Clay spent the night with Dad last night.  He said that he quit counting the number of times he got up with Dad after the tenth time.  He told Mom that he was so tired when he got up this morning that he could hardly move.  Even Dad said that he himself had not slept well.  He said that every time he got up to go to the bathroom, he would look over and Clay was sitting up waiting for him!  Mom is back on duty tonight.

Dad is still very confused.  Last night, Mom told him that "We need to take a shower."  He answered her "WE do not need to take a shower.  WE have already had THREE showers today.  The only person who needs to take one is YOU!"  He really had not had a shower yesterday, but Mom didn't push the issue.  He also asked if he and Mom were back in their own home.  He reminded her that it was time for his breakfast (after he had already eaten breakfast).  He reminded her that it was time for lunch (after he had already eaten lunch).   She asked him if he knew where he was, and he responded, "I don't know why everyone keeps asking me where I am.  If THEY don't know, how do they expect ME to know?"  Dad also slept a lot today.  I'm sure he is tired from his own lack of sleep at night.

Yesterday, after Mom told me how much Dad has been eating, I told her that it could be the steroids Dad was on.  She told me that he wasn't on steroids anymore.  I questioned that; usually when you are on steroids for an extended period of time, you don't quit taking them abruptly.  I told her to check her discharge medication sheet from the hospital, and she said there were no steroids listed.  He has not had any steroids since last Friday when he was discharged.  The steroids were being used to decrease the swelling in his brain, which in turn decreases the confusion.  I told Mom that she needed to contact Dad's doctor and make sure his steroids were supposed to be discontinued.  Well, it turns out that Dad was supposed to stay on the steroids.  It was left off his list of medicines that are to be continued at home.  I think that this has probably added to his confusion, and possibly made him more tired.  They also did not tell Dad to check his blood sugar at home.  He was checking it four times a day in the hospital, and every time I was in the room with him, they had to give him insulin because his glucose levels were way too high.  If they were high then, it stands to reason they would be high now.  If his glucose is too high, it can cause increased urination, both during the day and at night.  It can cause dizziness and confusion too.  Mom is going to ask the doctor tomorrow about checking his glucose.  I hope the doctors don't get tired of us asking questions, but if I hadn't questioned his lack of the steroid, he wouldn't have taken it until he went back in the hospital again on Monday.  That's the pharmacist in me coming out - I knew someday all that education would pay off!  That steroid is very important to Dad's therapy.
   
I am baking two loaves of pumpkin bread as I type this to take to Dad's primary doctors tomorrow.  I want them to know how much we appreciate all the time they have invested in Dad.  Dad's hematology oncologist and neurological oncologist are both wonderful.  I haven't met the two doctors who actually discharged Dad yet.  Hopefully I will get to meet them next week.  

Tomorrow Dad goes to receive his $3000 shot of Neulasta.  It's used to decrease the risk of infection for patients receiving high doses of chemotherapy that can reduce your numbers of white blood cells.  He will be given that shot after every cycle of chemotherapy.  That's $15,000 for 5 shots!  I am going to Vanderbilt in the morning to meet them at the Vanderbilt Clinic for their appointment.  Mom will be driving there from Kay's house.  I believe this will be the first time Mom has driven to Vanderbilt.  Someone else has always been the driver.  Kay will be going with them to be the navigator!  Should be interesting :)

I hope all is well with each of your families.  Have a very blessed day.
Love,
Renee

MOM IS GOING TO GET SOME SLEEP TONIGHT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My dear brother is spending the night, and he will sleep with Dad tonight.  Thank you very much, little brother.  Tomorrow will definitely be a better day for Mom.  Everything is a little easier to deal with when you have rested.  I truthfully don't know how she's made it this long. If I were in her shoes, someone would have kicked me out of their hospital room two weeks ago.  Come to think of it, Mom DID insist that Kristie and I get some sleep in a hotel room one night during the first week Dad was in the hospital.   I didn't last three nights without sleep.

Mom didn't think Dad was as confused today as yesterday.  He has slept a lot.  He didn't want to talk to me the first time I called today.  I did get to talk to him tonight, though.  I asked him if he had a headache, and he told me that he did.  I asked him how much it hurt, and he said "On a scale of 99, I'd say it was 100."   I asked him if he had told Mom that his head hurt so badly, and he said, "Well, it's not bad."  He is also getting tired of hearing Mom say "We."  I asked him to explain, and he said that all she says is "We need to do this, we need to do that.  I am getting tired of 'We'.  I'm getting ready to go outside and draw a line in the street and invite 'We' out."  I asked Dad if Mom had kept him busy today, and he said he hadn't done anything, but she keeps saying "We."  I'm not sure where he was going with that one, but I'm glad I'M not "We."

I am listening to a song right now by Casting Crowns that truly puts into words exactly how I have been feeling for weeks.  It is called "Praise You In This Storm".  In case you have not been fortunate enough to hear it, I am going to give you the lyrics.  I hope it will touch your heart as much as it has mine.

PRAISE YOU IN THIS STORM

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

But as the thunder rolls
I barely hear Your whisper through the rain
"I'm with you."
And as your mercy falls
I raise my hands and praise the God who gives
And takes away.

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And through my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find you

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you."
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The maker of Heaven and Earth

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
And though my heart is torn
I will praise You in this storm

I will be the first to say this is not always easy, but I am trying to remember always who is in control.  "And though my heart is torn, I will praise You in this storm."  Thank you Lord for the constant whispering in my ear, even when when the rain is pouring.  I am never alone, and neither are Dad and Mom.  "I will praise You in this storm."

