Wednesday, April 23, 2014


Dear Family and Friends,

Since the last post where Dan was just released from the hospital, he has been doing well.  He has been able to reduce some of the pain meds he was taking for pain in his back and he has been doing better drinking a decent amount of water each day and even has managed to put back on a few pounds!  We were very encouraged and so we made plans to visit my mom in Florida for a mini reunion.

Recently my sister, Nancy, was able to fly to Pompano Beach, Florida, from her home in Taiwan, to visit Mom.  When she comes to the states we all like to try to see her if at all possible.  Since this is a Benchmark Birthday Year for both Nancy (60) and my Mom (95), all the siblings and spouses made an effort to get to Pompano beach that same week so that 1) we could all be together, which only happens every 4 or 5 years or so, and 2) we could celebrate their important birthdays, even though the actual birth date is a bit later in the year. 

A very YUMMY Carrot Cake was center stage.

Mom was enjoying the family all being together....and doesn't she look GREAT for almost 95?!

Mom and Nancy both enjoying the tributes given to them.

Back Row:  Jim, Dan and John
Next Row: Phil, Sharon, Jodee, Susan
Guests of Honor:  Nancy and Mom

 We were able to visit several of our NY friends (who spend much of the winter elsewhere) on the way to and from Florida, so that was an extra blessing.

The timing of the trip home was dictated by two MRI scans that were scheduled for the morning of the 18th ( Good Friday).  One scan was the routine scan of Dan's brain, and the other one was of his low back for the back surgeon to use to see if there were any surgical procedures that could be done to lessen his back pain.  After the scans we met with Dr. Breneman as usual to discuss the findings of the brain MRI.

Dr. Breneman is a very reserved, soft-spoken man, but that afternoon, he was very somber.  We both could tell immediately that he did not have good news for us.  In the past, on the initial MRI, they have seen one or two new, tiny tumors with the possibility of a couple more which then were confirmed with a high definition CT scan.  But the MRI that day showed 10 specific new tumors with multiple other “spots” that were sure to be confirmed as additional tumors by the HD CT scan.  

Back when Dan first began having multiple stereotactic radiographic treatments, we asked, “How many times can he have this done?”  The answer was, “It isn’t a question of how many times the procedure can be done as much as how many tumors can be treated at once.”  We were told then that if there comes a time when there is a “shower” of tumors showing up rather than a few individual tumors, that would indicate the need for different treatment.  Well, Friday’s findings are what they refer to as a “shower” of new tumors.

The only option left for treating the brain tumors is whole head radiation (WHR).  It would be a series of about 10 treatments, one right after the other, and it would be a one-time shot.  

With the stereotactic radiation, there have been almost no side effects at all with the exception of swelling after one larger tumor was treated and then the recent swelling that occurred from having a tumor treated in an area of the brain that had previously been treated.
But WHR almost always causes some debilitation.  It can (and often does) cause memory loss, cognitive issues, hair loss, fatigue and possibly nausea.  It can also cause hearing loss.  It often leads to dementia.  These effects may be temporary or permanent and the effectiveness is questionable. It may help for a few months or it may not help at all.  You can see that it is not particularly appealing.

Although we went to the doctor’s appointment expecting to hear there were new tumors, we really were not expecting that news and it took both of us by surprise. We could not totally process what we were hearing and Dr. Breneman suggested that we take some time to consider it…to research it and to talk to Dr. Crane (Dan’s oncologist) about it.  Our appointment with Dr. Crane was set for Tues.

So in between Friday afternoon and Tues. morning, we celebrated Good Friday and Easter.  It all seemed more intense and meaningful.  
Friday was more somber and Easter was more glorious.  How good it was to be reminded that ALL that we need for salvation has ALREADY been accomplished and Christ has ALREADY won the victory over death!!

When Tues. came, we were both hoping that maybe there was one more chemo or some other new option to consider….and yet neither of us expected it.  Dr. Crane gave us a more thorough overview of the pros/cons of WHR, saying that if it were he, he would do it, but that we needed to make our decision based on what we believed would be best for Dan. Bottom line is, the choice is to do WHR or to do nothing.  There is no other option.  Chemo is not able to affect brain metastases and besides that, I think we are on or close to the last chemo for kidney cancer.  

