd of people and the ice was in great shape for the skate!!
As for the game itself, The Sabres players were so kind to Jon Jon, especially Ric Seiling, Grant Ledyard and of all people Rob Ray, who was able to coax Jon Jon out on to the ice to do the ceremonial face off with an awesome original Sabres jersey!! It had "CINELLI" on the back and his favorite player Ryan Miller's "30" on it. I'm afraid to see what Rob would've done to him had the jersey not worked. Unfortunately the Sabres Alum weren't as kind to our hockey team. I'd call it a good old shellacking, but everyone had a blast out there.
Actually, once Jon Jon got out there and did the face off he relaxed and had a wonderful time on the bench with his cousin, Connor. The two of them had a great time harrassing our Police Team and reminding us how terrible we were. At one point our team had finally scored a goal and Jon Jon stated that the score board operator must've messed up because there is a "1" on the scoreboard for us. Oh Yeah, he was really funny...well, not really.
We just really appreciate everyone that came out to support us. It was also very nice to see 2 of our new friends we made at Roswell last month, Dr. Killian Salerno and one of our radiation therapists Patty and her son who I understand is a pretty good hockey player in his own right. He has offered to take Jon Jon out on the ice to teach him how to play hockey on a few occasions. Hopefully we'll get to take him up on it before golf season begins!
That's about all the update on Jon Jon's condition that I have! We will keep all of you informed on the results of his MRI's, as well as his progress. In the mean time keep your good thoughts and prayers coming for him!! Thank you!!!
Jon, Anne, Jon Jon, and Claire-bear
Tuesday, January 29, 2008
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