Love,
Renee

Mom is having a very difficult time transitioning from the hospital to Kay's house.  She is also just SO TIRED that everything is magnified 10 times.  The thought of them being a burden on Kay and her family is almost more than Mama can bear.  I reminded her that Dad's parents lived with us for years.  We only had three bedrooms, and housed two grandparents, two parents, three girls and one boy, and we never felt burdened.  Kay and Gregory have three spare beds; there are more than enough places for everyone to sleep.  Mom says she knows that Kay and Gregory really want them to be there, but she still just cried and cried tonight.  I think that one of her biggest problems is that she hasn't had a good night's sleep in three weeks.  In the past few days, Dad has been getting up 10 to 15 times a night to go to the bathroom, and he goes right back to sleep.  Mom wakes up and it takes her a long time to go back to sleep again.  So far Mom has refused all offers of letting Kay or me sleep in Dad's room so that she can get some rest.  Having no sleep certainly changes your perspective on your circumstances.  Right now, I think she is just overwhelmed.

Mom said that Dad was very disoriented today.  His confusion seemed to take a step backward.  He thinks that he's at Barnes Hospital in St. Louis, where he used to go and see his eye doctor.  Today, Mom told him to follow her to the bedroom so they could take a nap, and when she got to the bedroom, he wasn't behind her.  She looked in the bathroom and couldn't find him, so she retraced her steps.  Dad had gone into the kitchen, thought he was in the bedroom, and stripped off all his clothes.  He had no idea he was in the wrong room.  They did get to take a walk today, and when Dad got tired, Mom pushed him in a wheelchair for a little while.  Daddy is really being patient and easy to get along with; Mom said he's trying really hard, but I think she is just really disheartened that there has been so little real progress in Dad's mental state.  I reminded her that the doctors said it could take a month for any changes to occur, and she knows that........but she desperately needs to see some semblance of the husband she had just a short time ago.  We all are aware of the possibility that Dad will never come back to us as he once was, but I think for Mom to see Dad move backward is devastating to her, especially in her sleep deprived state.  Mom was given some literature on having home health aides coming in and sitting with Dad.  Kay is going to push that issue with her tomorrow.  Mom is insisting on doing almost everything herself, but she doesn't realize it will be at the price of her own health.

I am really frustrated tonight.  Mom has always been such a help to everyone; family, church members, friends and complete strangers.  She could be the "poster child" for these two verses:  LOVE THE LORD YOUR GOD WITH ALL YOUR HEART AND WITH ALL YOUR SOUL AND WITH ALL YOUR MIND AND WITH ALL YOUR STRENGTH.  THE SECOND IS THIS:  LOVE YOUR NEIGHBOR AS YOURSELF.  THERE IS NO COMMANDMENT GREATER THAN THESE (Mark 12: 30-31).  She just really has trouble letting anyone help HER.  She has never HAD to let anyone help her.  If I said, "Could everyone who has had a loaf of bread given to them by Jeanette please stand up", there would be a thunderous sound in the air as hundreds of people pushed back their chairs.  Most of you are smiling right now because you've been the beneficiary of a loaf of sourdough bread yourself!  She has taken care of us all!

Please pray for Mom to get some much needed rest tonight.  She is in dire need of sleep.  Also pray for Mom to be able to accept help.  This is going to have to be a group effort, and the sooner she realizes it, the better.

Thank you again for all your prayers.
Love,
Renee

Dad has left the building!!!  He was released this afternoon.  After another long talk with their doctor, I think they finally understand that there will be no going home to Philpot (unless it's a day trip) for the next ten weeks.  That was a very difficult decision for Mom to accept.  She realizes that it will be almost Christmas before they get to come home.  The past month has gone by in a blur.  I think the weeks where Dad has chemo (weeks 1,3,5,7 and 9) will pass quickly.  The weeks where they have nothing happening may be a totally different story.  The chemo schedule is not set in stone.  Dad will have labs run every other week to make sure his levels are where they need to be.  If they aren't right, there will be no chemo.  They will wait another week, and check the levels again.  Hopefully everything will progress exactly the way the doctors want it to.

Dad looks much better.  He seems to understand a little more of what's going on around him, but he spends a lot of his time with a blank look on his face.  He is talking more, but still has many bouts throughout the day of confusion.  His strength is coming back.  This afternoon,  Aunt Linda and Uncle Larry drove Mom and Dad to Kay's house.  Dad had his car door open before anyone else, and he got out of the car quickly.  They were still getting out of the car, when they looked up and Dad had run into the garage and had started up the garage steps.  He hit the first step and fell.  Mom thinks he just didn't get a good grip on the hand rail.  At any rate, he landed on his behind.  He hurt his hand, but they don't think he hit his head.  It really shook them all up.  It was a rude awakening to the perils of Dad living outside the safety of a hospital room.  They will all have their work cut out for them, trying to keep Dad from accidentally hurting himself.  He just doesn't realize that life has changed and he can't do everything he used to do.  Mom says he doesn't seem to understand the word "no".  When she tells him  "stop" or "don't", he doesn't listen to her.  If he's going to pull out all his IV's because his foot is tangled in the line, he won't stop trying to get out of the bed so she can untangle him.  I don't think he's intentionally trying to ignore her; I think it's more an issue of her words not registering with him.  Today, he was incredibly blessed not to have hurt himself.  I think that through this entire ordeal, God has surrounded Dad with his angels.  Mom has always been Dad's angel.  Gregory would have to be another one.  Those are two of the angels we can physically see.  I believe we are also surrounded by angels that we can't see.  Dad was so very lucky to fall going up the stairs and not to fall on his head or on his stomach - which could have burst his aneurism.

