05-24-2008
Jackie was well enough to attend his first dance recital! He did so great! Stacy, Jack and Robynn's dance teacher and the owner of Spotlight Studio, dedicated the night to Jack. It was so very touching to our family to find that out and that Jack has inspired her along with so many people. Here are some pics from the night. The fourth thumbnail will lead you to a video of Jack and Robynn's dance routine (please read below about the notes on the video). Notes of the Video: The first 16 seconds of the video are black until the song starts. Also, the was a "no film" policy, but I filmed anyways as it was Jack's first and most likely last dance recital. Because of that there are heads in the way. You can see Jackie in his stroller, and Robynn is the second girl from the left. The video is 3 MBs and may take a bit to download on slower connections.
05-23-2008
From Aunt Mariah:
Megan called, and told me that after giving Jack some regular, over-the-counter medications (Ibuprofin, I believe), last night & today, Jack is happy, bubbly, smiling, and laughing today. Megan & Craig are taking the kids to the zoo this afternoon, and are excited to see Jack's energy today, as his first dance recital is tonight! Anyone interested and able to come see Jack and Robynn dance, the recital will be at the Warner Theater tonight, 7pm (doors open at 6), and tickets can be purchased at the door for $8.75/each. Jack and Robynn are on first, so don't be late- the number is only about 2-3 minutes long. They are located at Stage Left, if you would like to plan your picture taking. I hope to see as many of you who can attend tonight as possible. For anyone who can't make it, we'll OF COURSE post pictures & videos. I took some (not so high quality) pictures last night, and tonight I will get video and more pictures (with a new camera- woo!), so we'll have some good stuff for you by tomorrow morning. Keep up the good thoughts & prayers!
05-22-2008
Jack was able to attend his dance rehearsal. Tomorrow is his recital. Please keep Jackie in your thoughts and prayers. He needs them now absolutely the most.
05-19-2008
From Jack's Mom:
After staying a night at Hamot last week for a lung infection, Jack has been receiving breathing treatments and oxygen at home. He is getting over the cold but he is now showing signs of significant brain stem pressure. Jack received one of his infusion drugs in Pittsburgh today but it is unlikely we will be back at Children's again. He is close to slipping into a coma. We are hoping that the drugs will get him through this week so that he can go to his last preschool classes and dance (from his chair onstage) in his first and only recital.
05-08-2008
I was over at Jackie's house a few days ago. He was having one of his "good" days and was able to get outside and swing on the swing! He had so much fun. His friends Jaxon, Jet, and Jonivan were over too! He had such a good time. So good of a time that he almost fell asleep in the swing! Here is a picture and a video from that day. Afterwards, we went inside and sang happy birthday to Mike. Jackie helped blow out the candles. Everyone enjoyed some cake together. Jackie was so cute!
04-27-2008
From Jack's Dad:
Jack is currently on DCA (dichloroacetate sodium). This is in addition to Avastin + CPT 11 - his most recent treatment. This drug described in a common language - operates on all cells in his body (including the cancer cells) and causes them to act more like normal cells. Since the normal cells are normal they are rather unaffected and unchanged. Cancer VS. normal cells don't use the same energy / metabolic pathway. Normal cells have a life span and cancer does not. DCA forces cancer to either convert to normal or die. IF they convert they then have the normal life span of a cell in that case. There's not a lot of down side to this drug especially because he's so young. Kids tolerate this very well - adults have some side effects which limits the amount and dose they can tolerate. We did not willy nilly start this. We traveled to Toronto Ontario and spoke with Dr Khan of the Medicore Cancer Center in Canada. It was only then that Megan and I were both convinced that this was a potentially good thing for Jack. Keep your fingers crossed - we are hoping that because this combination of DCA and Avastin + CPT 11 we have something significant. To our knowledge it has not been tried.
