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


linlou said...

Happy Belated Birthday to both of you! :)

JR said...

Dear Jon,Anne,JonJon,Claire,
My prayers are with you.
A Special belated
"HAPPY BIRTHDAY" to JonJon & Claire.
Your friend Frank E Browning Jr.

Anonymous said...

Dear Jon, Anne, Claire, and Jon Jon,
I have never met your family but, I have been reading your updates since i seen Jon Jon's story on the news. You are all in my prayers everynight. Happy Birthday to Jon Jon and Claire.

Chuck said...

Jon, Anne Jon Jon & Claire; You are all in our thoughts and prayers, what a strong family you have! Keep up the fight and keep the faith! Jon Jon's Journey is an inspiration to us all!
Chuck & Linda Berlinger

Rich said...

Happy Birthday!!!

Thanks for the update, I'm glad that Jon Jon is hanging in there. You are right, every day is a gift. I love the photos from the Bills game. I bet you all had a blast, especially Jon Jon. I love the smile on his face. Please know you all remain firmly in my thoughts and prayers. Praying that you all are comforted. If I can help in any way, please don't hesitate to ask.

God Bless.

Rich (Angel Matthew's Dad)

Medic604 said...

Dear Jon, Anne, JonJon and Claire,
Our prayers are with you. Your strength is an inspiration to all. Glad to see the treatments are helping you spend more and more precious days together. Our continued prayers are with you all. God bless you. I posted the picture at the Bills game in the office.

Dave, Oanh, Dave Jr., Nick, Alex, Zack and Noah Rice.

Holly Morrison said...

Hi JonJon and family,

Just wanted to say your friends in Chicago are still thinking of you and keeping you in our prayers. Happy belated birthdays to you and Claire. Bet you're having fun with your Dynavox. The school system here rented one for Katie to use. We programmed it to say, "Jack, you're a jerk!"

The Morrisons, Jack, Katie, Holly & Dave

Denise D said...

HAPPY BIRTHDAY Jon Jon & Claire,

All of you are in my prayers everyday. Please keep strong call if you need ANYTHING Bunkie!!!

Love you all,
Niecie, Tom & Tommie