Save Jace

“At times we cannot see improvements looking into the situation, but if we look back we can see the progress.”

A lot has happened since our last update in May. I know if I would update more often, I wouldn’t have to write an entire book for you all to read and I apologize for this and can only promise to try and write more often.

On May 20th Jace participated in the Pilot for a day program. I borrowed this from Driscoll Children’s Website to give you an overview:

Pilot For A Day focuses on children that have been stricken with illnesses that have taken over their lives. These children usually end up spending more time in the hospital than they do with their family and friends. Trying to ease the pain of losing a childhood, due to what many would say is an unfair deal in the game of life, is the purpose of the program.

The “typical” day begins with the child traveling to NAS Corpus Christi and meeting with their host pilot, who then outfits the child with a flight suit. Afterwards, the child receives a tour of the squadron, where the young “pilots” are given their wings.
Squadron patches, a flight cap and a scarf are the next items to adorn the uniform, which always seem to add another smile to the lives of these children. The “pilot” then is taken through many static displays of aircraft, where they are shown around and allowed to sit in the cockpit. Additionally the child is given a ride in the flight simulator, has the opportunity to visit the Crash Crew, the Air Traffic Control Tower, and talk on the radio with pilots in the air.

The goal of this program is really just for the child to have a wonderful day, and take his or her mind off of the illness. The staff at Driscoll Children’s Hospital try their best to make this a day that will not only make the children feel very special on that day, but make them feel special and happy for a long time!

Jace had a blast!! He got to sit in all the different planes of the Navy, The border Control Jet, Helicopters of the Coast Guard and even a BlackHawk. Each time we went on a different plane, the pilot would take Jace up into the cockpit and allow him to play with the controls and steering wheels. Every one of them spent a good 10-15 minutes just talking and telling Jace about what they do and how things work. Each squadron he met with gave him a squadron patch. Some even gave him their official pilot’s coin. We ate lunch with the Commander on base. He got to end his day at the fire station where of course they let him ride in the fire engine and took us out to a field where he got to blast the water from the front of the engine.

On June 19th we had our annual Relay for life, which of course we participated in. Jace always has a BLAST running around the field first and then making us run again since everyone is “still going.” This year I got to participate in that run since I wasn’t carrying Jarron in my tummy. I told Josh we were going to have to start training for that little run-a-thon Jace has there. But once again we had a blast for a good cause. Josh’s brother had a student at Calallen High School, Shelby, who created a luminaria in honor of Jace and that is the picture of Jace and the girl sitting next to each other.

Jace continues to see Dr Alter every month to access his meta-port. We have talked to the Dr lightly about plans of removing the meta-port and the Ommaya Reservoir in his head. They have talked about removing the meta-port a year after radiation, which is approaching us more rapidly than we could ever imagine. Can you believe it is already going to be in August – September…a year. But the Dr is hesitant about removing the Ommaya as it will be another major brain surgery to do. I’m not sure if that means they will leave it in forever, or just for now.

He continues on with the maintenance chemo. As usual, he handles it very well. Once, he got sick in the middle of the night, but we think it was my fault as I neglected to give him his zofran beforehand…that is the nausea medicine he takes. I wanted to try his treatment without zofran seeing as he hadn’t been sick on it since we started in November and I thought any less meds we have to give him would be better, but that didn’t work. Obviously it is a necessity and started up again the very next night. Last week he finished a round of chemo and we had some mild nausea in the morning, I think it was a result of morning hunger…but who am I to judge how he really feels??

On June 27th, Jace and his cousin Jonah participated in a golf tournament at the Gabe Lozano golf course. Josh took him to the three clinics every Saturday up to the big tournament on the fourth Saturday. He practiced putting, chipping and driving the ball. On tournament day he competed with fourteen 4 and 5 year olds and ended up placing 4th. They gave him a medal that he hangs in his room with pride.

Right now Jace is BIG into CC Speedway. This is the racecar track that we attend almost every Saturday night. He loves to watch the races and he even has his favorite cars. He screams out at the beginning of the night, “Gentlemen start your engines.” And he hoots and hollers for his favorite cars throughout the races. It’s just a blast to watch him, and I even get into it sometimes too…Josh does the commercials for CC Speedway on 97.5 KFTX and he has included Jace in some of the commercials.

We see Dr Alter again next Friday so this week coming up we will be doing blood work and getting ready for that apt. Over all, everything has been going really well. We continue to be humbled by the prayers and support of everyone and cannot thank you enough for the kind words you send. Every now and then we will get a letter or an email just reminding us that we are not alone and everyone out there is still thinking about Jace.

God Bless
Joshua, Jamie, Jace and Jarron

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