Meanwhile - Jack has lost the use of his left arm and can only walk with assistance and his speech is labored. He's just a smart as he ever was - he just has trouble expressing himself at this point. We are told by Dr Khan that the DCA will not have an effect for about 3 weeks or more. As of this Monday - two week to go to see. If his losses slow or stop this is a good thing. Best possible case he regains some of what he has lost. By the way - he lost all this way back in November. He and we are going thru this all over again except this time it's in slow motion.
The pictures are of us in Niagara falls photos that we took on the way back from Medicore Cancer Center in Toronto. The video is of Jack (and Robynn) at a recent dance class.
04-14-2008
I was lucky enough to enjoy a walk today with Jack, Robynn, Craig and Megan. It was such a gorgeous day today so we walked around the whole block. Jack rode in the wagon since he doesn't walk much anymore. He was really excited to see the moon. He actually was the one who pointed it out to us! I even took a video of him looking at the moon and Craig, Jack's dad, singing a song to Jackie. He's such a cute little guy and a strong fighter. He is still declining, but fighting it every minute and with every ounce of strength.
04-09-2008
From Jack's Mom:
Last night, the staff at Wegmans (and WKids in particular) staged a wonderful evening for our entire family. Jack has been going to WKids since the day he turned 3 and the girls there wanted to do something special for all of us. So last night the four of us arrived at Wegmans to a crowd of employees blowing bubbles for the kids as we entered the building. Inside WKids, we found they had closed the facility to everyone except for us for the rest of the evening. They had decorated it with a Nemo theme complete with huge Nemo wall hangings the art department had made up that day. Jack and Robynn had their own little party table set up for them (in a Nemo theme of course), and found they had gift bags full of presents and a new Nemo blanket one of the employees had made for them to take home.
While the kids got to play with the girls at WKids, enjoying pizza and watching Nemo, Craig and I were whisked away to a cordoned off area of the Market Cafe where we found a table set just for us, tablecloth and flowers and everything. Two of the chefs at Wegmans then brought us out an incredible four course meal that they had prepared especially for us. Anything we wanted or needed was brought to the table including an in-house phone to call over to the kids if we wanted. It was unbelievable.
We returned back to WKids after the meal where employees brought a beautiful Nemo shaped and decorated cake, Nemo cookies, and a huge tray of donuts. The kids were just in heaven. It was an amazing night I don't think we will ever forget. We have always sung Wegmans praises but this surprise was just more than anyone could ever dream of receiving from their grocery store employees.
So here's a big thanks to everyone that made last night possible. It was incredible, truly incredible. To know that Jack is so loved by so many people, and that that love inspired them to put this together is amazing.
03-25-2008
From Jack's Mom: Evening everyone. For the past week or so Jack's function has been going down, something we attributed to radiation swelling. He has been throwing up, weak on his left side, lethargic, basically all the symptoms we saw before radiation began. Because he had been throwing up so much our oncologist had us come down for an MRI today and what we found was extremely bad.
Jack's cancer has metastasized. It is all through his brain, in his cerebral spinal fluid, coating his spinal cord, and because he is shunted, almost certainly in his abdomen as well. We have hit a point of no return so to speak. I asked if he would now be eligible for any clinical trials and she said no, unfortunately, for two reasons. First, Jack had just recently been on chemo and the patient must be at least three weeks off before enrolling in a trial. But secondly, anyone eligible for a clinical trial must have an eight week life expectancy which Jack does not have. Even worse, we just learned that the little girl we went through radiation with just died last week. Her end story started out similar to ours and she was gone in about three weeks so I'm not anticipating having any more time than that.
The fact that Jack's MRI, 6 weeks ago, was so encouraging only underlies what an incredibly aggressive cancer he has. The radiation and chemo last November and December did a fantastic job at killing about half of the original tumor. What was left grew back so ferociously there was no stopping it. We tried everything we could in the time that we had. It wasn't enough. I don't believe now that anything would have been. So for the next few weeks we will have Jack at home with us where we will try to make him as happy and comfortable as possible. This is something we've been preparing for, in a way, since last November.
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