Monday 2-13-17

Jay passed away at 1:30 this afternoon. He passed away very quickly and was not in pain.  I'll share arrangements when I finalize them. 

Sunday 2-12-17

Jay has had no change in status. He is sleeping a lot and not as responsive as Thursday.  We continue to pray without ceasing. 

Friday 2-10-17

Jay is doing well, about the same as yesterday as far as progress. He had chemo this morning, physical therapy and a swallowing evaluation this afternoon. He has been asleep since 3pm and resting well. He didn't sleep well last night, just couldn't get comfortable. He also had some painful hiccups which kept him awake. We pray for continued stability and daily improvements.  The kiddos came for a visit this afternoon and we're playing hospital. Luke was going over "Ms. Wester's" chart and checking her "blood temperature".  Thank you all for the continued thoughts and prayers. 

Thursday 2-9-17

A great night and better day! Jay rested extremely well last night. He woke up with increased movement, trying to speak and being much more alert. The doctor said they will increase the iv fluids and give him chemo tomorrow.  It's a roller coaster and we are all hanging on for the ride. I know without a doubt that his progress is a Blessing and we owe it all to the good Lord and the power of prayers. 

Wednesday 2-8-17

Jay took a turn for the worse yesterday afternoon. He is no longer able respond. He is resting comfortably and is not in pain.  We ask for prayers of peace and comfort for him during this time. And pray for strength for our family. And I ask for especially strong prayers of understanding for our twins Luke and Audrey. 

Tuesday 2-7-17

Jay is doing noteably better today!!! Last night he was able to smile, wave and he started tracking people with his eyes.  Around 4 this morning when I was repositioning him in bed he rolled his hips to the side and moved his legs into a comfortable position.   By this morning he was able to respond to commands and shook hands with and said hello to his doctor. He also drank through a straw. Just a few minutes ago I asked him if he wanted to talk about our basement remodel (due to a flood) and he said, plain as day "Sure".  I am going to try to get him started on a  liquid diet to help as he recovers. He has not eaten since Thursday night. Before I could finish typing this update he asked for a Glucerna and said "I'm hungry" This is a rainbow that appeared just for a few minutes while he was being assessed this morning, I took it as a sign... the storm is over!! Praise God and all that He has done. 

Monday 2-6-17

Jay is showing a slight improvement. Still not able to talk or move his legs. But he is a little more alert than yesterday, which was his worst day. He is still not to where he was before the shunt. He is having to take a few steps back before he can move forward.   He is able to squeeze your hand when you ask him a question. He is resting and not indicating that he has a lot of pain. And when he is in pain he rubs the surgery site. So hopefully once that heals he will not have pain.  The neuro surgeon decided to reduce the restriction on his shunt, meaning they opened it up so the fluid can drain faster. We hope to see a more significant improvement within the next 24 hours. The doctors will reassess in the morning. Please pray for a miraculous 24 hours. I will let everyone know if there is a change. 

Sunday

Jay has not had much improvement from the procedure. He has been able to sleep peacefully with little pain. 

I wish there were more of an update but right now we are playing the waiting game.

I'll update if anything changes. As always thank you all for the thoughts and prayers. 

Rest comfortably

Jay did well with the procedure. He rested comfortably for a few hours after and is now having a CT as following up. He had a head ache which was easily managed. But not other pain. 

It will take a few days before we know if the shunt will help him.  He will have an MRI tomorrow to see if the swelling is going down. 

We continue to be thankful for the last 3 years and the time we have spent with our babies. We keep in mind that he could have easily lost his battle long ago. He is tough as nails, big as a bear, and will NEVER STOP FIGHTING! 

Thank you all for the thoughts, prayers, kind wishes, good energy, visits and on this particular day a big THANK YOU for wishing me a happy birthday. 

New Day...New Plan

Jays doctor has decided to have a shunt put in Jay head to drain the fluid into his abdomen. He hopes this will help clear up his speech and increase his ability to move. The procedure will be done this afternoon.

The down side is the risk for cancer cells to spread to the abdomen. The doctor has a plan for treatment if the cancer spreads from the shunt.

Jay slept great last night. His mind is still sharp he just can't talk. I pray the shunt will help him to be able to communicate better. 

Will update as we know more. 