FOR HE WILL COMMAND HIS ANGELS CONCERNING YOU TO GUARD YOU IN ALL YOUR WAYS; THEY WILL LIFT YOU UP IN THEIR HANDS, SO THAT YOU WILL NOT STRIKE YOUR FOOT AGAINST A STONE.
Psalm 91: 11-12

BECAUSE HE LOVES ME, SAYS THE LORD, I WILL RESCUE HIM; I WILL PROTECT HIM, FOR HE ACKNOWLEDGES MY NAME.  HE WILL CALL UPON ME, AND I WILL ANSWER HIM; I WILL BE WITH HIM IN TROUBLE, I WILL DELIVER HIM AND HONOR HIM.
Psalm 91:14-15

These are God's promises to us.  He shelters us in His arms.  He will sustain us.  He guards us with His angels.  I am so very thankful that God is ALWAYS true to His Word.  There are no broken promises, no "I made a mistake" or "I forgot you needed Me tonight".  He is the one true constant in this crazy world, and I know that I am forever His child.  How blessed am I?

Much love,
Renee

I think Dad is getting tired of hospital food.  When I got to the hospital this morning, he wanted me to find out what Shoney's was having tonight for supper on their buffet.  He said they called it the Sunday Supper.  I got on my computer and gave him a fabricated list of his favorite and not-so-favorite foods!  He told me we'd go to dinner there tonight.  Ten minutes later, he asked Mom to check and see what they were serving at Texas Roadhouse.  He is served diabetic meals, and he gobbles most of his food down quickly.  I think he is hungrier than usual due to the steroids.  The steroids are also being blamed for causing him nervousness (definitely another side effect), and making it difficult for him to nap.  He is getting more emotional, and tears up when he talks about his children.  That can also be attributed to the steroids.  He will be on a high dose for a long time, so I hope some of those problems taper off soon.

He looks better every day.  He is still quiet, but I got a few laughs out of him.  Today while Mom was gone (only a half hour, supposedly because her watch quit and she didn't want to be gone too long), I decided that I would let Dad dictate some emails and send them out.  We sent out one to Kristie and Clay - I knew they would be amazed that Dad agreed to participate in such a 21st century technology-based activity!  That is generally not a subject to be broached with him!  Kevin loves to tease Dad, and bought him a XL T-shirt that says, "No, I will not fix your computer".  That didn't fit, so the next year Kevin bought him the same shirt in a 3XL!  Dad wears it proudly, a badge of what he does NOT stand for!  

Dad squeezes into his twin size hospital bed with very little room to spare.   This does not stop me from climbing on his bed, laying down beside him, wrapping my arms around him and hanging on for dear life so I don't roll off the bed.  It's worth it, because, for just a few minutes, everything is right in my world.  Dad seems happier too.  Before we knew he had an aneurism in his stomach, I would find Dad in his recliner and then I would climb in his lap.  Usually Kristie would join us, and we'd stay there until Dad's knees would become numb.  We'd climb off after one of his rather crass comments about our upwardly spiraling weight, but that didn't slow us down the next time we were at home.  It doesn't matter how much Kristie and I weigh - Dad's lap has ALWAYS fit.

We are hoping he might go home to Kay's house tomorrow.  Mom has talked to all the doctors and nurses, hoping that SOMEONE would say it was okay for her to bring Dad home every other week.  So far, they all think it's too risky to be so far away from Vanderbilt.  It is tough to see the disappointment in Mom's eyes, but I know she will do what's best for Dad's health.  There will be no chemo next week, so he'll have lots of time to rest up before the next round begins.  Week one is almost finished.   Nine more weeks to go.........

Love,

Renee

Dad had one of his best friends visit today:  David Fisher.  Mom said that the day brought  laughter, and Dad was glad David was there.  I wish I had been there to hear them.  David always keeps Dad on his toes, and today was no exception.  Both of them absolutely love to eat, and it's not necessarily the quality of the food that will bring them back to a restaurant; sometimes it's the quantity!  They can both consume copious amounts of food.  David read Dad the Messenger-Inquirer today, and they went over the Rural King ad.  David managed to find a "hog pan" or a "hog trough".  They decided they needed to buy one of those, take it to one of their favorite restaurants, and see which one of them could fill it up with the most food!  I guess you had to be there, but........I am so glad that Dad enjoyed his day.

I think Dad is feeling better.  He tends to remain quiet most of the time, but he has his moments of humor.  His nurse, Ruth/Louise has described it most aptly as DRY humor.  She has been his nurse for three days, and he still calls her by the wrong name.  I don't know why he calls her Ruth, but Louise still manages to keep a smile on her face, regardless of the circumstances she finds in room 11016!  I think Dad looks better.  I don't know if the chemo is already working or the steroid has kicked into overdrive, but his color is better, and we are getting some smiles.  Ruth/Louise told him tonight that he had a sweet smile!  His hair is already starting to grow back - soon he will look like he's had a buzz cut!  He is eating everything on his plate - though he says that's not saying much!  I think there have been definite improvements in his demeanor over the past few days.  I give 100% of the credit to God.

Psalm 118:28-29 says, YOU ARE MY GOD, AND I WILL GIVE YOU THANKS; YOU ARE MY GOD, AND I WILL EXALT YOU.  GIVE THANKS TO THE LORD, FOR HE IS GOOD; HIS LOVE ENDURES FOREVER.

