End of 2011

Dear Family and Friends,
It is so hard to believe that 2011 is coming to an end.  As I've said numerous times to numerous people, "it started out so fun"!  After close to a year of preparation, Chris pulled off a surprise party for my 50th birthday that was an unbelievable event.  A week later, I managed to break my leg (to put it mildly) and things went downhill from there.  Now, at the end of the year we are almost 2 months out from the devastating diagnosis of a rare brain cancer.  The most important things that the party, the fracture and the cancer have brought home to us is that we need to always remember that our God is a loving, gracious and merciful God and we must always put our trust in him; and that we have an abundance of loving, caring and supportive family and friends who will drop everything to be there for us whether it is to celebrate, to grieve, to laugh, to cry, to cook, to clean, to pick us up off the floor, get us in and out of the car...you name it, you have done it for us and for that we are forever grateful.

What a difference a week makes.  Last Saturday as we sat together on Christmas Eve, Chris was barely able to stay awake and had hardly an idea that we were celebrating Christmas.  He was not able to walk on his own, wasn't eating and was hardly talking.  Today, he is walking quite well again, is talking up a storm and his appetite is returning.  Yesterday Lisa came over for while and they sat on the patio and talked for awhile, then Cliff came over and went with Arlo to the therapy visit.  It's nice to have a couple of people who know the routine in case we need back-up - thank you Cliff.  This evening he had a visit from Heidi.  Unfortunately though, he is starting to lose his hair.  It started yesterday and is quite a bit more noticeable today, it seems to just be constantly coming out.  He says he doesn't really care though as it is part of the treatment and he has always said if his face was shaped better for a shaved head he would rather just shave it all the time.  It's probably more of a loss for me since I've always loved his thick, soft hair.  BUT, as he told me today, "it will grow back".

As we head into 2012, our New Year's wish is for all of you to enjoy a happy, healthy, and prosperous 2012 filled with love: love of family, love of friends and most of all, love of God.

Thank you for ending 2011 with us and starting 2012 with us.  We would not be able to experience the peace, hope and love we have enjoyed this past year without you.

Love to you,
Chris, Janet, Sam, Ryan and Jonathan    

Thursday, December 29, 2011

Well it's been 10 radiation treatments so had lab work done today.  One more treatment this week and then another 3 day vacation from driving out to Ontario.  I notice today that he is a bit more stable on his feet.  He was taking steps rather than shuffling and went from the bedroom to his chair in the family room without the walker and no leading him by the hand.  Hoping to see that progress continue.  He's staying up later in the evening also.  Appetite is still somewhat suppressed so we are working on that.

Conversations with Chris are interesting, to say the least.  Mentally exhausting too.  For some reason tonight there is a focus on rules.  He wanted to talk to me about the rules that have been made.  Then he asked if he can make any rules.  I told him of course he can make rules, what would he like them to be?  He said "Well if I can make one, the first rule would be that I am not allowed to make any rules."  I had to laugh at that.  He also thinks that this illness has been going on for 10 years and wonders what we have been doing for 10 years.  He remembers the cruise we went on for his 50th birthday, but wonders if it's weird for all of us to be married and did we all agree to it before we did it.  LOL!! So the way it stands then, Mike and Debbie, Allan and Melissa, Cliff and Barb - we are all in this together  :-)

Pill time and debate on how many pills he has to take.  Trying to make Norma believe that I said he doesn't have to take them all.  Yah, right - too bad for Chris, she knows better than that!

Diane and Roger - that ham is making some awesome leftover dinners.  Thank you again for bringing it over for us.  We love you.

Chris thinks the pills are working.  I hope so, if it isn't the pills then it's got to be the prayers!  Please keep  sending them up.

With love and gratitude for all the prayers, thoughts, wishes, support, etc.   CJSRJ

Wednesday, December 28, 2011

So everything seems to be fine today following the MRI yesterday.  No real change in status as far as balance or confusion.  Ian and Tonka flew back home this evening, Rob and Heather will drive back to El Dorado Hills tomorrow.  It was so nice having them here to visit and help out.  Rob and Heather took Chris to radiation therapy today which provided a nice break.  The spaghetti dinner they made last night was very good and also very much appreciated.  We have such a wonderful family no matter which way we turn.  We are incredibly blessed.
Chris is sitting at the table waiting for me to join him so he can sit with me while I do some stuff for work so I better get over there.  :-)
Till tomorrow...Love CJSRJ

Tuesday, December 27, 2011

Yah!  MRI done today with no apparent complications.  It was a long day spent at Kaiser, but it seemed to be successful.  The MRI tech said everything went well and then he went to recovery and all went well there too.  Rob went with Arlo to radiation therapy first this morning and spent the rest of the day at the hospital while the MRI was done.  Greg was there as well.  Rob has made arrangements to take Chris to Ontario tomorrow which will be nice.  Ian, Tonka and Heather made a delicious dinner for us tonight, and I want to thank Brett and Linda for letting Greg stay in your extra room this week.

Looking forward to an uneventful end to 2011.  Thank you for your continued prayers and support.
Love, CJSRJ

Monday, December 26, 2011

Sleeping off and on again today.  Did sit out on the patio for awhile this afternoon though which was nice and good for him I'm sure.   It's been a nice 3 day break with no where to have to be.  But tomorrow is back to it full speed ahead.  Radiation at 9 and MRI under anesthesia at 12:30.

Rob, Heather, Ian and Tonka arrived this afternoon and we had a nice dinner together.  They will be here for the next few days to help out in any way they can which is very appreciated and it is so good to see them.  Everyone, including Chris is watching the Laker/Kings game and discussing what would make someone think that changing their name to Meta World Peace is a good idea!

Hoping and praying that there are no setbacks caused by the anesthesia.  Please pray for us.
Love, Chris, Janet, Sam, Ryan and Jonathan.

Merry Christmas, 2011

  This is my holiday greeting card this year.
 
"...And he his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace"  Isaiah 9:6  Peace and blessings to you from our Lord and Saviour during this Christmas season and may he continue to bless you, keep you happy and healthy throughout the new year.  Merry Christmas to all of our dear family and friends.

Our boy was napping off and on again today.  Some of his sarcasm was back at dinner time which I am going to take as a positive sign.  No radiation again tomorrow, so nice to have 3 days of not having to take him anywhere or for him to have to get up and go anywhere.  Rob and Heather, Ian and Tonka arrive tomorrow for a few days. It will be nice to have them here.

Hope you all enjoy the rest of the holiday weekend with your family and friends.  Thank you for your good thoughts and prayers.  Love, CJSRJ

Saturday, December 24, 2011

Chris remains pretty tired most of the time.  He slept a good part of the day and evening.  He sat in his chair for a couple of hours while we opened Christmas gifts this evening but was sleeping most of the time.  A very difficult holiday celebration for our family, but at the same time a celebration that is bringing us all closer together and appreciating the love, support and importance of family.  From our family to yours, we wish you a very merry Christmas and hope that you are filled with the peace and joy that comes from knowing the Lord and Saviour who was born today to bring us hope and the promise of a life together with him.  Hold everyone you love close to your hearts and if there is conflict, find a way to resolve it.  Make the most of everyday you have with your loved ones.
As always, thank you for the prayers, love and support you shower upon us.  Merry Christmas to you all.
God Bless You...CJSRJ and Greg, Norma and Arlo.  We love you all.

Friday, December 23, 2011

Ahhhh, looking forward to 3 days of not being required to be anywhere!  Chris was pretty tired again today but was kind of awake when his Christmas present - a big ol' t.v. - was delivered and set up.  He wanted to watch it being set up.  Then, by the time they were done and left; it was time for radiation.  He is doing pretty well with the radiation treatments though.  He no longer is taking the Ativan prior to and tolerates the procedure well.  The treatment is fast, it hardly leaves enough time for the door to automatically shut and open back up!
So, like I said nothing to have to go to until Tuesday which is really nice.
The boys and I will be going to church tomorrow night for Christmas Eve, Greg will be here for the weekend and a few days next week and nephews Rob and Ian with spouses Heather and Tonka will be coming in on Monday for a few days.  It will be nice to see them and just to have them here.
Happy last minute shopping to those of you who have to finish up.
Keep us in your prayers while you are standing in line or stuck in traffic.  :-)  We will keep you in ours as well.  Love,  CJSRJ

Thursday, December 22, 2011

whoops, I spoke too soon.  Really rough night with nausea and vomiting last night.  Pretty big mess for the middle of the night, poor guy, just absolutely miserable.  Has been fine all day today though as far as nausea and vomiting goes.  Seems to be getting more and more sleepy and not eating a whole lot.  Also remains pretty confused about the time of day.  He went to sleep at dinnertime and woke a few minutes ago, got in the shower and dressed to go out.  when I asked him where he was going, he said to take care of that money thing.  When I asked him what money thing, he said well you obviously haven't been watching the news!  I guess he wanted to go out and take care of the government money problems.  Anyway, he thinks its morning so time to go somewhere.  I think it will be nice for the next 3 days (Saturday, Sunday, Monday) to not have to get in the car and go anyway.
I think it's about time to get ready and go to bed, so I will leave you here for the night.  Happy Birthday to my dear cousin Christine.
Thanks to all of you who continue to pray for us.  God is the only one who can take this away from us and bring back the Chris we all love and know.
cjsrj

