A fundraiser for little Deacon.

Jones Family Fundraiser

I know we see many of these fund raising websites on a regular basis and I know that Brianna and Travis will be embarrassed by this, but... I want to help! This is the best way I know to do that. We know firsthand what they will be facing. Those expenses add up fast. Deacon has been diagnosed with a Chiari Malformation as well as some boney anomalies including a broken vertebra. He is going in for surgery on the 16th of April where they will drill 2 holes into his skull and break away a portion of his skull to create more room for his brain. They will also remove his top vertebra and will be fusing his spine together with pins, screws, and portions of his own ribs. They expect to have him stay in the hospital for 4 to 5 days after the surgery. Brianna, Travis, and Deacon will then stay in a hotel for another week after his surgery so they can be close to the hospital in Salt Lake in case anything happens. This will be an expensive surgery. The expense that comes from being away from home, will be more than their little family can handle. They will have traveling expenses, medical equipment expenses, physical therapy expenses, and so much more. Travis will not be paid for the time he will be away from work. Brianna babysits full time, sells makeup, coaches tennis for the highschool, rebuilds old furniture to sell, and fills in at Chadwick Sports Grille as needed. She will also not be able to work during this time, as well as the 12 weeks to follow while Deacon is recovering. Please donate anything you can. The smallest amount will help. If you cannot make a donation, please share this page. We are so grateful for the love and support they have received along with all of the thoughts and prayers.

If you would like to donate, please go to this link to help them.
Jones Family Fundraiser

  

Slight setback, Cycle 35 gets cancelled.

MONDAY

Slight setback today regarding Dick's chemotherapy.

During the last cycle he developed some pretty severe blisters on his feet. Mainly between his toes. It's been crazy these past 3 weeks. I've never seen anything like it. It was scary because he heals very slowly due to his diabetes.

We left bright and early this morning thinking he would begin a new cycle. After lab, CT Scan, and the Oncology visit, they would not allow him to continue today. The oncologist wants him to let his feet heal a little more incase he gets another reaction. She said that if it is the chemo that caused the blisters, the second reaction is 10 times more severe and it would be too risky with his diabetes.

So we're on our way back to Idaho now. His next cycle will be the week that little Deacon has his surgery. If Dick reacts again, they will not let him continue on this clinical trial. The oncologist also thinks that his body needs a rest from the poison.

Naturally my sweet husband is coming home disappointed to say the least. He wants to continue until they tell him the 25 tumors are ALL gone. He's worried that a break from the chemo this long might mess things up. Today has been a VERY long day and it will be nice to get home. 

Here's to hoping and praying those stubborn tumors behave until he gets back.

My sweet girls and Deacon of course!

The girls and I had a fun day in Twin Falls.

 ...so did Deacon!

Sunday pictures...

Thanks for your visit sweet girl.

We've been going on little vacation during Spring break every year but this year we didn't do anything. It seems like Dad and I go on vacation every 2 weeks and live out of a suit case when we go to SLC for his chemo. It was nice just to stay home, sleep in every day, and be lazy. I think it's what Aubrey wanted more than anything as tired as she's been. She slept in everyday and also had tennis practice everyday. 

Every moment... thank God.

This is a CRAZY world!

We went to see Cinderella. This is when the father of the prince is dying.

Deacon: "What!!! First Cinderella! Now this!?! This is a CRAZY world!"

Spring Break for Aubrey!

SPRING BREAK FOR AUBREY! 

NO SCHOOL!

...and then it's spring! My favorite weather is bird chirping weather! 

Happy Spring!

Baking with Deacon

Brianna and Travis brought Deacon over after church today. They had a meeting with the bishop and asked if we could watch him for a bit.

I was baking banana bread so he helped me.

He said, "I think we need to add pecans and coconut."

 Luckily we didn't have any coconut.

Tennis 2015

SATURDAY
Aubrey had a tennis match on Tuesday, Thursday, and Saturday this week.

On Saturday Deacon and I watched Aubrey's tennis
 match from the car. It was really windy. 

Deacon watching Anson's tennis match 4 years ago.

Our beautiful family 4 years ago.

************************

I received this text on my phone from someone in California. (Anson's mission)

Thanks for lending us your son! He's helping us move into our first home! The Kings.

They also sent this picture.

Deacon's consult with neurosurgeon

Deacon had his first consult with Dr. Bollo at Primary Children's Hospital. Giselle met us in Brigham and we all drove to SLC. She was heaven sent. After the doctor saw Deacon and in between the CT scan and X-rays, she totally entertained him. Deacon loves her so much. 

Such a big boy!

 He left with a neck brace.

They said he could only take it off during sleep, eating, or when he's having quiet time.

Deacon wanted to go to his favorite place for dinner. He wouldn't have it any other way, even if it meant driving way out of our way. A little bit before we got there, he fell asleep. We tried to wake him up but he would just go right back to sleep.