It felt a lot like 6 years ago when we received the prognosis of 3 to 6 months.  And yet, this time was different, too.  Although we were stunned by that prognosis 6 years ago, we really did not know what was ahead of us and God gave us much mercy and grace in finding good doctors and the latest treatments.  There was much to DO….we could throw ourselves into doing research and finding second and third opinions and looking for clinical trials and gathering you all to pray for us!  But even as we busied ourselves with all of that activity…we still knew that God was in control.  Dan’s life was still in HIS hands.  We were learning to lean on Him and to trust HIM even as we did our best to use all the gifts of medicine and knowledge and skilled doctors/nurses/technicians.  There were some really hard times and rocky roads along the journey but there was much joy and happiness along the way as well.  

But now we are at a different place.  We have gotten familiar with the journey.  We know the twists and turns in the road and are better at reading the signs along the way.  We have passed through many trials…and yet we are still a bit unprepared it seems.  We left the oncologist’s office with our minds swirling and our emotions in a jumble.  Our immediate reaction was deep sadness…and maybe a bit of fear…..fear of the unknown…  How in the world would we be able to make this choice?

I try to read through the Bible each year.  Sometimes it takes me a year and a quarter or a year and a half to get all the way through, but I just keep going and eventually finish  and then start over again.  Right now, in the Old Testament part of the readings, Israel is in the wilderness but getting close to the end of their journey and needing to capture Canaan so they can enter the promised land.  But they are fearful.  Even after all the miracles they have witnessed first hand….all the mighty things God has done just for THEM, they don’t trust Him.  They think they have to do it themselves!  

As we were driving home from the doctor yesterday, that story came to my mind.  We were being like the Israelites!  God has done so many miracles for US!  He has been so merciful and caring all along this journey….WHY would we think it is up to us now?  HIS plan for us IS the “promised land”!  Whatever that is….wherever that takes us.  The promised land WITH GOD and His plan for us is where we desire to be. We want to be Joshuas….ready to trust God no matter what.  Fearful or not, Joshua chose to believe God and was willing to follow Him, knowing God and knowing that His ways are always better…even when they are hard.   

Two songs have been playing over and over in my head these last few days.  One is a Getty/Townsend song called:
Still, Be Still My Soul, and the other is called “We Will Remember” by Tommy Walker.  The lyrics and the links to them are below:


Still My Soul Be Still Lyrics

Link to YouTube "Still, Be Still My Soul"    (an ad will pop up's worth it to wait)

Still my soul be still
And do not fear
Though winds of change may rage tomorrow
God is at your side
No longer dread
The fires of unexpected sorrow

God You are my God
And I will trust in You and not be shaken
Lord of peace renew
A steadfast spirit within me
To rest in You alone

Still my soul be still
Do not be moved
By lesser lights and fleeting shadows
Hold onto His ways
With shield of faith
Against temptations flaming arrows

Still my soul be still
Do not forsake
The Truth you learned in the beginning
Wait upon the Lord
And hope will rise As stars appear when day is dimming

WE WILL REMEMBER  by Tommy Walker

Chorus 1
We will remember we will remember
We will remember the works of Your hands
We will stop and give You praise
For great is Thy faithfulness

Verse 1
You're our creator our life sustainer
Deliverer our comfort our joy
Throughout the ages You've been our shelter
Our peace in the midst of the storm

Verse 2
With signs and wonders You've shown Your power
With precious blood You showed us Your grace
You've been our helper our liberator
The giver of life with no end

Verse 3
When we walk through life's darkest valleys
We will look back at all You have done
And we will shout our God is good
And He is the faithful one

Misc 1
Hallelujah hallelujah
To the one from whom all blessings flow
Hallelujah hallelujah
To the one whose glory has been shown

Verse 4
I still remember the day You saved me
The day I heard You call out my name
You said You loved me and would never leave me
And I've never been the same

So please continue to pray for us!  Pray that we will be like Joshua….setting our fears aside, trusting God’s plan for us and resting in that; all the while REMEMBERING all that He has done and is doing for us!

