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The content from 2003 to 2010 has been transferred over from our previous web host. So, on occasion, reference will be made to menus and such that no longer exist. The journal entries were priority and the rest wasn't able to be moved. So, enjoy our story. God is still moving and working in our lives.

"New Brain"

Les woke up last Thursday (1/15) with a "new brain".  He recognizes that something is different. It seems his thoughts are bouncing around in the new space left from the removal of the cavernoma.

He's got so many more ideas of things he wants to do. Teen pop star, lego designer, sound engineer/radio producer, go on cruises, etc.

None of his ideas correspond to accomplishing school work though.  So, the homeschool schedule is hard to maintain because he is more easily distracted; so much so that the meds that help him focus and concentrate don't seem to work anymore.  Needless to say, I'm having to constantly adjust my parenting techniques and he's keeping me on my toes trying to guide this "new brain". 

The upside of all this is that he is extremely upbeat, positive, and confident. Maybe watching The LEGO Movie and playing the LEGO Movie video game over and over again before and after surgery influenced this.  Because you know, "Everything is AWESOME!"

Post-Op

We went to Les's post-op appointment today and everything is progressing well. He can't do PE type activities for a month, which doesn't dissapoint him at all!

School starts back tomorrow, so we will see how his brain works.

Thanks again for the prayers.  We still need them during this recovery/transition back to school process.

The Game is Here

Two day update:

Friday was movie watching day with a nap thrown in for good measure.  Our friends brought dinner and then we played some non-video games.

Today (Sat) Les received his long awaited video game- the LEGO Movie game. Mom and Les played all morning, then a break for lunch, and then friends came over and the kids played some more.

Please continue praying for complete recovery.  His body continues to show improvement each day.

"I'm Good"

Another quiet night last night with Cillia being Les' slumber buddy in our family room. Les and Jason spent the day together playing video games, watching a movie, talking, texting, walking 10 laps around the front yard, and receiving a surprise lunch and dessert for Les from a good friend.  Les' cousins Jazzy and Wiley stopped by for a visit this morning.  Cillia spent the day working and taking care of her family.

We are continually amazed by Les' attitude during recovery.  When asked how he is doing, Les answers, "I'm good!"  I (Jason) am reminded of the Pepsi Max commercial where the different scenarios show guys getting thrashed and jumping up and saying "I'm good." 

https://www.youtube.com/watch?v=GkgZFI4ZT0I

Thank you for your continued prayers for a full recovery.

First Day Home

We had a very uneventful night last night.  Les slept in the recliner, dad was on the floor, and mom was luxuriously lounging in her bed.  Mom's turn to sleep on the floor tonight.

It was soooo nice to be home today.  After breakfast, Les dove into the video game land.  He did that for awhile and then put himself down for a nap.  He had lunch after the nap and then Gammie came to visit for awhile.  After Gammie left, Les took a shower!

Les is on some steroids for a couple weeks and they suppress his immunity.  So, we are limiting visitors to the healthy ones only.  Please call us if you want to visit.

Thanks again for your prayers.  Recovery is progressing, but he's not fully back to 100% yet.

Going Home!

Les says,  "I only have one problem. I don't know which was my favorite nurse."  This comment came out of the blue while driving home.  His nurses were Rose, Sherayah, Tara, Kelsie, Danielle, and Sarah.

So, with the checklist complete, we are now heading home. Les wrapped up his requirements by noon, but we knew if we proceeded with discharge "right away", we would be in the middle of the evening commute.  So, we requested a delay in discharge till after the evening commute lightened up.  We left the hospital at 7:30pm.

Les says, "The side of my head does not feel good."  But he's still eager to get home to that video game. That video game turned out to be just the right motivation for him.

Besides taking a short nap this afternoon, Les has talked non-stop today.  We figure he is making up for lost time since he slept all day yesterday.

Les saw Sarah, a nurse that he met at Camp Mak-A-Dream/Teen Heads Up Conference in Montana. She works at Rady Children's and was available to escort Les to the car.

I'll update again tomorrow...

Arrrrrgg - just got home and the video game was waiting for him, but they sent it for the wrong console! We have XBox One and they sent PS4. So we are going to contact them and say we either need them to send the correct video game, or the correct console to play the game they sent - oh and next day delivery! HaHa

Checklist

As you can see by the picture, Les has some work to do. When he's finished with his checklist, he can go home. Maybe even today! He's motivated because he's expecting an Amazon delivery of his new video game.

Les will be receiving visitors at home - when we get there.

In the process of writing this post, he completed his breakfast and farted! The nurse was here when he farted and was able to verify the achievement ;)

He's Back

We got Les back in the hospital room a little after noon and he watched a movie, then took a long nap, then woke for a few minutes and took another long nap.  He is still sawing logs at 6pm. When we first put his glasses on him here in the room, he looked across the room at the whiteboard that the nurse uses for notes and treatment information and he said, "the date is wrong on the board." He was correct, the date said 1/4/14 where the correct date is 1/5/15. That said a lot for his memory, vision, state of mind, and communication skills.