Wednesday, December 21, 2011

Wednesday evening and time to write again for the evening.  Got a note from both Lisa and Dr. Lewis on the party yesterday.  As reported last night, Chris seemed to enjoy himself and was welcomed and attended to by most everyone there.  All day today he talked again about how so many people came to talk to him and that he enjoyed seeing everyone.  Thank you to all of you who made the day so very special for him.  I pray that he keeps that memory of happiness and love in a special place in his heart.
Chris seems to be tolerating the chemo and radiation pretty well.  No more nausea complaints and no more vomiting.  We haven't seen any signs of burns on his skin yet either.  He fatigues pretty quickly and sleeps on the way home from radiation but after a little nap this afternoon was awake for the rest of the evening.
Thank you to the Taylors for bringing dinner tonight and for staying with us to eat it!  That was a treat, especially since Brian was here too.   Dinner was delicious and the snowflake cookie from Sarah is beautiful.  Thanks to Melissa for bringing by some yummy Christmas baking as well.  Unfortunately, I missed my sweet Diane who stopped by with a ham and the ever present offer to help anyway she can, but Norma did get a chance to talk with her for a bit.  We just love all of our wonderful friends.
By the way, thank you to whoever it was that sent the Christmas basket of crackers, cookies, toffee, popcorn and other goodies.  It is a very nice basket and we appreciate the kindness and thoughtfulness of whoever it was that sent it.
Finally, tonight I want to thank Mike, Wendy, Michael and Jeana for the darling floral arrangement you sent for my birthday.  It was very sweet of you.
Let's hope and prayer that the treatment is starting to work and the longer episodes of alertness are just the beginning of Chris coming back to us.
With much love,  CJSRJ  

Tuesday, December 20, 2011

Wow, it must be closing in on Christmas - all the final activities that have to be done are keeping me up way past my bedtime.  Luckily, Chris doesn't have to worry about final activities so he is sleeping soundly right now.  Actually, he sleeps a good part of the day right now - chemo and radiation.
He was able to attend the office Christmas party for a little while today.  I'm not sure how it went, as I haven't heard from anyone that was there.  However, Chris said he saw a lot of his friends today and it was really good to see them.  Thank you to everyone who helped him out while he was there and thank you for all the love, caring and concern you all show him.  I can tell you that everyone of you are "one of my favorites"... I have heard that about every Kaiser person he has ever talked about.  He loves all of you and really just loves being at Kaiser and everything about his job.  Let's keep praying that he will be able to return to it.
Anesthesia clearance appointment scheduled for the morning so he can have the baseline MRI done next Tuesday.  Radiation in the afternoon.  So far no real problems with the chemo or radiation - thank the Lord for that.
I'm getting sleepy, so this will be it for the night.  Somebody let me know how things went at the party!
Keep us in your prayers, you are always in ours!
Much love, CJSRJ

Monday, December 19, 2011

Early morning today for radiation.  No problems though and Chris came home to sleep for awhile.  Allan came over to stay with Chris for a good part of the day, then was relieved for a couple of hours by Melissa.  The Steward tag team is so wonderful.  They sit here with him, get him dressed, feed him and make sure he takes his meds and after all of that, they still love him.  LOL  I know, I know...what's not to love?
Got a phone call from Ricky this evening and said something about not being able to eat chocolate.  I think Ricky called him on that one though. haha.  Everyone who knows him knows that chocolate will probably be the last thing that he will give up if he can help it!
Chris is really alert tonight compared to how he has been over the last week or so.  It's 9:40 and he's awake, watching basketball and isn't pushing to go to bed.  Yeah!
Tomorrow he's looking forward to seeing some of his friends from work.  We all hope it turns out to be a fun time and that he enjoys the visit.
Praying that this is the beginning of positive effects from the treatment...
With much love and appreciation for all the support and love we get from you.
CJSRJ

Sunday, December 18, 2011

End of the weekend again.  Radiation appointment at 7:30 tomorrow morning.
Saturday morning Chris had a little episode of nausea and vomiting, but fortunately since then has not had anymore problems with it.  His appetite still is pretty good but definitely somewhat less than it had been before he got sick.  The confusion continues, I wish that would just go away!

Randy and Becky from Chris's office came today to "Chris sit".  He enjoyed seeing both of them and the rest of us appreciate the opportunity it provides to participate in other activities.  Arlo and Norma took the opportunity to go play some golf this afternoon and Janet went to work in Santa's workshop for a while trying to get wrapping done for next week.  Greg was here today as well and it is always helpful to have him around to keep an eye on his baby brother.

So a full week of radiation and chemo ahead.  Hopefully we will see some progress by the end of the week.  Stay tuned...

With much love and appreciation for everything...  CJSRJ

Friday, December 16, 2011

Well, it's sort of Friday still...even though it's really Saturday.  Radiation and chemo day #2.  No sign of bad side effects:  no nausea, no loss of appetite.  He's tired though.  
Today he had a visits from Rick, his high school buddy; Clemencia ( who also brought food for us- thank you) and Jennifer, his BMC buddies and Dr. Osorio, his Fontana Psychiatry dept buddy.  And in between he visited with Maria, Marie, Judy, Carolyn and I'm not sure who else from Janet's office since her office Christmas party was at the house today.  He really enjoys the visits from people and I am so grateful to all of you who take the time out of your busy schedules to come by and see him.  It truly brightens his day.
Mom and Dad took him to radiation appointment today.  They are so great.  I just don't know how I would be able to handle all of this by myself.  And they are so patient and kind.  They will do anything for him -really for all of us.  Truly a blessing.
No radiation on Saturday or Sunday.  I will be taking the day off again tomorrow and report back on Sunday.
Thank you for your continued support and prayers.
With much love,
CJSRJ

Thursday dec 15 3pm

First radiation treatment done

Wednesday, December 14, 2011

quiet day again today though Chris seems to be a little more unsteady on his feet today.  Tomorrow, visit #2 for brain mapping and possibly the start of radiation therapy.
Thank you to the wonderful Taylors for both lunch with Chris today and dinner from Barb this evening.  You are awesome friends.
News on the treatment front tomorrow.
Much love and appreciation for the ongoing support and prayers.
CJSRJ

Tuesday, December 13, 2011

Another day of status quo.  Chris went with Arlo to Lowe's today and rode around on the handicapped cart.  Guess he thought it didn't go fast enough!  He's become a speed racer since he can't drive anymore. LOL
Plan is to try to play some golf again tomorrow with Arlo and Ryan.  Hope all goes well.
Thursday is 2nd half of the radiation mapping appointment.  Possibly they will start radiation that day, but we will see...
So, we will see you tomorrow and hope to have a good golf report.  :-)
Love,
CJSRJ

Monday, December 12, 2011

Not much new to report today.  Just want to thank Allan for spending his day here with Chris so that Mom and Dad could get some shopping done.  Chris enjoyed the opportunity to visit with him.  Allan said he probably can come back on Tuesday each week.  Karen and Christian brought dinner again tonight.  It was delicious and thank you very much!
Chris has headed off to bed for the night and has asked me to join him.  Tonight I am so tired, falling asleep as I type here, so I think I will take him up on that offer and go to bed myself.  Tired, tired, tired.
Tomorrow is another day.  See you all then.  thanks for your love and support, prayers and good thoughts. Dad says everyone have a good night, wherever you are.  :-)
Much love.  CJSRJ

Sunday, December 11, 2011

Can't believe the weekend is over again.  Our wonderful friends, the Buoyes, delivered and set up our beautiful, heavenly smelling Christmas trees on Saturday morning.  The house is so "Christmasy" with just that addition.  Chris asked Pete to please make sure and send his son, Chris (Ryan's friend and college roommate) over when he comes home from Fullerton because "Chris is so funny and always makes me laugh".  Pete promised he would send Chris over...anything to make our boy laugh, right Liz?  :-)  Thank you again Pete and Liz, you are very special people.

Saturday evening, Janet's friends from QM came over to decorate the house for us.  What a blessing and so wonderful to see the season coming together once again in the house.  Jane and Rick, your decorating skills are terrific and the baked goodies you brought are delicious as well.  Major calorie time.  lol  Charlotte, it was so terrific having you and your family here to decorate.  Jade, Isaac and Juanita...it was so nice to meet you and we love everything you did for us.  Jade, you are well on your way to being a fabulous decorator and what sweethearts you and Isaac are.  Thank you for coming over and helping us.  The cupcakes were so very yummy.  It's hard to pick the best one since they were all so good.  You did a really great job picking them out.  Char, your idea to come decorate is so very much appreciated and to have you and Jane here to help us out this way is so touching.  Thank you!

