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