We will keep you posted on his recovery process, but for now it all looks good according to the doctors.

"Everything went perfectly"

Dr. Levy said everything went perfectly. They were able to remove the cavernoma without any complications. It was located in the angular gyrus area of the brain. We will need to monitor his abilities in speech, calculations, and writing to see if they were affected. He is still in recovery and we haven't seen him yet.

Les went to surgery as scheduled

Prayer is powerful! Les was less apprehensive about the brain surgery than he gets when meeting new friends.  He was chatting away with the nurse and doctors when they rolled him away.

Les is in surgery right now. After we left him in the most capable hands (Gods), we started a load of laundry and had breakfast at the McDonald's here at the hospital. It is within pager distance of the operating room.

I'll post again when we know more.


Prep and Rest Day

Surgery is scheduled for 7:30am Monday 1/5/2015 and will last about 3 hours.  Dr. Michael Levy, M.D., Ph.D. and his team will be doing the operation.  He is highly skilled and we have full confidence the team can do this task.

It was a quiet night and morning as far as seizures go.  Plenty of beeps and clicks and movement to allow me (Cecillia) lots of opportunities to fall asleep again.  Some things never change at the hospital.

Other things change a lot.  Since we last needed to spend the night at Children's, they built a whole new fancy building.  The Hem/Onc unit takes up the whole 2nd floor.  We have been on the outpatient side of this floor, but this is the first time over on the inpatient side.  We have a private room with lots of bells and whistles.  Since it is a weekend, it is fairly quiet around the whole campus.

I mentioned the Ronald McDonald House.  It is incredible.  When they built the new building for the hospital, they also built a new parking structure which actually is built on the side of the slope across the street - so most of the structure goes down instead of up.  They decided to put the Ronald McDonald House on top of the parking structure - so from the street it looks like the second floor of the parking structure.  There are about 30 rooms for families to stay the night (all booked up with a waiting list right now), courtyards, exercise facilities, quiet nap rooms, computer room, play room for small children, etc, etc.  We are taking advantage of their laundry and shower facilities.  Most of these amenities are available for all the parents at the hospital - you just have to show your green hospital band.  This is all in addition to the free meals I mentioned in my last post.

11am - We just met with Dr. John Crawford, M.D., M.S., Les's neuro-oncologist.  He was able to show us the MRI images.  We could see the difference between the 2013 MRI and 2014 MRI.  I attached a photo.  Dr. Crawford was very confident that the surgery is pretty straight forward and the recovery should be quick (a few days at most?).  This was confirmed by another team member, Dr. Hong, from the neurosurgery team.

Today's job is to rest, eat and just hang out.  The flu restriction makes for a stinky visitation set-up.  Know that we would love to see all of you, but we just can't make it work very well.  Hopefully we will be home soon and can see you then.

Back to the hospital after 10 1/2 years

Here's the emails I sent to family and friends earlier today along with the latest update from the MRI. 

*****

Les had a minor seisure this morning and we took him to Inland Valley Medical Center in Wildomar.  They contacted Rady Children's Hospital-San Diego; coordinated with the doctors down there; did a CT scan; and now he is currently riding in an ambulance going to Rady's via medical transport (I'm riding with him).

His MRI in Dec. 2013 showed a small vascular cavernoma, and it was bigger in the newest scan from last Tues (12/30/14). They were going to recommend taking it out because it could cause seizures. Well, it looks like it will come out on Monday (probably).

Everybody is fine.  Les doesn't have any pain.  We are at peace.  It will be a new adventure.

Please pray for God's covering over us.

*****

We arrived at Rady's and Les had another seizure in the parking lot. His jaw moved up and down and then his face got all cramped up. It didn't last long. We made a pit stop at the ER to get some vitals and then up to our room.

We are now settled in.  Les is on the Hem/Onc floor, and they are under flu restriction. So, basically we can't have visitors in the room.  We can visit people out in the lobby.

*****

Les had a MRI this afternoon.  We spoke to Dr. Meltzer (his brain surgeon from 2003) about the results. It seems that the cavernoma has leaked and that is causing the seizures.  A cavernoma is basically an abnormal cluster of blood  vessels.  Dr. Levy (another brain surgeon who specializes in this type of case) is scheduled to remove it on Monday 1/5/15.

Les hadn't eaten all day because we weren't sure if he would have surgery today.  He was finally able to eat dinner, so now he's happy.

Ronald McDonald house across the street serves three hot meals a day to parents for free, so that is a blessing. It is all provided by volunteers, so thank you to anyone who has volunteered to do this. It is much appreciated.

Thank you for your prayers.  Even though our day wasn't what we planned, we have still been at peace.

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