Chris's confusion seems to be hanging on.  We just keep trying to bring him back to reality for things that matter and for the rest we just kind of agree with him and move on.  He has been sleeping a lot yesterday and today.  Friday too, but that was after the Ativan for the CT scan so that didn't seem too unusual.  I just pray that the treatment will start to make a difference fairly quickly once it gets started.

Got to go take care of a few Christmas chores so will sign off for the night.  Please keep us in your prayers, you are always in ours.

Much love,
CJSRJ

Friday, December 9, 2011

Radiation Medicine appointment this morning to do the mapping via CT scan for determining where to point to radiation.  Not much to report except that with the Ativan on board, Chris did fine with the mask they had to put on his face.  He will need to wear the mask each time he has radiation so knowing that he can handle it with the Ativan is good to know.  This is a part two part process and the 2nd part will be done next Thursday.  The doctor there said it is possible that the first radiation therapy session will take place immediately following the 2nd half of the mapping.  So, if not next Thursday, it should be very shortly after that, like either Friday or Monday.  Chris was fairly confused again this afternoon.  He did not clearly remember that Carlos and Lisa had both been here today, and he thinks he has an appointment tomorrow morning and that Lisa is coming over tomorrow and bringing dinner tomorrow.  It is so frustrating to hear and see this confusion.  I can't imagine how frustrating it is for Chris and can only hope that most of the time he doesn't realize how confused he is.

As mentioned, Carlos was here at noon and brought lunch which Chris seemed to be enjoying as I left to go to work.  Unfortunately I think Chris slept much of the time that Carlos was here.  The ativan works for his claustrophobia, but it does make him very sleepy afterward.  Lisa came a little later and brought dinner.  I think Chris was awake more of the time that Lisa was here, so that is good.  Even though he sleeps during some visits, Chris still appreciates the time spent with him and enjoys the visits with everyone who comes.

So I was talking to Dr. Fitz at Loma Linda today and he told me about one of the physicians at Loma Linda who was diagnosed with brain cancer 3 months ago.  Dr. Fitz said the diagnosis was similar to Chris's, with a very similar story.  The really good news is that Dr. Fitz saw this physician a few days ago and he is back at work.  This is what we are praying for with Chris!!  We'll just keep praying for it.  Hopefully we will see progress fairly quickly after the treatment starts.

Unless something extraordinary happens tomorrow, I will wait until Sunday evening to post an update for the weekend activities.

thanks again to Carlos and Lisa for visiting today.  thank you Carlos for bringing lunch and Lisa for bringing dinner.  We enjoyed all of it.

Lois, your email made me laugh, thank you for that.  Have fun with His Majesty and we will work on that You Tube moniker.  LOL  Hope all goes well with your daughter-in-law and the pregnancy.  Keep those diapers handy.  LMAO!!!

Hoping to get the Christmas trees up this weekend and Jonathan started putting the lights up this evening.  Hopefully we will get both things done by sunday evening.

Talk to you all soon (most likely Sunday)
Love,  CJSRJ

Thursday, December 8, 2011

Back from the night in L.A. and the visit to Kaiser.  Stayed in a really nice executive suite at the Hollywood Renaissance which looked out on the Hollywood Hills, the Hollywood sign and the Magic Castle.  Would have been fun to do some exploring while we were out there since even though we are so close, we never go out there.  Got in the elevator last night to go to our room.  Needed the room card to access the floor the room was on.  I got out, turned around and the door was closing before Mom and Chris could get out!  They didn't have the room key, I still had them in my hand.  There was no way for them to get back on the floor and Chris didn't think they were going to get out of the elevator.  It was rather funny, we ended up having to get security to pick them up in the lobby and bring them up to the room.  Then on the way down the hallway as we were leaving this morning, Chris has lost so much weight that his pants were falling down and were just about around his knees!  So, mom grabs ahold of his pants from the back and holds them up while he walks down the hall.  Chris says "Norma, you can take care of everything!!"  (We had forgotten to bring his belt along).

So we got to the kaiser office and met first with the Physician Assistant, Emily who was very nice.  she reviewed the records, the scans and the meds.  Did the mental status exam and asked questions.  She told us that Chris would start the chemotherapy drug on the same day as the radiation therapy starts.  He will take the pill every night for 42 nights then a 5 night a month maintenance dose for 11 months.  After a little bit of a wait, Dr. Green came in and talked to us for a few minutes.  He is a very nice, youngish doc.  He reviewed the chemo med regimen with us and said he does not feel there is very much swelling in Chris's brain so is going to wean him down on the Decadron (steroid) from 4 mg 4 times a day to 2 mg once a day.  I should think that will make a difference in how he feels.  so Chris asked the same question he asks all doctors he sees which is "Will I be able to go back to work?"  Dr. Green said he did not see any reason why Chris would not be able to go back to work at some point.  He feels the chemo and radiation will work well and this is not the end of life scenario that has been painted for us by others.    Lord, I pray that this is true.  Wouldn't that be an awesome answer to all of the prayers that have been going up?  We all thought the visit with Dr. Green was very positive and I left with a good feeling in my heart.  Tomorrow morning is the CT Scan appointment in Ontario to do the brain mapping for radiation.

Thank you to the Stewards for delicious chicken stew dish for dinner and Anna's cookie exchange cookies for dessert - yum.  Also, thanks to Maria for showing up at work yesterday with a pot roast and bread.  It was yum as well.  I think I've mentioned once or twice how very blessed we are, but it bears repeating!  thanks everyone.  Keep those prayers coming.  We love you all.  CJSRJ

Tuesday, December 6, 2011

so today was the golf outing.  Chris said he played about 3 or 4 holes then did some putting.  He said it was definitely a challenge and it was frustrating that he wasn't able to hit the ball very well.  We all think it is great that he is able to hit the ball at all!!  He thinks he probably is a few weeks from really being able to go to the golf course and try to play.  He said at least he got out and did something other than sitting around the house suffering through daytime t.v.  He said he fell one time getting into the cart.  he feels there was quite a bit of difficulty with the transition from hitting the ball to getting back into the cart.  he says he enjoyed the outing, but I'm not sure how much he really did.  In any case, thank you Dad and Jim for taking him to play, and to Ryan for joining them later on.
I wrote up the summary from yesterday's activities for him and left it for him today.  he says he thinks it was helpful.  It's a little harder since I'm not here to keep track of the activities and how long things go on so he likes to correct the inaccuracies in my summary...brat!!

Got a call from Best Doctors this morning.  Yesterday they sent Chris's case off to the specialist for an opinion.  they are hoping to have a response by thursday, but are not promising anything.  In addition, until we get the report back, they do not disclose who the specialist is or where he/she is located.
 
We are both pretty tired this evening so I think we will be going to bed now.  Tomorrow afternoon we will leave for Los Angeles.  Mom is going to come along just in case we need an extra pair of hands.
Keep the faith.  Keep us in your prayers, we will keep you in ours.
Much love,
CJSRJ 

Monday, December 5, 2011

Hello everyone.  Here we are at evening time again.
Chris started out the day with a shower and shave - all by himself.  Home Care called about coming out today and he told them he didn't think they needed to come since he had already cleaned up himself. :-)  Carlos came to visit today and Chris said it was another great visit with a great friend.  After a quick nap and lunch, it was time for a visit with our primary care physician who said the incision site looks good following the staple removal and decreased one of his blood pressure meds since he continues to have a lower blood pressure since coming home from the hospital.  This evening, Karen and her son Christian - one of Jonathan's friends from Sacred Heart Academy came by with a pot of yummy chicken soup and a delicious mixed berry pie.  Dinner was very enjoyable.  Following an evening of t.v mixed with a few phone calls including the two Jim H.'s that we are lucky to call our friends, a nice visit with Ryan and his buddy Alex, Chris has gone off to bed.  He is concerned about things that he is confused about and is worried that he is, has or will miss important dates related to our kids and that things he needs to know about will slip by.  He is also very worried that he will not be able to return to work and I think that bothers him a great deal.  He loves his work so much and he really loves all the people he works with.  He is not ready to quit and is certainly not accepting of being forced into quitting because of an illness.

Tomorrow is the scheduled golf day.  I hope he gets to play but the weather man isn't being very cooperative.  It sounds like it may be quite cold and windy tomorrow.  Tee time is set for 10:45 though and I guess we will wait and see.  Chris, Dad and Jim are planning to play, Greg has to skip it this time since he is swamped at work but Ryan hopes to be able to join them once he is done with class in the morning.  Dad was having some back pain today too so hopefully it won't keep him from playing either.  Hopefully he will wake up tomorrow with no back pain at all and will have a great game.  Let's pray for good weather, good health and a successful golf outing tomorrow!!