We met up with my dear friend, Leanna Parks.

 Bree is the best at catching the flying shrimp!

Deacon's visit to Primary Hospital and an update from Brianna

Even before Deacon was born, he was attending football games and cheering for Anson and the BHS football team.

 When he was a newborn and it was too cold, he'd sit up in the room with grandpa where grandpa announced the games.

 When they were away games, he'd walk the side lines with grandpa.

 He's always been their #1 fan.

 As he got a little older, we noticed that he wasn't only their #1 fan.

 He actually really cared about the game.

Deacon has always loved football. The first thing he started doing as soon as he could handle a ball, was throw it pretty far for a little guy. He's always tackled other children. Not to be a bully but because he thought he was playing football 24/7. He knows the names of all of the NFL teams. He is pretty amazing! We always thought that it was such a coincidence that his name is Deacon Jones, like the fearless Deacon Jones best known for leading the LA Ram's "Fearsome Foursome" defensive line. He's fearless and has a passion for football like we've never seen. In his 5 short little years, he has really lived up to his name. Deacon also owns every little wrestling action figure you can imagine. He knows all of their individual names and random facts about each one. He loves wrestling! He is constantly wrestling with his father and grandfather.

Well lately we've been pretty careful about Deacon's activities. After his MRI, the doctor was sure he had Arnold Chiari Malformation so they sent him to Primary Children's Hospital for a surgery consultation. At his appointment, they made another discovery.

Here is an update from Brianna.

UPDATE ON DEACON:

Yesterday we took Deacon to see a specialist at Primary Children's Hospital in SLC, UT. The neurosurgeon confirmed that he does have a very severe case of Chiari. After a CT Scan and a few mobile X-rays, they found that there is A LOT more going on with our little man than we initially realized.

Deacon has several bony anomalies in his upper spine. The first, and most concerning, is that his C1 vertebra is fused to his skull. His C2 and C3 are fused together. Because of the stress of those 2 fusions, his C1 has broken in half. The top of his C1 is attached to a ligament, but the bottom is not attached to anything. So, this puts him at a very high risk for a spinal cord injury. If his head cranes forward or snaps abruptly, this loose fragment can pinch or cut his spinal cord.

There are some other things going on, including the fact that a portion of his C2 vertebra never fully developed, so there is a 5mm gap where his spinal cord is exposed.

Just as a recap... Chiari Malformation is when the brain stem is herniated down past the base of the skull. His brain stem is protruding down into the space where the spinal cord usually is. So, every time his body tenses up (coughing, laughing, crying, pushing of any kind) or when he strains for any reason his brain stem is getting pinched. That is what is causing his neck pain and headaches. The brain stem is also acting as a cork. So there is not enough cerebral spinal fluid flowing down into his spinal column. Dr. Bollo thought that the reason he stutters sometimes is that he is experiencing pain and can't focus enough to get the words out.

Now... The surgery is scheduled for April 16th. I am glad it is sooner than later. I sincerely believe that Heavenly Father has been guiding and protecting Deacon. If you've ever seen him play, you know he's not a cautious kid. Every second of the day he is either flipping, tackling, wrestling, or jumping off something. The only time he's calm is when he's sleeping. And he doesn't even hold still then. We are extremely blessed that he has not had a serious injury.

When they do the surgery, they will address the Chiari first. Drilling 2 holes into his skull and breaking off a section as well as removing the top vertebra to create more room for his brain. Then they will remove any more broken fragments from his vertebrae and fuse his spine together using pins, screws, and portions of his own ribs. Dr. Bollo is pretty confident that this is the last surgery he will need. He said it is possible, but highly unlikely that he will need to address this again in the future.

For now they want him in a collar/brace, especially when driving and doing anything physical. We realize that we are so blessed. There are so many worse things we could be dealing with. While there is not currently a cure for Chiari Malformation, it is definitely treatable. That does not change the fact that this is our baby we're talking about. He is our whole world! As any parent would, we would take this upon ourselves if we could, but we can't. We ask for prayers and loving thoughts. We are praying for comfort and patience. We'll keep you all posted from here.

I know without a shadow of a doubt, that he, like the famous Deacon Jones, would have also become a legend in football because of the passion he has for football and because he's fearless.

 I also know that football and wrestling is a love that Travis has and because of this,

 they have developed a special bond.

The love that Deacon has developed for these two things have a lot to do with the love that his father has for them. He loves the bond between him and his father. Travis will be the one who will have to make the biggest changes now. He'll have to encourage other sports now. I don't have any memories before I was 8 so I know that Deacon will forget the love affair he has for these two things. I hope he develops a love for baseball, piano, track, and other things.

 Giselle told me something the other day.

 "Mom, I've never seen a boy with so much passion for football and wrestling. He's fearless! Maybe Heavenly Father is just preventing a tragedy from happening in the future.

 We can't see the big picture. He's watching out for Deacon now."

I like that perspective.