Our circumstances change, but God's love NEVER DOES!  We may find ourselves in the direst of circumstances, but He promises us that He will give us the strength to endure whatever we face.  I am holding Him to that promise, every single day.  I can make it through a lot of the day without crying, though every day brings its moments when you are overwhelmed with sadness.  My sister credits  this newfound strength on the Xanax prescription I have had filled!  I have made it through 48 years, and have never taken any anxi-anxiety medicine until now.  I do not give any of the credit to the Xanax; I have only taken a few of them.  All the credit goes to the answered prayers from each of you.  God is hearing every one of them, and He is ever gracious.  We have a long way to go, and I know the hardest part is still to come, but we are making it through, one day at a time.  Thank you for your love and support.  You don't realize how much prayer and friendship mean until you have your back against the wall.  All the hugs, prayers, meals, cards, emails and visits have meant more than you will ever know.  We have been humbled by all the love our friends and family have shown.  I don't know why we wait until something really awful happens before we take the time to show how much we mean to each other.  We really should show that love every day.  Life is short.  Make it count.  Make a difference in someone's life, and you'll change YOUR world too!

I am heading to Vanderbilt early in the morning, and I will be there all day.  I'll give you the "Freeman updates" tomorrow night!

Love,
Renee

Well, Dad will probably be in the hospital until Saturday.  They are still giving him medicine to decrease the levels of the Methotrexate in his body.  Methotrexate is the primary drug used in his chemotherapy.  The levels of this drug can't stay high in the body for very long, so  Leucovorin is used to basically take the levels back down and decrease the damage done to the healthy cells.

Dad has already wreaked havoc in his room today.  The nurse told him when he went into his bathroom this morning, he should not pull the cord next to the toilet because there were shift changes going on and all the nurses would come running.  Dad misunderstood this concept; he thought that pulling the cord would bring him some relief.  It actually brought all the nurses running into his bathroom while he was still in there - but no relief!  Mom was laughing this morning about all the excitement.  It should be another interesting day!

It's time for me to go to work.  I hope your day is a great one.
Love,
Renee

It's 9:30, and I am officially home from Vanderbilt.  He is still getting chemo tonight.  Mom said he was receiving chemo last night until 2AM.  He still had one more bag to go tonight, and it will last for 6 hours.  He has yet to experience any side effects, though I have a feeling  that won't last.  He is receiving four different chemo drugs, one monoclonal antibody and a steroid.  The nurse told Mom tonight that she doubts if Dad will be discharged from the hospital before Saturday.  If that is the case, there may be a mutiny before the weekend!  Tonight, Dad told Mom that he had better get out his CD player, allow her to burst out in song and calm down, or else she'd have him in the psycho ward!  The nurse Louise (whom he called  by a completely different name) took that opportune moment to exit quickly and gracefully.   He redeemed himself by giving us a little smile.   We all get really excited when Dad smiles.

Mom DID LEAVE HIS ROOM, but only for an hour.  She was afraid she would get lost.  I told her she would have had plenty of time to find her way back, but she is a stubborn woman.  You all know that my father is a very stubborn man.  It is therefore no surprise that all of his children are.........well, a little stubborn too!!!!!!  I'm sure there are three husbands and one wife shaking their heads in total agreement.

Dad is still receiving a pain medicine, and that made him a much more agreeable companion today.  Mom says she doesn't think she could take another day like yesterday.  Apparently Dad's demeanor reached the nurses station, because this morning one of the nurses told Mom she had heard she hadn't had a good day yesterday, and then gave Mom a big hug!  I hope the nurse has plenty more where that came from!

While I was staying with Dad (and Mom wasn't in the room), Dad looked at me and said "I have Central Nervous System Lymphoma".  I told him that he was right, and he asked me if it was in his lymph nodes.  We discussed this for several minutes.  That may not seem like an insightful statement to you, but it is the very first time Dad has EVER acknowledged that he has cancer.  I don't want to get my hopes up that he may already be regaining brain function, but that was a pretty profound moment.  I know the Lord is working in my Dad's brain, and I can't wait to see the results.  Dad also mentioned worrying about something, and I asked him if he remembered Philippians 4:6-7, and with a little prompting on the first few words, the scriptures literally flew out of his mouth.

DO NOT BE ANXIOUS ABOUT ANYTHING, BUT IN EVERYTHING, THROUGH PRAYER AND PETITION, WITH THANKSGIVING, PRESENT YOUR REQUEST TO THE LORD, AND THE PEACE OF GOD WHICH TRANSCENDS ALL UNDERSTANDING, WILL DESCEND ON YOUR HEART AND MIND.

Thank you Lord for blessing us much more richly than we deserve.  I ask that you heal my father and help us to stand firm in our faith during his illness.  We also ask you Lord to fill us with the peace that is only available from You.  I am so very thankful to be able to put my Daddy in Your hands, Lord.  You truly are The Great Physician.
Amen

God bless your family.
Love,
Renee

Dad is much more subdued this morning.  They have added oxycodone to his IV for his pain, and he is very mellow.  He really isn't talking much at all.  I brought them a giant "snack bonanza" that two of my friends made up - about fifty pounds of snacks, water, books, cards and wonderful scriptures to keep our spirits up.  Dad has been munching on the trail mix (I am forced to eat all the M&Ms - strictly because his blood sugar is up)!!!!!  They were absolutely overwhelmed by their generosity (thanks again, Cheryl and Durinda).  I firmly believe that almost everything is improved by chocolate, and there are lots of candy bars in this bag!!!!  The nurse said that Dad could have one candy bar per day, and he has pronounced that Snickers are his favorite!

Dad will have another full evening of chemo.  He has been napping this morning.  I think I have convinced Mom that she CAN actually leave this room, if only for a short time!  She is a little concerned about getting lost, but I told her that she has time to wander around.  It's a beautiful day, and I hope she can at least enjoy a little of it.  The hospital environment is a little overwhelming, to say the least.  After a few days, it is almost as if the rest of the world ceases to exist.  What day of the week is it, what day of the month is it - they keep asking Dad those questions, but after a few days here, I don't know the answers to those questions either.