I'm sure you have seen the comment from James in Texas who is suffering from the same cancer.  He asked me about CaringBridge which is not something I had heard of.  Lois has graciously looked it up for me and sent me the link to take a look at.  Thank you Lois!  I may switch the blog over to that site.  If I do, I will be sure to let everyone know.

I told Chris I would write up a little summary of his day for him to read the following morning in an attempt to help with some of his confusion.  He also said that the medical supplies we had in the bedroom from when he was discharged was also making him confused so I have removed those items from the bedroom and hope that will help him.  I need to get in there and do a bunch of cleaning up but just don't have the time right now.  Eventually.....

So, I'm off now to take a shower, write up the summary, handle a couple of other small items and go to bed.

With much love,
CJSRJ

reply to James

My name is James and I am a 29 y/o Male in Houston, TX who also has Gliomatosis Cerbri. Would like to connect with you if at all possible, however have been unable to post on your blog. Do you have a CaringBridge?

Speak to you soon.
James
Hello James,
I am so sorry to hear that you have received the same diagnosis.  I don't know what CaringBridge is, so my answer to that question is no.  I have setup the blog to allow reader comments so I'm not sure if you are trying to do something besides that or not.  I would be happy to connect with you.  Please email me at jmarsey@llu.edu and perhaps you can enlighten me on CaringBridge.  Glad to hear from you, thank you for contacting us but I'm sorry it is under these circumstances.
Take Good Care and God Bless You.
Janet

Sunday, December 4, 2011

Ok, I'm falling, falling, falling behind on keeping the updates going.  I realized part of the problem is that I haven't been able to get to my computer very often. lol  Anyway, great day today with Patty, Ted and Greg here helping out.  Ted and Jonathan put some insulation in the attic above the office and Jon's bedroom but the rest of it needs to be done after some of the ducting is moved out of the way.  Jonathan did a great job according to his uncle, Ted, and if Ted says it was a good job, then it must have been!!  Jim and MaryBeth came up from Poway to visit and it was good to see them.  Heidi from Chris's office came to visit for a bit this afternoon also and brought something on a plate that looks like it will be good when we open it up.  :-)
I know I have said this before and I will continue to say it again and again...we have such wonderful friends and family and we very much appreciate everything everyone does for us.  I think Chris continues to look a bit better everyday as his body gets used to the medication he is on.  He's been up all day today and is now standing over my shoulder to see what I am saying about him.  Arlo and Norma got a chance to go play golf today which makes me happy.  Sam and Ryan were supposed to work out getting the Christmas lights up today but since Sam is still sleeping and Ryan will be leaving for work in about an hour, it looks like no lights today.  BOYS!!!
I'm thinking it might be a good idea to drive to L.A. on Wednesday night before the oncology appointment on thursday morning, so I'm going to check on hotel rooms now.
Barb, I hope you are doing ok today.  I love you.
Christmas time blessings for everyone.
LOVE, CJSRJ

Saturday, December 3, 2011

Sad news today, Aunt Elaine has gone to join her husband, daughter and brother along with the rest of the family who are in heaven now.  What a wonderful lady, so sweet and funny.  Our boys certainly loved her, just as Chris, Greg and I did.  I wish we had been able to spend just a little more time with her.  isn't that always true with the ones we love that leave us?  God Bless you Aunt Elaine, we love you.  Barb, Bob, Steven, Tara and Kai our prayers and love are with you.

oops, missed Friday, December 2

Fell asleep watching tv last night and didn't get to the blog.  Sorry!
Chris had a visit from the home health aide who helped him shower and get ready for his doctor appointment.  Norma, as usual fixed him a breakfast of his choosing...omelette today.  Certainly not a mother-in-law to complain about, not that he ever does.  Lisa came to visit today and brought a beautiful candy wreath from Becky.  Thank you Becky; and Lisa, your visits are always a bright spot in his day.  Went to neurosurgery and had the train track staples removed.  Dr. Tashjian was very apologetic about the way the closure was done and the number of staples put in Chris's head by the resident.  I will post the picture on the front page of the blog.  Dr. T said he was happy to see how good Chris looked compared to how he looked the last day in the hospital.  It is true, he does look tons better.  I'm sure it's the TLC he gets at home. :-)
Jim and Marie brought dinner and a fun evening of fellowship.  The tri tip was delicious as were the potatoes, beans and salad.  Oh and let's not forget the cheesecake and the wine.  Jim, Chris, Arlo and Greg made tentative plans to play golf on Tuesday.  Wouldn't that be fabulous?  Stay tuned.
Chris's sister and brother-in-law were going to head down for a visit yesterday morning but Ted woke up with a backache.  Went to the ER and turns out he had a kidney stone which he passed.  They loaded him up on Morphine, Patty loaded him into the car and they drove down last night.  We expect to be seeing them anytime this morning now as they decided to stay in an area hotel.
Looking forward to a lovely but windy Saturday.  Check back this evening for events of the day.  :-)
With much love, CJSRJ

Thursday, December 1, 2011

Chris got up and showered this morning, exercised during the day with Norma's prompting and then had a really nice visit from Allan and Melissa following by an equally nice visit from Pete and Dan who brought dinner as well.  The chili was delicious and just perfect!  Chris so enjoys the visits from friends; especially those who bring food.  lol  just kidding.  We love everyone who comes to visit, with food or not.  Janet got home from work and aunt Ann and 'Uncle" Bert were here to visit.  That was nice.  Appointment tomorrow get the staples(railroad) removed.  Patty and Ted wll be down for a visit this weekend.  Hopefully mom and dad will get a chance to go out golfing or get some kind of break.  So, I'm tired and need to bed so i cn work in the morning.  God Bless you all.  You are in our prayers.  CJSRJ

Wednesday, November 30, 2011

Went to radiation therapy appointment this morning.  Met with Dr. Hahn who is a very nice lady.  Chris likes her. Dr. Hahn confirmed the diagnosis of gliomatosis cerebri and talked about the effectiveness of the radiation therapy.  She said the treatment plan would be to do therapy 5 days a week for 5-1/2 weeks.  However, before starting she wants to review the case in "case conference" tomorrow in order to get input from all specialties.  In addition, she said we won't start anything until after Chris sees Dr. Green, Neuro oncology in Los Angeles.  Both chemo and radiation are part of the treatment plan and decided on together for the whole picture rather than separating the two types of oncologic treatment.  We see Dr. Green on Thursday morning the 8th and then have a CT mapping appointment with Hahn for preparation for the radiation treatment.  Dr. Hahn said Chris will have to wear a kind of mask for the rad treatment so w will see how that goes since he is so caustrophobic.  Hopefully a little ativan or zanax will solve the problem and he will breeze right through.
Meanwhile, received a phone call from Dr. Butowski who provided the results of the tumor board 2nd opinion from UC San Francisco.  Unfortunately he too confirmed the diagnosis of gliomatosis cerebri and said that the chemo drug that should be used for treatment is called Temodar.  This is the same drug that Dr. Miller, the hem/onc doc in Fontana told me about when he came for the hematology inpatient consult.  Still waiting for the opinion on the pathology from Best Doctors.  Staple removal appointment has been rescheduled from tomorrow to Friday.
Well, we had the pleasure of dinner provided by Barb and Cliff Taylor.  The BBQ beef was so tender and tasty on the fresh rolls.  My sister will be so disappointed that she missed cheesy potatoes.  The salad was really good and the cookies were delightful!!  Thanks you guys for bringing the dinner.  It was nice seeing Eric too.  We are blessed to call you our friends.
Join me in saying goodbye to November and hello to December.  Our 2011 Christmas promises are on their way.  Keep us in your prayers, we will keep you in ours.  CJSRJ 