OH MY!  How God works...miracle after miracle!  I had already finished the blog today and was only waiting to put in the photos before I posted it and sent out the email.   With our physical therapy appointment and Walmart run (for prescriptions)  this afternoon and then needing to go to the grocery for a dessert for our Bible Study tonight at our house, I did not have time to complete the photos until now.  But just before the Bible Study folks arrived, we got an amazing phone call.

It all began last fall.  Dan's low back pain had gotten worse over the summer and he wanted to get one more opinion about a possible surgical solution so as soon as we got back from NY last fall, we started the ball rolling on getting him in to see Dr. Tobler, one of the premier back surgeons at The Mayfield Clinic here in Cincinnati.  It took quite a while to get an appointment and when we saw him, he really wasn't sure he could help Dan. He wanted to have some additional X-rays and have a specialist radiologist look at them and then get back to Dan.  Well, we hadn't heard from him in quite a while and with all of Dan's serious issues the last couple of months, that had sort of retreated to a back burner somewhere.  But just before we left for Florida, we got a call from Dr. Tobler's office to get a new MRI of his back and then made an appointment for us to see him yesterday.

After the devastating news from last Friday, and then again from Dr. Crane yesterday morning, it seemed pointless to even go to that appointment.  But we dutifully went and waited to hear what Dr. Tobler thought about Dan's back.  I suggested to Dan that we not muddy the waters by telling him about his brain scan;  we would just listen to what he thought about his back and tell him we would think about his suggestions.  

When Dr. Tobler came in, he began the discussion by telling us he had seen the latest brain MRI.  That was a surprise.....and then he wanted to know what we were thinking about doing about it.  We told him we really were still processing it all and had not made a decision.  He went on to talk about Dan's back, saying that it had not changed much since the fall and unless Dan was in excruciating pain, it might be best to try a back brace for right now and just watch it , while taking prudent precautions of not lifting heavy things or doing hard activities.  But then he returned the conversation to his brain scan.  He asked us if Dr. Breneman had conferred with Dr. Warnick (Chair in Neurosurgical Oncology at the UC College of Medicine.  He is also Co-Director of the Precision Radiotherapy Center in West Chester, where Dan has had most of his radiation.)  We really did not know.  We were so stunned when we were talking with Dr. Breneman, we never thought to ask that.  He suggested that we might want to get his opinion and offered to talk with him and ask him to call us.  This was yesterday.  He called tonight.   He felt we were jumping the gun a bit in considering WBR and suggested instead that they approach the stereotactic radiographic surgery from a different angle, going for the bigger, more dangerous tumors rather than trying to obliterate all of them.  That would buy Dan some more time without the more serious side effects of WBR and perhaps give the chemo a chance to get ahead of the disease in the rest of his body.  

We had not even realized that that was an option! We are so glad we kept our appointment with Dr. Tobler and very grateful for his thoroughness and for his willingness to call Dr.  Warnick on our behalf and VERY grateful for Dr. Warnick taking the time to call us and discuss this over the phone and then talking with Dr. Breneman about it. 

As it stands right now, we are waiting for a call from Dr. Breneman's office to set up the high definition CT scan that he and Dr. Warnick with merge with the Fusion MRI Dan just had.  Then they will plot out which tumors they will attack with radiation.  

In the meantime, he upped Dan's dose of steroids and suggested that his symptoms he had which sent him to the hospital last month were more likely a case of adrenal fatigue from being on steroids long enough for his adrenal to quit working adequately.  

We are SO GRATEFUL for this latest development and feel it is the right thing to do at this time.  We feel strongly God was moving on our behalf to cause all of these things to happen so quickly.  For the few who already knew...THANK YOU for your prayers!!  We have a God who hears and acts!  For most of you who had no idea that this was going are also precious to us...and we covet your continued prayers for all of these later developments as well as for the requests put forward in the earlier part of this update.  We STILL want to be like Joshua!  Love, Jodee and Dan

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