He seems to be feeling better today.   He's not napping anymore, and I am on an official "toothpick hunt".  He swears that if I will just open the cabinet next to the stove, I will find one.  I told him there was no stove in this room, so now I am looking for the pantry!!!!!  Should be an interesting afternoon!

Love,
Renee

Today has been a very long day for both parents. Chemo started at 2:15 this afternoon and will apparently continue until around midnight. We had originally been told it would last around four hours, but that is definitely not the case. Dad is sitting in a chair, hooked up to quite a few monitors. Mom says there have been nurses in and out for most of the day, watching all of Dad's vital signs and his urine pH (which Dad says checks for "sweetness")!  He cannot control his bladder because his tumor is pressing in an area of the brain that regulates that function. They finally catheterized him - and the pain from this has been really difficult for him to deal with. He ripped his catheter out right after his biopsy and apparently all has not healed. He is insisting to Mom that he must go to the bathroom. She tries to explain that he now has a catheter and things will take care of themselves, but they have been arguing about this nonstop all afternoon and evening. Dad has always been stubborn, and his arguing skills rival a five year old child right now.  If I didn't know better, I'd think he was trying to wear her down.  He thinks the pain is due to the fact that he has "to go" and is doing everything in his power to get around Mom and the catheter.  I think Mom is almost at her cracking point, and this is only day 1 of the chemo.  Dad finally told her to go sit in her chair and "be still". She had a good cry and then it began all over again. The nurse told Mom that she will not be able to handle this by herself. I will be there all day Tuesday, Thursday and Friday.  I hope Mom will leave his side for just a few hours to give herself a break. My whole family is going to have to pitch in so Mom can maintain some semblance of sanity.  I think Erma Bombeck would have had a field day describing the chaos going on in their room today.

I was talking to Dad a few minutes ago, and he told me that he would have to let me go - a neighbor girl (translated: nurse) had just come into his room.  Mom is hoping that Dad will be able to go to sleep soon, even though his chemo will continue for hours to come.  Unfortunately, they can't give Dad any medicine to calm him down because of his confusion. They have to be able to tell if his confusion is the same as usual or getting worse due to the chemo.

I don't know whose desperation sounded worse: Dad trying to convince Mom that he really MUST go to the bathroom, RIGHT NOW, or Mom trying to convince Dad that everything is taken care of. Try to imagine that conversation going for HOURS, and you will have summed up their day.

One last note: the nurses told Mom that it was very likely that Dad would be in the hospital all week. We originally were told he would be there until Wednesday or Thursday.  His vital signs aren't where they need to be, and they plan on making sure Dad has no problems - at all - before they release him. I am so very thankful for the exemplary care they have shown Dad.  He is definitely right where he needs to be.

I do believe that tomorrow Dad will get up and repeat all this chemo again.  Hopefully tomorrow will be a better day.

Love,

Renee

Dad is in radiology right now, getting his PICC line (a peripherally inserted central catheter). This is where the chemo will enter the body. Mom says they have not told her yet when the chemo will begin. It will be a very long day for both of them.

I wanted to give you an address where they will be staying - my sister's house - while they are in Nashville. Mom told me last night the nurse informed them that he could be in the hospital all week. I hope they will be able to come home to Philpot for at least for a few days during the next 10 weeks. Kay's address will be the best place to send any cards or letters. Here is my sister Kay's address:

Kay Barnes

172 Sontag

Franklin, TN 37064-5754

Mom said that Dad's blood pressure still isn't where they would like it to be this morning; it's 140/59. The lower number is still lower than the doctors would like. His blood sugar is running high (due in part to the loaf of pumpkin bread I sent with them to the hospital), so he was given insulin. Mom also said that one side of Dad's mouth is drooping again. His urine pH was 7.5 at 4AM this morning, and the nurses felt like it would hit 8 by the time his chemo was to be administered. He still doesn't know where he is or why he's there.

I know Dad is being lifted up in prayer all over the country, and the Lord will take good care of him. I will give you an update tonight.

May God bless you all today.

Love,

Renee

Dad is officially checked into Vanderbilt. I asked if he knew why he was there, and he said no, but that he figured he'd find out in a few days. He is hooked up to an IV with Sodium Bicarbonate (a fancy name for baking soda) to try and alkalinize his urine. If the pH doesn't hit 8 by morning, they can't give him the chemo. His blood pressure is not too great: 156/47 - way too high on the top, way too low on the bottom. I am so very scared of him being in the hospital and I am so very scared of him not being there. I have spent the whole evening with a knot in my stomach, thinking about my dad being completely unaware of why he's in the hospital, yet complacently waiting in a hospital bed for what's yet to come. His body is about to be filled with toxic chemicals, and he just doesn't know.

He has always been my rock, my example, my mentor and he has loved me unconditionally, and now he just doesn't know. It breaks my heart to see him like this, but I know the Lord is gracious. Dad is obviously cradled in God's arms, being carried through this extremely difficult time. He is not suffering. For that, we are truly blessed. Hopefully tomorrow will bring the beginning of the end of Dad's tumor. I am praying for a miracle. We are in sore need of one.

Thanks for all your love,

Renee

THEY CAME HOME!!!!! Kay decided to bring them home this afternoon so Mom could pack up a few things. Mom also wanted a haircut, but apparently it is homecoming weekend and all the salons were full.......except for Macy's! She told them she wanted a haircut that would last ten weeks, and then was surprised at how short it was! Kristie and Rich brought their new additions: not one but TWO miniature granddogs for Dad to see. Clay brought his new doberman puppy, so it was quite an interesting evening. Dad made the comment that "It's going to the dogs around here"!