Tuesday November 29, 2011

Hard to believe it is the 29th of November.  Also hard to believe that all of this has happened in such a short time.  Saw my friend Carolyn tonight and even though the last time I saw her was just last month, it was before we even had an inkling of the events that were to come in the time that transpired between then and now.
Colleen and Randy went home today.  :-(  As I told them, I don't even have the words to express my gratitude for the love and support they have given us since the beginning and especially this past week while they have been here.  What an incredible blessing they are.
Chris was up all day today.  Physical Therapy was here for a session and left instructions for home exercises which Norma made sure that he did tonight.  He tried to get out of it but she won't be having any of that!  Last night Chris was up several times during the night and at one point, fell in the bathroom so Arlo installed a grab bar and made sure that any areas of safety concern are covered with pillows tonight.
Lois drove up from Carlsbad for a visit which was very appreciated and very much enjoyed.  We will plan to start working on the "Chris sitting" schedule tomorrow.  After we find out what the plan for radiation therapy is tomorrow morning and have a good idea of when we would need some help, I will post the times that we are looking to fill as I think it will be easier to do it that way than to try to call everyone on the list.  Some of the times may be during therapy sessions as physical and occupational will be going on during the week as well.  As I am going to work during the week, much of the activities with Chris are left to Norma and Arlo.  I am hoping to get as many people as possible to help relieve them from the responsibility of always being the daytime caretakers.  They may not ask for it very much, but they will definitely need a break several times during the week.  I'd love to see them get a scheduled golf day each week where they can plan to go play 18 holes.  That will be one of my primary goals when the schedule for sitting is made.  
Conversations with Chris right now are a combination of reality mixed with confusion.  I'm hoping that the confusion continues to stem from the medications that he is on and will decrease as the chemo and radiation therapies begin to work on the cancer and the medications for swelling are decreased or even discontinued.
So, radiation therapy consultation tomorrow and we'll go from there...
As you pray for us, would you also include Chris's cousin Barb and Aunt Elaine as Aunt Elaine has been placed on hospice.  We wish we could be of more support to them right now than we can be, but we can keep them in our prayers and ask for those supporting us through prayer to support them as well.
With much love,
CJSRJ  

Monday, November 28, 2011

Here we are at evening time again.  Must be the holidays...the Grinch is on t.v.
Only one more night with Colleen and Randy here. :-(  I will miss them both so much when they go back home.  What a tremendous blessing they have both been.  Colleen spent most of the day on the phone today pretending to be me so she could get appointments scheduled for Chris.  Randy does a great job of keeping Chris on task with his walking and getting around.  I love them both so very very much.  Chris was up all day today and quite a bit of his conversations can be so appropriate, then he will throw in a few things that make absolutely no sense.  So we have an appointment scheduled for Wednesday with radiation oncology and Thursday with neurosurgery for follow up.  Then, next Wednesday we have an appointment with the medical oncologist in Los Angeles.  Phys Therapy will be here tomorrow and Occupational Therapy along with a home health aide will start coming sometime this week or next.
Looking for small improvements every day which we have been seeing, so I am happy for that.
Please continue to keep us in your prayers and we will continue to keep you in ours.  Much love, CJSRJ

Sunday November 27

Almost 10pm and Chris is complaining about the number of pills he has to take.  13!  "You've got to be kidding me, those are NOT all my pills."  "Yes, honey those are all yours to take."  "But there's 13 here."  "Yep, 13 to take".  And now he's done...one at a time till they are all gone.  poor baby, that's a pile of pills to take!  So we just finished dinner and chocolate cake for Ryan's birthday.  Happy 21st Ryan.  We love you sweetheart.  Chris had a bit of a fever last night but it was gone by this morning.  Also he has an odd bruise on the inner corner of his right eyelid - not sure where there came from and why it's there.  Same side as the biopsy site.  Guess I'll be asking the neurosurgeon about that.  He slept a good part of today but I slept pretty long too so I'm not really in any position to say anything...not that I would.  Had a nice visit from Cliff and Barb today.  Cliff brought cookies that he and Chris had talked about last week.  So nice to still have Colleen and Randy here.  I will be sad when they leave on Tuesday and so will Chris.  Randy won't be here to make sure Chris walks and Colleen won't be here for him to hug.  But Mom and Dad will be here for whatever it takes ---however long it takes.  bless them.  Keep the prayers and good thoughts coming.  We love you, CJSRJ

Saturday, November 26, 2011

Evening and waiting for dinner time. Dad (Arlo) is making prime rib tonight. Cheesy potatoes as requested by Colleen since we didn't have them for thanksgiving dinner. Chris got up this morning, ate breakfast and slept for awhile in his recliner. He woke up and Randy had him walking around the pool a couple of times and up and down the hall a few times. Randy and Dad helped him shower and shave then he went to sleep for the rest of the afternoon. He's awake now and watching twilight zone with Ryan. He's taking his pills good but complains about it every time we have to take them. hahahaha You know, it's so weird that this is causing such a problem with his brain. As he is watching twilight zone he tells Ryan "that is Albert Salmi". Now I don't have a clue who Albert Salmi is and neither does Ryan but sure enough google Albert Salmi and he is an American actor who had several roles in Twilight Zone. Who can have a brain tumor like this and still be so with it on so many different levels???? I just don't get it. And it just really hurts my heart to see it. Today Chris is again trying to convince Colleen and Randy to move back to California...wouldn't that be nice? Waiting for Sam to get home from work so we can eat. Tomorrow is Ryan's 21st birthday.  So until tomorrow,  thank you for journeying along with us and God Bless.  Love, CJSRJ

Friday, November 25, 2011

Just back from the lab where they took blood to check the platelet count. Hopefully it is good. Had an uneventful night, Chris slept well. Mom made him eggs this morning then at noon had 1/2 a burger from In-N-Out. PT came out for initial evaluation this afternoon. They will continue home PT two times a week for several weeks. OT will be out next week. There is an order for Speech Therapy as well but it is not available through Home Health so we will have to go to the clinic for that. Don't think we will be doing that anytime soon. Took a fall this morning as he was getting out of bed and hit the back of his head on the nightstand. Ouch! Seems to be ok though. He's on a campaign to get Colleen and Randy to move to California. He is having a "secret" conversation with her right now to get her to move. A lot of loose association going on. It would be funny if it wasn't so damn sad. Anyway, he's back in bed now to rest. Leftovers for dinner and tomorrow is another day. Hope you all had a wonderful Thanksgiving and those of you who went shopping today, hope you stayed away from the mace sprayers!! Love you... CJSRJ

Happy Thanksgiving!

So this morning I woke up to a chatterbox next to me!! Janet: "Where have you been?" Chris: "who, me?" Silly boy. He was talking to mom and Randy, he ate 2 eggs and toast, drank 4 boxes of Orange Juice, Swallowed all of his pills without having them crushed and never chewed any of them, got up and walked to the bathroom, sat for a bit then got up and walked back to the bed. he's napping now. I was shocked by the change in him this morning, but so, so happy to see it. Let's pray that it continues to get better each day. Randy says next time he gets up we will put him in the shower. I bet that will feel good! This truly is a happy Thanksgiving for the Marsey family. If I didn't have a bum knee, I'd be dancing in the streets!! Love, CJSRJ

Wednesday, November 23, 10:45pm

Whew!! We made it!! Chris is home and now sleeping in his own bed with his sweet sister-in-law keeping watch over him. Allan and Melissa cooked up some lasagna and made sure we were all fed tonight. Sent over some of that wonderful wine too. Colleen and Randy made it in and were here to help get Chris settled in bed once we got home. Randy plans to get him up and moving around tomorrow - he's a terrific brother-in-law. Prayers and God's grace have brought us this far and we expect will take right along down the path we will be traveling. Happy Thanksgiving to all of you and we pray that you have a special day with whoever you are spending it with. God bless you all. CJSRJ

wednesday nov. 23 5:15

Waiting for meds to be filled, iv to be discontinued and them get him dressed and we will be on our way home.
God is so good to us.

Wednesday, November 23, 2011 Noon

We will have a Happy Thanksgiving and are very thankful that Chris is COMING HOME TODAY!!!

Tuesday, November 22, 2011 9pm

All in all, today was a promising day. Allan came to sit with Chris this morning. Another one of our many blessings...a dear friend who gives up his morning to sit at the hospital. He said they got to talk a lot which is really good to hear that he is awake enough to talk. P.T. came and they walked 160 feet today. More friends from the office came by including Carlos, Dr. Michael, Becky, Carolyn, Randy and Lisa. Aunt Kathy was up from San Marcos. Mom, Dad and Greg were in their usual spots by his side, helping him to eat, sit, walk, move, whatever he needs...they are there to help and love him. Carlos brought tacos and chili rellenos which Chris was able to eat and enjoy for both lunch and dinner. Eva, from Janet's office brought in dinner for us that her mom made. (It was delicious and thank you so much!) Lisa D brought more Amish Friendship bread - a loaf with nuts and a loaf without nuts, lol. Kathryn from Chris's office baked us an apple pie for Thanksgiving - so sweet of her. We have had numerous offers for grocery shopping, cooking, cleaning, decorating, chores, etc. Everyone is so very kind and so very willing to help in anyway...so many blessings.

Hematology/Oncology consult was done this afternoon. Dr. Miller came mostly to talk about the decreased platelets because all neuro oncology is referred to Dr. Green in Los Angeles at Kaiser Sunset. Dr. Miller said several things can be contributing to the decrease including the heparin and dilantin he is on and simply the surgery in the brain. There is also some lab work that has been sent out relating to the platelets and antibodies. Regarding the cancer treatment, Dr. Miller said that radiation therapy is the primary treatment and that can be done in Ontario and the chemotherapy is usually an oral medication that can be taken at home. I just want to get the ball rolling so he can start feeling better. But first he has to be discharged. So, Dr. Tashjian (neurosurg) came in this evening and when I told him I would like to have Chris home for Thanksgiving, he said that would be really nice and he would work on getting him discharged tomorrow afternoon. He has to talk with Neurology to see about changing the Dilantin to something else along with a couple of other things. If all works out the way we hope, he will plan to have Chris on his way home by 2 or 3. I just pray that it all comes together so he can be at home where he belongs. He sat in the chair in his room for a couple of hours this evening and ate his dinner. Carried on some interesting conversations, then a little while after Greg got there he decided it was time to go back to bed and rest. When I left he was sleeping and his big brother was watching over him.

