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.