Kay will have them back at the hospital by noon tomorrow, then the chemo starts Monday. Mom will get to stay in his room with him - she will have her own bed. She tried to lay down by him in his bed at Frazier, and told him to scoot over, but he only moved over one inch. He told her that maybe they could push their beds together! I think Mom gave up and went back to her side of the room.

Dad doesn't mention tumors, biopsies, hospitals or chemotherapy at all. He is going into the hospital with no knowledge of what his immediate or distant future holds. I am very thankful for this blessing, and I'm not sure how he'll react if and when he is able to understand how truly sick he is. I guess we will, as Dad always says, "Cross that bridge when we get to it".

I will keep you posted on Dad's progress. If you would like to have this blog emailed to you when it's posted, you can sign up as a "Follower" of Freeman Powell. It's located on the lefthand side of the page when you bring this website up. I believe you sign up for a Google account - you just put in your email and a password, and then it will be sent to you automatically. If you have a problem with getting this set up, email me at renee-rx@roadrunner.com and I can try to add you in.

I am thrilled that they got to come home tonight. Mom was packing as fast as she could. Dad just enjoyed sitting in his chair. As for me, it was wonderful just to sit back and watch Dad in his own environment. It was almost, for a few minutes, like time stood still. Mass confusion, grandchildren everywhere and everyone where they should be - at home. Tonight was another blessing for our family.

Praise God from whom all blessings flow..........

I hope tonight you are able to count your many blessings too. I have come to realize how much I took for granted. One hard lesson I have learned from this: you don't realize what you have until it's gone.

May God bless you and your family.

Love,

Renee

I apologize for the lateness of information, but I didn't get home from Vanderbilt until 10:00 tonight. It has been such an emotional day. Poor Daddy was wheeled from one test to the next all day long. I know the spinal tap hurt, but when they wheeled him out, he had already forgotten about it. The nurse told me that he had experienced some pain during the procedure, but the knowledge of it was all gone in just a few minutes.

His pet scan showed no tumors in his body besides the one in his brain. His eye exam showed no lymphoma in his eyes. He has been such a trooper for the past few days, never complaining, just going where we wheeled him. If you asked him how he was holding up, he'd say he was "fresh as a daisy", "super" or "I'm doing just fine".

We talked about the clinical trial today with Dr. Reddy, the hematology oncologist, and we all agreed that Dad can't begin to comprehend the situation. We did not have to make a decision at all regarding treatment. This truly was a blessing. The doctor told us that Dad's situation was very grave, and I know that if Dad took the experimental treatment and things didn't go well, then Mom would never forgive herself. So, we are going with the standard treatment for "primary central nervous system lymphoma" - otherwise known as pcns lymphoma. This is apparently the regimen used all across the country. He will check into the hospital on Sunday, have chemotherapy on Monday and Tuesday, and if his blood work checks out okay, he'll be discharged on Wednesday or Thursday. He will just take pills for the second week. Then he'll repeat this cycle for a total of 5 times. He is taking a high dose of methotrexate, which can shut down your kidneys. That's why he'll be hospitalized every other week. He will be monitored very closely. They will not do any of this treatment in Owensboro. They would prefer Mom and Dad to stay near Vanderbilt for the entire 10 weeks, but the doctor did say they could come home for a few days as long as someone was staying with them. It is very important to Mom that they get to come home soon. She hasn't been home since Dad had his surgery, which was 12 days ago. She won't be home for at least another week, either. I'm not sure how we are going to manage this. I would prefer they stay in Nashville, but I know how comforting sleeping in your own bed can be, or looking at your flowers. Right now, Mom is in great need of comfort.

The chemo does shrink tumors in most people, but the relapse rate for this type of cancer is very high. Most people have a relapse by 18 months.....but not ALL people. Some people live for years with this type cancer. It can't be cured, but sometimes those cells lie dormant for a long time before reappearing. Dad's cancer has progressed much faster than most people with this disease, and that's not going to be playing in our favor. However, WE STILL HAVE HOPE. WE STILL HAVE FAITH. WE STILL STAND ON GOD'S PROMISES. Our God is an awesome God, and HE'S the One who's writing the statistics books. We will take on this fight one day at a time. This battle can be won only on our knees.

Thank you for every single prayer you've offered for our family. We humbly ask that you continue to lift both Dad and Mom up in prayer. The journey is really just beginning, even though it seems like we have been in this nightmare forever.

Love,

Renee

We are waiting at Vandy for more tests. The pet scan is at 11:30. Dad was so funny yesterday when they were scheduling that test. The receptionist told Dad he had a pet scan tomorrow, and Dad asked, "Is that test for humans or pets?!" The receptionist told Dad that human scans were Monday through Thursday and pets were scheduled on Friday. He had better be thankful that he was there on a Thursday!!!!!

Dad was in a wheelchair all day, and we have decided that I need to be the designated driver! Kristie ran him into a concrete pole, Mom took out several door casings and Kay sideswiped something else. When the doctor asked Dad if he had any pain, he said the only place he hurt were his feet where people kept running him into the walls! He has managed to have a sense of humor the past few days.

I was still laughing after I climbed in bed last night after this zinger. Kristie was standing over by the side of Dad, and Dad said, "Kristie, you can go over and pick the bugs off that dead chicken outside. That would be a good job for you. That chicken is called fresh road kill!" Dad said all that with a straight face, but after we all laughed, we caught a glimpse of a 2 second smile on his face!