During this week of Thanksgiving we have so many things to be thankful for. Family and friends who love and care for us, family and friends of family and friends who love and care for us, and a Saviour who loves and cares for us and who knows the plans he has for us. We are thankful for you all and pray for a wonderful Thanksgiving celebration for all of you as well. Colleen and Randy fly in tomorrow. YEAH. Pray with us for discharge tomorrow. God Bless You! CJSRJ

Monday, November 21, 2011 11:45pm

Me and Mom just back from the hospital. Chris had several visitors today; Cliff, Carlos, Dr. Kozman, Ron Ogitani, Cliff again, Dr. Sahiba, and Lisa who came with a very cute Snoopy and Woodstock from the Psychiatry office - but really from Becky...hope I didn't miss anyone. So many people love him and are sending good wishes and prayers it's hard to keep up with them all. But I am not now, nor will I ever be complaining about that! We are so very blessed. Dad and Jonathan stayed with him last night and he had somewhat of a restless one. Two new medications were added following the seizure yesterday so between that and the restless night he was very sleepy this morning. Sam came in to dad-sit at 7 and was a bit disheartened to see that Chris was so sleepy and unable to wake up enough to take his meds, eat his breakfast or walk with P.T. Ryan came for his shift this afternoon and found Chris still sleepy. When his visitors arrived, he woke up some and talked a little. I arrived about 3:30 and made him sit up and eat some, then asked him to get up and walk with P.T. so that he can come home soon. Talked with the neurosurgeon this afternoon who said if Chris isn't able to walk and feed himself soon he will have to be discharged to a skilled nursing facility. We don't want that so we are pushing him to do things in order to get stable enough to come home. Another CT scan was ordered to make sure there is nothing unusual going on like a bleed or something. The platelet count is low so he received a bagful of that this evening. Chris was pretty alert until about 11. He talked quite a bit - not always making sense but talking nonetheless. I think he is definitely ready to come home, so I'll keep that thought at the front of his mind so that he does all the things that need to be done.
Thanks for all the comments on the post and the Facebook messages. You know we appreciate them. I hope you don't mind that I type so much of the details of each day. It's for me as much as it is for all of you. It also helps Chris piece the details together when he get home. I've noticed on the post comments that not everyone knows how to post a comment. I'm not sure i can help, but I think you actually have to sign up for an account before you can leave a message that I will get anytime via my email.
I am sleepy and need to get up for work in the morning so I will sign-off now. thank you for everything you all provide for us. We love each one of you. - CJSRJ

Sunday, November 20, 2011 4:30pm

An exciting morning at the hospital. Carlos came to visit for a couple of hours this morning and had Chris sitting up and talking most of the time he was there. Put the color back in his face and brightened up his affect a bit. Janet's cousins Jeanne and Jason came by for a few minutes too. Chris recognized both of them and talked to each of them. Our new sweet, sweet friend, Jamie stopped by and talked for a bit. Chris got up out of the bed and walked about 130 feet with the physical therapist and using a walker, then the pt care assistant shaved his face and washed him up a bit. Oh, he was doing so good and the progress he was making was so encouraging! Then he had a seizure :-(
The seizure was the same as what he had been having prior to the biopsy. He became very lethargic and it took about 10 minutes before the nursing staff were able to get him moved back to his bed. Once in bed, he promptly went back to sleep. The chief of Neurosurgery came in to see Chris this morning and said his incision site looks good and that some of the staples can come out soon. He said he would like to see Chris walk a couple of times around the nurse's station before he is discharged - that's why I was so excited to see him walk the distance he went this morning. I so want him home, especially for Thanksgiving. Thanksgiving dinner has always been his favorite meal.
As always, thank you to all our wonderful family and friends for your love and support, the prayers and prayer lists you have put us on, the offers of help, the cards and food. It is so important to us and we can't imagine how those without this awesome network can make it through an event like this.
Please continue to keep us in your thoughts and prayers and we will keep you in ours. CJSRJ

Saturday, November 19 1pm

Just got a call from Norma who is at the hospital with Chris. She said Chris is missing me and wondering where I am. This is a first,so I hope that means he is doing better. I am on my way to the hospital now. :-) Janet

Friday November 18

The results of the biopsy are back. Sadly, the diagnosis is cancer. Chris has a grade three gliomatosis cerebrii. This type of cancer is not operable because it is not a single tumor. It is located throughout the brain, and the average life expectancy is 1 to 3 years. Chris is being referred to the Kaiser Southern California regional oncologist in Los Angeles. The neurosurgeon expects that the treatment will be chemo and radiation therapy. In the meantime, Best Doctors has been gathering the records related to the case, and is working on obtaining the pathology so they can have it retested at Brigham Women's Hospital in Boston, the neurosurgeon has referred us to UCLA for a 2nd opinion and we are looking at a possible opinion from UC San Francisco. I am pretty sure that Chris understands the diagnosis but he still doesn't talk much. I just pray that this cancer is not so aggressive that it is causing him to deteriorate more each day. It's so hard to say right now what it is that is causing him to be sleeping most of the day and somewhat uncommunicative. He recognizes us and knows where he is, I'm just not sure about the rest. Chris is not ready to be discharged yet, possibly Sunday; however he isn't ambulating yet. It's possible that if he isn't able to get up and start taking care of himself fairly soon, he may have to go to a skilled nursing facility for a bit. Arlo is working on putting a schedule together for people to come help "Chris sit" once he gets home. If anyone is interested in coming to help out for a few hours during the day, please let me know. I hope this makes sense, it's just so hard to write about this. I have been dreading having to write this one that puts out the bad news. I so wanted it to be the good news blog. Please keep us in your prayers, and you will continue to be in ours. Love, CJSRJ

Thursday, November 17, 2011 1pm

Another long night last night. About ten he was transferred to room 2119 on the med/surg floor. Chris was still very restless and pulling off the ekg leads, the blood pressure cuff, the pulse oximeter and then at one point yanked the IV out of his hand. Sam and Janet stayed with him until 3 to keep him from pulling everything off, then Janet's dad Arlo came and Sam went home to sleep. The nurses tried twice to put in a catheter and were unsuccessful both times. The one thing he dreaded the most about having this procedure was the catheter insertion. For surgery they put it in and pulled it out while he was under anesthesia but they put another one in while he was in recovery Tuesday night - no anesthesia, and then twice last night - no anesthesia and just caused him such pain and distress. It was horrible for him, Janet felt so so bad. Anyway, with Arlo watching over him, Janet slept for a few minutes. Janet's mom, Norma came at 6 so with the two of them watching over him, Janet slept for a few more minutes then left to go to work. This morning the neurosurgeon came in and said he thinks the restlessness and confusion is likely from the higher dose of steroids he is taking to decrease the swelling. Dr. said he would start tapering him off the high dose now and see how he does. Chris was also bleeding a bit from a site close to the incision point, not sure what happened but assume he scratched it open since he keeps trying to scratch that area. When the Neurologist came in this morning he cleaned up the site, replaced some of the staples - which I'm sure didn't feel good either. He also said he thought Chris was too sedated from the Morphine they gave him to help relax him and handle the pain from the catheter attempts. He said he was going to give Chris something to counteract the sedating effects of the morphine. Norma said when he is awake now he is more alert. He is also able to tell his birthdate and age today. Yesterday he knew the birthdate but tried to make us believe he was 23 and if not 23, then 27 or 38. Nice try honey but that gray hair screams 53! Physical therapy came in this morning and got him up in a chair for 45 minutes. No walking yet so probably not going home today. Also was going for a CT scan today apparently as part of the protocol and not because they are looking or expecting to find anything. Greg and Jonathan were there to visit last night, and Ryan is over there today with Arlo and Norma. That's it for now. We continue to pray for God's mercy and grace, for peace and for healing. We know that all of you are doing the same. We love you all and are keeping you in our prayers as well. Talk to you later. Love, CJSRJ

wednesday nov. 16. 5:30 pm

Must have been so sleepy this morning that I saved the morning post as a draft rather than publishing it. So sorry!
So Janet back at the hospital. Chris still in icu due to bed availability on a med/surg floor. It's just as well with me if they leave him where he is overnite. Guess we will see. Arlo said Chris slept most of the day. Jamie, our nurse pal said he was pretty much the same during the day from a neurological standpoint. Still the waiting that drives us crazy the most. Tom and bonnie stopped by with a card and beautiful God sentiment. Thanks you two, we love you and hope you a lovely thanksgiving in Hawaii. Bring me back some sunshine! So that's about it today. Doesn't appear to b having any seizures today. His anti-seizure meds were increased last night. Another eeg was done today but the last one didn't show any seizure activity, so we shall see...
Will update if there are changes tonite otherwise I will post again tomorrow. Love and prayers to u all. CJSRJ

Wednesday, November 16 10am

Long, Long night last night. Chris had a seizure while in recovery and was unable to answer the orientation questions. After moving into ICU we kept the questions coming every hour or so. Some he answered correctly, some he answered wrong (or maybe the way he would like it to be - says he is either 23 or 27) Anyway, some orientation questions he can get while others he cant. Neurosurgeon says it isn"t beyond the realm of possibility that the procedure and drugs have.
Plan to move him to med/surg floor today and home tomorrow. Janet is a bit on the loopy side from ho sleep, so Arlo went to keep watch over Chris while Janet tries to get through this blog and go to bed. I'll head back to the hospital around 3 so dad can get to his dental appointment. Feeling God's arms wrapped tightly around us,thanks again everyone for your prayers, thoughts love and support. We do love you all.

