Friday, March 13, 2009

March Update

Happy Friday 13th to all of you superstitious ones!

Sorry for the long delay in any type of updates. As many of you may have noticed the Jon Jon's Journey website had some technical issues(I didn't pay the bill) and was down. I'm happy to say that the situation was resolved (I found out about the bill and paid it) and it will be back up and running soon. With the help of our friend, and websire guru, Bill Fleming it will be bigger and better than before, if that's possible. We plan on having it as a tribute site for our little guy and also as a fundraising/research update site as well.

Since Jon Jon passed away we have been slowly getting back to life. I think everyone realizes how difficult it is for us but, we manage to perservere through our grief and continue on. Claire is doing wonderfully in school and is really coming out of her shell and developing into a magnificent little girl. We think being in Jon Jon's shadow through all of this kept her from displaying what a funny little sweetheart she truly is. We knew it was in there and it's nice to see her break out of her shell.

Anne has been going back to work at the farm more frequently and getting back into the saddle, literally! I think it's therapeutic for her to be back out there amongst her equine freinds. I'm sure it's difficult as well, because Jon Jon was always out there running around with her and Grandma and keeping them company. I'm sure she catches herself looking around for him for a brief second every once in awhile before the pain hits and she remembers that he is gone. We still do the same at home on occasion and those incidents are becoming less frequent but, I'm sure it'll continue for a long long time.

As for me, I went back to work the second weekend in January. It was difficult to come back but, I felt it a better alternative to sitting in the house all day and immersing myself in grief. Unfortunately the weather limits activities I find therapeutic (golf, biking, etc.) and I needed to get out of the house. So coming back and taking care of the sick and injured is now my therapy. I know I'm sounding a bit sarcastic and I am a little but, after spending more that half of my life doing this I missed it a some while I was away from it. However, I was very grateful that we could both be home with Jon Jon during a vast majority of his battle and especially for his final few months. We are so thankful for Anne's friends that held down the fort at the farm and for my co-workers that switched their schedules around so that we were able to be there.

Since Jon Jon died we have been trying to keep up on what has been going on in the DIPG community. More so Anne than I. She finds it therapeutic to keep up on children that are currently battling the disease and those who have lost their battle. I can't even look at the sites. I begin to cry at the picture of those beautiful little kids all swollen up from the steroids like Jon Jon was. Maybe someday I'll be able to but, not yet.

Last weekend Anne and I went down to Cincinatti for a big Gala for The Cure Starts Now Foundation. The foundation was started by a family who lost a daughter to DIPG last year. The foundation funds research and treatment trials for DIPG strictly. The new theory is that DIPG is the "big bully" of brain tumors and if we can defeat this one, then we can beat all of them. Obviously, the cure is a long way off and needs a lot more funding. If you get a chance, jump on their website and take a browse at .

The Gala was very nice and we had a wonderful time albeit, emotional. Anne had her picture taken with funk icon Bootsy Collins who made a guest appearance. I'll post the pic at some point. The next morning we went to the hosts house for a nice breakfast with other parents that lost a child to DIPG. It was very therapeutic for us to be with them and share our stories about our kids and their journeys. It was also nice to know that many of the things that we have been thinking and feeling in our grief are shared and completely normal for our loss. Most importantly, we met parents that lost their children a year or two before Jon Jon died and we found that their grief has eased a bit and day to day living becomes easier. We see that others have experienced this terrible loss and have continued to perservere.

Well, I have been typing this update in between calls at work and it's now time to go home so I had better finish my paperwork so I can leave. Our entire family would like to thank everyone for their continued prayers and support. It is helping us to continue on and we truly appreciate every bit of it. We will update as we can.

God Bless and much love,
Jon, Anne, Claire and our Jon Jon up in heaven

Thursday, December 4, 2008

Life Goes On

Hi All,

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. 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

Our Angel

Hi All,

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.

With love,


Wednesday, November 5, 2008

Halloween Pics

Hi Again Everyone,

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 at the Reimers' house debuting his
Thomas Costume.

Jon Jon with his Kindergarten teachers from
last year, Mrs. Kulikowski and Miss Marcia.

Jon Jon and his cousin Connor playing.

Jon Jon sitting at his train table and a very
small portion of his wooden Thomas the Trains
and buildings.

Daddy, Claire and Jon Jon marching in the school
Halloween Parade.

Jon Jon in his Thomas Costume.

Jamie(hidden), John, and Jake playing before
we went out tricks or treating.

Claire with Jessica, John and Emma Botham.

Our Halloween Decorations.

Monday, November 3, 2008


Hi All,

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

Long Overdue Update

Hello Everybody,

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

Chemo Update

8-14-2008 Jon Jon and Daddy at Brighton

Hi All,

Well it's Tuesday night and Jon is asleep in bed. We finally got to give him his chemotherapy treatment. We had talked to Dr. G at Duke and he agreed that we should go ahead and give Jon Jon the Avastin treatment. We had to wait until the last minute yesterday to find out if we were going to go to Children's and get it. Last Thursady he was supposed to start the chemo, but on Thursday his Doctor called us and said his blood culture came back "positive" for some type of infection so we had to make a trip down to Children's for Vancomycin IV. We were there from about 6 p.m. until about midnight. As with anyone that goes through an illness like this, we are becoming very familiar with that place. Anyway, we are now giving Jon Jon the antibiotic IV every 8 hrs until this coming Saturday. It wasn't too tough for me to figure out the pump and Anne has also become very proficient at taking care of his med-port and operating the IV pump. We figure she was a nurse in one of her past lives.

Monday morning came and they gave us the green light for the Avastin treatment. We arrived there around noon and got settled in on thhe 8th floor and the doctors came in to evaluate him for his treatment. As luck would have it, he had a "little crackle" in his upper right lung and they were concerned he may have been starting a pneumonia. We've been very worried about that happening because he has such difficulty swallowing somethings. They did a chest x-ray(2 more hours of waiting) and it was clear so they said go aherad with the treatment.

His first treatment was a 50 ml bag over 90 mins and then they would watch him for an hour for any reaction and send him home. The first treatment is supposed to go in slowly so if he does start to have any reaction they can shut it down and deal with it. So the nurse hooked him up and it began running in. About a 30 mins later the pump started beeping and the bag was empty. The nurse mis-programmed the chemo and it went in 1/3 of the time it was supposed to. She knew it was a 90 minute dose, but she put in the settings backwards. Thank God he didn't have any adverse reaction and he still has not as of this point. Today he was a little punky and more tired than usual. He couldn't even stand or walk on his own and he goes about 80 lbs. so he is a handful to maneuver aroung. Thank God for my employer and co-workers covering my shifts, and Anne running her own business, we are able to be here 24/7 with him to do whatever he needs.

Claire has been a very patient angel too. Dave and Jane across the street have 3 boys, 2 of them Anne has mentioned, Jamie and Jake. They are Claire's pals and she plays with all of the time. They have been wonderful in taking Claire over to their house to play and be entertained so we can focus on doing things for Jon that we need to do. It also gives us a minute to sit and relax when we can.

That is about all for now. We'll try to keep everyone updated as to Jon's progress on this new treatment regmien as much as we can. Please keep the positive thoughts and prayers coming for him. We need them now more than ever! Thank You!


Jon, Anne, Jon Jon and Claire