Last night when Kristie and I drove both cars to Kay's house, we couldn't find the road we needed to turn on. It was like a bad movie. It was dark, foggy and the road had no lights. My trusty navigation system gave me the bad news "You are currently traveling in an area with no guidance". AAAAAAAAAARRRRRGGGGHHH. Unfortunately, I was the leader of our caravan. We passed the road twice, made 3 u-turns, and Kristie managed a few maneuvers that would have made Darrell Waltrip proud! I had Mom and Kristie on the cell phone, and they were going back and forth: Mom would tell her to turn on the defrost, and Kristie would tell her the problem was on the outside of the window. Mom would say something else, and Kristie would tell her she couldn't see. She had bad night vision and the windows were all fogged up........! Through this entire exchange, Dad didn't say ONE WORD! It was a true "Ressie and Mildred" situation - that is a private joke that only the Jolly family will be able to appreciate. Bottom line: WE MADE IT!

He has a very busy schedule today: pet scan at 11:30, eye appointment at 1:00, catscan at 1:30 and spinal tap at 2:00. We will meet with the hematology oncologist again after all these appointments. Hopefully, we will find out some more information today.

After I went to bed, I spent a lot of time wondering what we would do if Dad WAS asked to be in the trial. Is it okay for us to make a decision for experimental treatment for Dad, knowing that he has no idea what we are signing him up for? I really think that the trial would give him the best possible treatment, but I am not sure it's right to sign Dad up for medical experimentation. Mom does not want Dad to have experimental treatment, but I don't know that she understands completely how it would work. She is very overwhelmed right now. I am waiting on the Lord to show us where we need to go. I still kind of hope that we can have a chance for the trial, but I'm not sure Mom could make the decision for Dad. If anything went wrong, she could never forgive herself. Hopefully the decision will be VERY CLEAR because we are all VERY TIRED.

Thanks again for all your prayers.

Love,

Renee

We finally left the doctor's office tonight at around 7:30. We left with what we all feel is a very clear answer. Dad still has more tests to run tomorrow, and we haven't been denied access to the clinical trial yet, but the doctor tonight said there were three issues that might give us problems. The first problem is the shunt. That could interfere with the entry point of some of the chemotherapy. The second problem could occur if there are tumor cells in the spinal fluid. He has a spinal tap tomorrow to check for any cancer there. The third and most obvious problem is one that no one can argue with. In order for Vanderbilt to perform an experimental procedure on an individual, there must be informed consent. The person must be able to understand the ramifications of the procedures performed on them. There is no way Dad could even begin to understand this process. He spent five minutes explaining to the doctor that the reason he had an incision on his head was due to wayward goats and fence mending. Apparently an errant fence post left quite a cut on his head. When the doctor told him that the incision was obviously from surgery, and asked if he could remember what kind of surgery he had, Dad just sat there. He then told the doctor that it was from cataract surgery. Talk about a very obvious answer to our prayer. Even if Dad could act knowledgeable for five minutes, long enough to sign the papers, it is still experimental. None of us are willing to put Dad through that kind of therapy when he doesn't understand why he's even there. Our next option is our last option. He will still go through a very rigorous regimen of several chemotherapy agents, the primary one being methotrexate. He will have every treatment at Vanderbilt, and I believe he will be hospitalized every other week from Sunday through Wednesday or Thursday. We were told that he will probably have exactly the same chemotherapy as in the clinical trial - except he would not receive the monoclonal antibody with it. The rituximab targets the lymphoma cells, sticks to them, and essentially causes them to dissolve (I'm sure the doctor put this in very simplistic terms for us - I seriously doubt if the mechanism of action is quite so easily explainable). If all goes well, the chemotherapy will start Sunday (maybe earlier). They told us that with this chemo regimen, 80 to 90 % experience at least a 50% reduction in tumor size. Many people have even had their tumors disappear, at least from the view of the scans. He said that this cancer has no cure; at least some cells will always lie dormant. Another interesting fact: if your lymphoma starts in the brain, it almost never shows up anywhere else in the body. We have another long day ahead of us tomorrow, we still have lots more testing to go, and we're all tired. We also have realized that Frazier didn't give us any of Dad's steroid to reduce the swelling of his tumor. It's 10:00 and the nearest 24 hour Walgreens is 30 minutes away. I'm not sure how we are going to resolve this problem, but I'm sure we'll figure it out. Sorry if there are typos tonight. I am really tired and I don't think Kay's computer has a spell check! Love, Renee

Our first appointment with the hematology oncologist is over. Her name is Dr. Reddy, and she is an extremely nice lady. She told us that dad's cancer is very rare. When we were told it was the most common form of lymphoma, they were not talking about his specific type. There are only about 1500 cases of primary central nervous system lymphoma per year. If Dad does not make it into the clinical trial, he will be given high dose methotrexate by IV, and he will be in the hospital for three days for each treatment. After two treatments, they will repeat the MRI to see if the tumor is shrinking. It will take at least 5 treatments (10 weeks) for remission. If there is no remission after 10 weeks, they will change the chemotherapy or add radiation. If he has this treatment, he has a 60% chance of remission. We are having tests run today and tomorrow to make sure the lymphoma is only in the brain. If it is anywhere else - at all - Dad can't be in the clinical trial. He has just had a bone marrow biopsy. We are waiting for bloodwork to be run. They are scheduling an eye appointment to make sure there is no lymphoma in his eyes. We are having a petscan tomorrow to check all his lymph nodes. We must pray that no cancer shows up in any of these places. Until all of these tests are run, they can't start any treatment at all. They are going to increase his steroid dose to help decrease his swelling even further. If we qualify for the clinical trial, the treatment will last for 16 weeks. He will be in the hospital from Sunday through Wednesday or Thursday, every other week. The following week would be outpatient chemotherapy. Some things will be added as time goes on, but he will be in Nashville for the duration of the treatment. We were originally told when we got here that it would take till Monday to read the bone marrow biopsy. If Dad qualified for this trial, he must check in to the hospital on a Sunday. That would mean he wouldn't have been able to start his treatment for another week. Dr. Reddy just came out and told me that she has already reserved a bed for Dad for this Sunday. They are working on the assumption that all the tests will come back within range. She said that she would rush the results of the biopsy, and have the results back by Saturday. So far, the chances of Dad being in this clinical trial look very good. We are still praying for obvious answers, and right now it looks like the clinical trial is where we need to be. We still have to talk with Dr. Moots tonight at 5:00. He is the director of this trial. We are praising God for working all these tests out. Dad had his bone marrow biopsy 30 minutes after our appointment with the hematologist. He told me that the biopsy didn't hurt at all. He thinks they gave him a shot to numb him, but the nurse told us that the shot doesn't numb the bone. She said these are very painful, but the pain doesn't last very long. He is having all the blood work done right now. The petscan is at 11:30 tomorrow, and we are waiting to hear when his eye test will happen. God is definitely keeping us in His arms. Right now, we are really optimistic. Dr. Reddy said that she didn't see any damaged brain cells when she looked at the MRI results. She feels like Dad could get back 80% of his brain function with a few treatments. PRAISE THE LORD!!!!!! I'll keep you posted. Our prayers are working (but we always knew they would)! Love, Renee