Tuesday November 15 8pm. Finally Chris is being moved to a bed in icu. He has been in recovery all this time. He is finally resting after being somewhat restless since coming out of surgery. He has pulled his dressing off and keeps pulling off the stickies for the Ekg leads. I hope he can rest well tonight. Thank you for all the prayers and messages sent our way today (as well as all of the other days). One of the details out of the way now and its time to wait again. About 3 to 5 days now for the Biopsy results. More tomorrow. Love you all. CJSRJ

Tuesday Nov 15. 11:30a. Surgeon just came out and said he was able to get 6 pieces of tissue for Biopsy and the pathologist Thot it was a good sample. He said there was not high cellularity in the tissue which would indicate a high grade glioma but does have some abnormal cells. A lot of swelling so he will be on highdose of steroids for a bit. Fairly positive report but certainly not out of the woods yet. Said he is coming out of anesthesia well, responding to commands well. Keep praying and ill update you all soon. Thank you all for your love and support.

Tuesday, Nov 15. It's 815 and Chris is in the o.r. was confused before he went in. Had a seizure when he tried walking to the bathroom. Praying that God guides the surgeons hands and everything comes out ok.

Monday, November 14

The waiting game continues.  biopsy is tomorrow morning.  Please keep those prayers coming!  Will post tomorrow's status sometime tomorrow after the biopsy.  Mom and Janet will take Chris to the hospital at morning at 5.  Keep those prayers coming and thanks for all the prayers you've been doing already    eWe love you.

Friday, November 11.  Visit with Neurosurgeon this morning.  In order to have the neuropathologist onsite at the time of the biopsy and to have Chris first on the surgery schedule he has moved the procedure to Tuesday the 15th.  He said the answer to what is going on is in the tissue so we need to wait to hear what the findings from them is.  The waiting is so hard - not knowing what is happening and what the treatment should be.  We continue to have people adding us to their prayers and prayer lists and we love all you for that because truly the answer is only known by God and we must place our trust in him, asking continually for his mercy and grace.  God Bless you all.  Love, CJSRJ

Thursday, November 10.  Well, things aren't going great, but not sure what to attribute it to.  Chris is having a fair number of seizures during the day now and wakes up having seizures.  He is still very tired and sleeps quite a bit.  Janet's parents arrived yesterday...what a blessing.  It is a little easier leaving Chris to go to work now that someone is here to keep watch over him.  Tomorrow we go to the neurosurgeon for the "pre-op" visit so we will ask him what the likely reason for the increase in seizures is.  Chris had a nice visit from Lisa (from his office) today.  She brought goodies, a picture of the staff in the office and cards with good wishes.  Will let you all know what time the biopsy is scheduled for.  Will give an update after the visit in the morning.  Please continue to keep us in your prayers, we will keep you in ours, we cherish each of the notes you send.  Love, Chris, Janet, Sam, Ryan and Jonathan.

Tuesday, November 8.  Chris feels pretty tired most of the time.  Not sure if it's the medication or the swelling or both.  Seems to be having more headaches the last few days.  Went for a haircut today.  The wonderful Ambriz family made some awesome dinner and brought it over for us.  DELICIOUS!  Thank you so much Dan for the terrific chicken, Pete the delivery boy and Mary the coordinator.  I'm sure Becky and Matt did something too cuz that's the kind of family they are!!  We love you.  Also got started today with the "Best Doctors" program that Janet's sister, Colleen, arranged for us.  They will gather all the records, pathology, imaging, etc. and provide a 2nd opinion with one of the best doctors in the U.S.  Awesome program and even more awesome sister.  Love you sissy.  Wish Monday would get here so we can get moving on whatever this is.  Thanks everyone for everything.

Monday, November 7.  Pretty quiet day today.  Neurosurgeon called me back early this morning to let me know that Chris can add one more of the seizure meds in the morning and at night and he can continue taking the decadron at the current dose rather than tapering off.  Janet went to work today but Sam and/or Ryan were home in case anything happened.  Diane stopped by this morning to make sure everything was ok and Roger sent along Bonanza and The Big Valley dvds for Chris to watch and help pass the time.  I think only true Bonanza lovers would think to send those along and then be happy when they saw the stack!  LOL  We have received so many kind words, offers of help and of course prayer for which we are so incredibly grateful.  Thank you all.  Much love, Chris, Janet, Sam, Ryan and Jonathan

A little history

For about 2 months, Chris has been experiencing some lightheadedness, head congestion, decreased hearing and occasional headaches.  Primary Care took a look and treated him for the congestion and thought it looked like a eustachian tube dysfunction.  Blood pressure was a little elevated so an additional bp med was added to his current regimen.  After taking the first dose of the new bp med, and while at work, Chris experienced his first episode of what we now believe are seizures.  Janet picked him up from work and brought him home, he had some dizziness at home over the weekend but nothing significant.  The following Monday, October 10 he got up from his desk and had another episode of dizziness resulting in a brief loss of consciousness and loss of bladder control.  Janet picked him up and we went to Urgent Care.  The doctor checked neuro status, did some lab work, and EKG and looked at his ears.  Ears were still "not right" but resolving, everything else was normal.  Had him stop the new bp med and said to follow up with primary care in a week.  Janet left the next day for San Francisco, Chris finished out the week with no further incidents.  Janet returned home on Friday and the weekend was uneventful.  However, the head congestion remained and Chris mentioned headaches a time or two which seemed to resolve with Tylenol.  Remember, Chris has had pretty severe allergies all of his life and the Santa Ana winds have come back to the area which tends to exacerbate the problem.  We chalked most of this up to the ear problem and the allergies.

Sunday, October 16, Chris turned 53 and we spent a fairly quiet day celebrating his birthday.  On Monday the 17th, Chris was at work, got up to use the restroom, experienced the dizziness again and had another incident of bladder incontinence.  Janet drove out to pick him up again and rescheduled his primary care follow up appt from Thursday to Tuesday morning.  PCP still felt like the problem was ears and probably cardiac as blood pressure has been slightly elevated throughout this period of time.  However, he made a referral to Neurology and ordered a cardiac stress test.  Told him to continue to use the Flonase for his head congestion as well as an antihistamine.  Neurology appointment and stress test were scheduled for the following Wednesday.

The rest of the week was, again, uneventful.  Chris and Janet went to a play on Saturday and helped celebrate the 50th birthday of our dear friend Melissa on Sunday.  Tuesday morning October 25, Chris is at work and experiences another bout of dizziness.  He goes home from work and we are happy that the Neurology appt is scheduled for the following day.

Neurology appointment does not point to any neurologic problems.  The neuro status exam, questions of orientation and past medical history, etc. are all normal and appropriate.  The Neurologist feels the symptoms Chris has and the incidents of dizziness, congestion, etc. are not likely to be seizures and probably is related to a cardiac problem.  However, he ordered a CT of the head, an EEG, a carotid ultrasound and a sleep study.  Later that day the cardiac stress test was completed and since the Cardiologist wasn't called into the room and Chris didn't pass out while on the treadmill, we assumed it was fairly normal.  Chris went back to work on Thursday, had no problems that day and finished out the week and through the weekend with no problems and said he actually felt like maybe his head was clearing up and he was starting to feel better.

