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

Sunday, August 10, 2008

Anne's August Update

Hi All,

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