I'm up early this morning, trying to prepare myself mentally for whatever the day will bring. I couldn't sleep, so I spent a lot of extra time praying last night. I pray for obvious answers, and peace in our hearts after the decision is made. There will be no time for second guesses today. The next leg of our journey is about to begin and I am trying not to be scared to death. I don't know how we got here so fast, but I pray that somehow, some way, this cancer can be slowed down. I pray for peace for my parents and my sisters and brother. I pray for strength for myself. I pray most of all for healing for my dad. To be brutally honest, it is very hard to put the phrase, "not my will but Thine" in that prayer. I am trying.......

Please Lord, guide the doctors today as they decide which way we need to proceed. I pray that you give us wisdom to discern which treatment offers Dad the best of both worlds: healing and quality of life. I pray that you give us the ability to stay strong, regardless of our answers today. I pray that You give Dad peace and comfort as he walks this very scary pathway. I praise you because I know Dad is not making this journey alone. Please comfort my family today. Lord, I pray that you would heal my father, if it be your will (and I pray that it is). Thank you for all our blessings.

Amen

Well, it has been a very long day of "hurry up and wait". Mom finally talked to the neurologist's nurse about appointments, and she told us that she had one tomorrow at 11:00 and then she had one on October 1st. She didn't know about the conversations that had been going on between Gregory and Dr. Moots. Mom told her there was no way we could wait until October; that Dad was way too sick. At 4:00, we got the message that Dad has an appointment at 11:00 at Vandy with the hematology oncologist, and at 5:00 with the neurology oncologist. We originally thought we would see both of them at the same time, but apparently this is not the case. They are going to present us with our options. They said that we will discuss the clinical trial, and then if Dad seems to be a candidate, more testing would need to be done to determine whether he will be a participant. They will also tell us about other treatment options. My concern regarding the clinical trial testing is that Dad may not have extra time for testing to check his eligibility. All three of his therapists told Mom this morning that there was a tremendous decline in his mental and physical body from this past Monday (2 days ago) to today. They said there was a marked decline just from yesterday to today. There will be a big decision to be made tomorrow. I hate to think that Dad will be put through very rigorous chemotherapy if his brain cells are not going to come back. We still don't know if shrinking the tumor will bring Dad's memory back. We don't know if the damage already done is permanent. We don't know if waiting a little longer for extra testing will be the straw that breaks the camel's back. When do we hit the point of no return? I don't know the answer, and I have a feeling the doctors won't know the answer to that question either. Only God knows, and I pray with all my heart that He makes the correct answer very obvious tomorrow.

Gregory's parents are, bless their hearts, going to pick up Mom and Dad very early in the morning. They are taking Mom's car and their car, and meeting Kristie and me in Bowling Green. Kristie and I will take Mom's car and my car on to Vanderbilt. Dad will be very tired before his day really starts. They will have a 3 hour ride from Louisville to Vanderbilt. I have a feeling that tomorrow will be overwhelming in many ways.

I have to thank Gregory for everything he has done for my dad. He has coordinated his care from the beginning, and we can never ever repay him that debt. I know how many hours he has spent on Dad's care, and those are hours Gregory didn't have to spare. From the bottom of our hearts, we thank you and love you dearly.

I humbly ask that you to pray for our wisdom tomorrow to make the correct choices. I also ask for prayer for Dad's strength to hang on just a little longer. If I could humbly make one more request, it would be for peace for my family, regardless of the outcome God chooses to give us.

Another dear friend of mine sent me this scripture tonight for comfort.

HAVE MERCY ON ME, O GOD, HAVE MERCY ON ME, FOR IN YOU MY SOUL TAKES REFUGE. I WILL TAKE REFUGE IN THE SHADOW OF YOUR WINGS UNTIL THE DISASTER HAS PASSED. I CRY OUT TO GOD MOST HIGH, TO GOD WHO FULFILLS HIS PURPOSE FOR ME. HE SENDS FROM HEAVEN AND SAVES ME, REBUKING THOSE WHO HOTLY PURSUE ME; GOD SENDS HIS LOVE AND HIS FAITHFULNESS.

Psalm 57:1-3

Love,

Renee

I know I just updated the blog, but I have a specific prayer request this morning. I called Kay because I didn't understand how so many states could be running this trial when the information says only 43 patients will be gathered for this study. She told me that it is very difficult to get an invitation into this trial since so many people have this type cancer. Only 43 people will be accepted over the United States. It truly is cutting edge technology. Please pray this morning that Dad will hear from them soon and hopefully make it into this study.

Thanks,

Renee