Monday morning, October 31 at 10am Janet called Chris to check on him and see if he had any dizziness, etc. since it all seems to happen just at work.  He said he was fine, had had a tiny bit of dizziness early in the morning but nothing else.  At 10:15, Chris called Janet back and said he had just had another episode of dizziness while sitting at his desk and had awareness that his arms were moving but did not feel like he was in control of what he was doing.  Felt confused and wanted to know if Janet would e-mail the neurologist, let him know what was happening; that the first available CT scan was November 18 and is there something else he could/should do.  Janet sent the email.  A couple minutes later, Lisa, another co-worker, called Janet to say that Chris was not right and he needed to be seen today, preferably in the emergency department.  The ambulance was called to transport Chris from the office to the ER.  Janet drove out from her office to meet him in the ER.  Chris had not yet arrived in the ER when Janet got there, so she drove up to his office to pick him up and bring him in.  After Janet arrived in the psychiatry department to pick up Chris, he experienced another of the episodes he had been having earlier that day.  He became very unfocused, unable to talk, unable to coordinate his movements and just looked glazed, flat and gone to another place.   When he tried to talk, his speech was slurred and the words didn't make sense.  The EMTs arrived and asked the orientation questions which he was not able to answer correctly this time, however, a few minutes later he was completely oriented and his answers were appropriate.  Chris was taken to the ER at Kaiser, Fontana.

The ER doctor ordered several tests including the CT scan.  We were told the results were inconclusive and Chris needed a MRI of the brain.  Chris is VERY claustrophobic so they gave him Ativan, attempted the MRI and failed, gave him another dose of Ativan, tried again but still no luck.  Back in the ER and the physician said she would speak to Neurology about what to do since they were not able to complete the MRI.  Earlier in the day there had been discussion that the MRI was necessary no matter what it took to get it done.  After talking with the Neurologist, the ER physician said they would try a CT scan with contrast since Chris was able to tolerate that procedure earlier in the day.  The CT with contrast was done and the Neurosurgery chief resident physician told us that there was swelling in the brain, that they look for asymmetry of the right hemisphere and the left hemisphere, but you could see that was not the case.  The ventricles in the right hemisphere were much smaller than those on the left and the CT showed a light white area mostly on the right but pushing into the left hemisphere as well.  At this point it was after midnight, Chris had been admitted to the Adult Observation Unit and the Neurosurgery resident said while they needed to get the MRI, it didn't need to be done that night and they would work on getting it together during the day on Tuesday.

Tuesday, November 1 and more waiting for when and how the MRI was going to be accomplished.  EEG that had been ordered in the clinic last week was done. The decision was made to use Versed and Demerol for sedation for the MRI and Chris went off to have it done.  Apparently it was difficult, but they did barely manage to get the MRI done.  The neurosurgery resident on call that day came by and showed us the MRI.  There was swelling in the brain but there was also a small 0.7 millimeter lesion in the right frontal lobe.  She said it was treatable, Chris asked if he would be able to go back to work and she said yes.  She said the neurosurgeon on the case would be by in the morning and would go over the MRI then tell us what the plan was from there.

Wednesday, November 2.  The neurosurgeon assigned to the case stopped by to see Chris.  It turns out that he is one of the surgeons that Chris worked with a couple of months ago on an awake craniotomy case who Chris really liked a lot and feels very comfortable with.  The doctor told us that he feels the lesion is a low grade glioma in the right frontal lobe.  He will do a stereotactic needle biopsy then refer Chris to a neuro oncologist in the Los Angeles Kaiser facility for treatment; but, he said he needed to get another MRI without contrast to use while performing the biopsy.  He said he would make arrangements for the MRI to be done under anesthesia...more waiting.  Meanwhile, the Neurologist came in and wanted to go over his interpretation of the MRI...bad news...he thinks that even though the contrast did not really enhance the areas of the brain other than the specific lesion, Chris has got an invasive, aggressive tumor throughout his brain.  He emphasized that this was his opinion and that he is not a neurosurgeon or a neuroradiologist and that he feels bad about bringing us this bad news.  A little bit later the MRI department was ready for Chris so he was taken down for the study.  3 hours and 3 studies later, Chris arrived back in his room.  The anesthesiologist said he did well except when his blood pressure started to bottom out and that they had to have two people to keep the mask on him (or something like that).  A little while later the neurosurgeon came back in to discuss the MRI and the plan.  Initially the Neurosurgeon had said that he would do the biopsy the next day (Thursday), however someone started asking questions about at home prescriptions and otc medications.  It was determined that since Chris has been taking baby aspirin every day for the last 5 years he was too high a risk to have the needle biopsy done.  The Neurosurgeon said he didn't want to take the risk since if the needle caused something to start bleeding, they wouldn't find out til later and by that time it would cause a bigger problem than what we need to deal with.  So, the biopsy was moved to November 14.  Janet asked the neurosurgeon about the discrepancy between neurosurgery and neurology.  The neurosurgeon said that yes there is a large area of lighter color throughout the brain, but it did not take up the contrast as a tumor normally will do and they won't know what anything is until the biopsy is done and the pathologist reads it.  He said they would make sure Chris is stable and get him discharged by Friday or Saturday.  Knowing that Chris was in good hands in the ICU and the plan was to move him to a medicine floor the next day, Janet went home to sleep.

Thursday, November 3.  Janet is gathering up some things to take to the hospital and Chris calls.  The neurologist had come back in to see him and unfortunately he came in when no one else was there.  The neurologist wanted to apologize for bringing such bad news but felt he had to tell Chris what the story was.  The neurologist said that based on the MRI and CT scans that were done, he felt that we are dealing with an aggressive, invasive, untreatable cancer that has spread fairly extensively through the brain including the brain stem.  Chris asked what all of this means and was told that with this kind of cancer, he would have 1 to 3 years to live.  Chris asked about going back to work and Neurologist said if it were him he would focus on making preparations to have his family taken care of and just spending time with family.  This was really shocking news in that it is not consistent with the Neurosurgeon's or the Neuroradiologist's opinions and the symptoms he has been having do not indicate that there is a problem throughout the brain, especially involving the brain stem.  Janet got back to the hospital and a few minutes later the Neurosurgeon came in to just review again the plan of care.  We asked him about the discrepancy in opinions and how the Neurologist has given his very grim, terminal opinion.  The Neurosurgeon stood firm in his belief that this is low grade glioma, very treatable and no matter what, there is absolutely no way to tell until the biopsy is done and the pathologist provides his findings.  At this point any thoughts about what it is or isn't remains basically an educated guess.  In the meantime, Chris needs to go home and relax until the day of the biopsy and then when the results are in, the treatment plan will be determined which may or may not include chemotherapy and radiation.  He has been placed on Decadron to decrease the swelling in the brain and Keppra to control seizures.  We spent the rest of the afternoon getting ready to go home.  Thursday afternoon we left the hospital and will return on Monday, November 14 for the biopsy.

Friday, November 4 was uneventful other than the numerous phone calls and text messages checking on Chris and learning that he was home from the hospital.  Friday afternoon Judi Thompson brought Chris lunch and visited for awhile, in the evening Allan and Melissa Steward came over for a bit as well.  Chris was clearly tired though by the end of the evening.

Saturday, November 5 was pretty quiet as far as phone calls, etc.  Saturday afternoon, Chris and Janet went to see Riverdance at the California Theater in San Bernardino.  Janet had given the tickets to Chris for his birthday a few week earlier.  We enjoyed the show but the activity certainly took its toll on Chris.  As we were leaving to go back to the car, Chris appears to have had another seizure that affected his walking.  He had a little trouble getting down the stairs, he said his heel kept catching on the steps.  Janet has her own difficulties with stairs because of ongoing knee issues caused by the tibial plateau fracture earlier this year so she wasn't paying really close attention to Chris coming down.  Once we hit the ground floor though, Chris held onto Janet and as we walked out, Janet could tell there was definitely a problem.  Chris wanted to sit down so he sat on the curb for a few minutes then Janet went to get the car.  By the time she was back with the car, Chris seemed to be back to his regular self.  We spent the rest of the evening at home without further incident.

Today is Sunday, November 6.  Chris has done some laundry today and emptied the dishwasher.  He is sleeping off and on and complained of waking up with a headache today.   He hates sitting around with nothing to do.  We have gotten so many phone calls, text messages and emails expressing great concern, love and support from so many friends and family members.  Forgive us if we don't respond to you all personally; the sheer numbers are overwhelming!  Please know that we have received every one of them though and we feel just so loved and cared about.  God has blessed us in so many ways and we know that he is in control.  Thank you for the thoughts and prayers you are all sending.  We appreciate each and every one of you.   We also want you all to know that if we need anything we will definitely take you up on your offers to do what needs to be done.

Janet and the boys are doing ok too.  We are just blessed to have each other and lean on each other for support.  Sam, Ryan and Jonathan love their dad very much and are very concerned about him but they are going about their normal lives and we have all decided that until there is something to worry about, we won't worry.  Colleen suggested today that we not borrow any trouble, so we won't do that!

Janet goes back to work tomorrow and Janet's parents will be coming down to stay and help out.  They will arrive probably sometime on Wednesday.  You see...we are so very blessed!

We love you all.