Jay has been hospitalized

Jay has been declining each day this week. He fell again this morning, luckily just an abrasion on his hip. But because he is unable to walk or transfers himself from a seat to a chair he has been put in the hospital, for his safety and also to try to keep him comfortable. 

His ammonia levels are coming down, now at 80. His confusion is better. Unfortunately he is unable to  speak clearly or move very well. He did have chemo today, which will probably be his last treatment. There is swelling in his brain which is causing the issues. They have tried high dose steroids and also using a needle to pull the fluids from his brain. But things are still not improving. 

He will have another MRI this tonight to see if they can determine what is going on and if they can help him.

I'll try to update when we know more. Keep us in your prayers. 

one step forward... two steps back

Jay had a fall, around 1:30 this morning. 

He was getting weaker yesterday. And more confused with more slurred speech. He was unable to walk with his walker last night or move him self from the couch to his wheel chair. I put him to bed at 10:30. He tried to get up to go to the bathroom at 1:30 and fell. Since then he has declined pretty fast. He started throwing up around 6:45 this morning.  

He is at the cancer center getting an MRI of his head and spine. They are also checking his ammonia level. 

We pray for answers and peace and healing for Jay! 

update

Friday we received great news, The spinal fluid is showing no cancer cells. Jay will continue with his current treatment in hopes of keeping the spine clear.

Unfortunately he is having a hard time with high ammonia levels, partially due to previous procedures but mostly due to pain meds. His ammonia level was 120 Friday and 160 Monday. It causes him to be weak, sleepy, have slurred speech and confused. We've increased the meds which clearing the ammonia. It could take a while to get the level back to the normal range of 15-50.

I will try to update more often. Thank you everyone for the continued prayers. 

Hard at Work

Wester boys hard at work. 

Jay seems to be doing well today. 

staying strong

Jay is doing well.  His progress at this point is stable. He is able to use his walker full time around the house. His mental status is clear and he is helping me "over analyze" the upgrades to the house for handicap accessibility. 

His current chemo has been effective but a stronger chemo drug has been ordered and he will start on Thiotepa next week. It will be administered through the ommaya reservoir in his head. There seems to be minor side effects from the drug, fatigue that day and then back to normal the next day. 

Since the new diagnosis in November he has not had any of his normal chemo for the pancreatic cancer. As a result his tumor marker went up to 650. But since they started administering the brain tumor chemo through his head instead of as a spinal tap the tumor marker has gone down to 85. 

He is staying strong but he is tired. We are thankful for each day. 

For the patients and family members who are following the CA 19-9 trend, it is updated below. 

December 2013 CA 19-9 = 202,000+

January 2014 CA 19-9 =109,000

February 2014 CA 19-9 = 25,000

March 2014 CA 19-9 = 18,000

April 2014 CA 19-9 = 13,000

May 2014 CA 19-9= 5,500

June 2014 CA 19-9=1,964

August 2014 CA 19-9 = 481

September 2014 CA 19-9 = 211

October 2014 CA 19-9 = 111

November 2014 CA 19-9 = 57

December 2014 CA 19-9 = 40

January 2015 CA 19-9 = 26

February 2015 CA 19-9 = 21.7

February 2015 CA 19-9 = 20.6

March 2015 CA 19-9 = 21.2

April 2015 CA 19-9 = 19.7

May 2015 CA 19-9 = 23

May 2015 CA 19-9 = 26

May 2015 CA 19-9 = 35

June = started new chemo drugs

July 2015 CA 19-9 = 17

August 2015 CA 19-9 = 28

September 2015 CA 19-9 = 14

October 2015 CA 19-9 = 11

October 2015 CA 19-9 = 12

January 2016 CA 19-9 = 20+

March 2016 CA 19-9 = 60+

April 2016 CA 19-9 = 400+

May 2016 CA 19-9= 576

June 2016 CA 19-9 = 124

June 2016 CA 19-9 = 54

July 2016 CA 19-9 = 56

August 2016 CA 19-9 = 40

September 2016 CA 19-9 = 35

October 2016 CA 19-9 = 21

November 2016 CA 19-9= 24 

November 21, 2016 brain tumor detected

December 2016 CA 19-9 = 650

January 2017 CA 19-9 = 85