Back-tracking And Snow Tracks

Wow…it has been way too long since you all have heard from us.  And I know that some news trickled out there back in Nov. when we had a little "incident" that took us to the ER.  Forgive me for not filling you all in better.  You have been so faithful in praying for us and encouraging us….I really do intend to keep you well informed, but felt like I didn't have all the info and the tests and results kept getting pushed back, so I kept waiting.  

So, here we are…almost 4 months after the last radiation treatment and my first update.

Well, as you can imagine and as has already been hinted at, much has happened in the last 4 months.  Thankfully, not all of it is directly related to Dan's battle with kidney cancer, but it is all intertwined and makes up the fabric of our lives (as opposed to cotton…..that's a joke…get it?  OK..it was a bad joke…moving on….)   Because all the medical stuff happens in the midst of just regular life and we do our best to focus on that "regular" part of life, it is all sort of mingled together in this blog.  But if you want to cut to the chase, just read the next 2 paragraphs and then jump down to just below the photos of Dan at the BCS National Championship.  Otherwise you will get a glimpse of the last couple of months with the McCabes :-)

When you last heard from us, Dan had undergone a stereotactic radiographic surgery procedure with the use of a halo.  They had used precision radiation to zap 4 tumors in his brain, one of which was larger than he had ever had before.  Whenever they do these procedures, they put him on a descending dose of steroids as well as an anti seizure medication for a certain length of time.  Both are meant to reduce the chance of seizures caused by swelling in the brain as it reacts to the changes that take place when the tumors die.  Always before the meds worked like magic and Dan had never had any symptoms at all from the radiation procedure.  Well, there is a first time for everything, they say.  That procedure was done on Oct. 17.  On Nov. 19th, we were both relaxing at home.  We had just returned from a week long visit with my mom in Florida the day before and had been busy that day unpacking and beginning the prep for Thanksgiving at our home later that week.  While watching TV, I heard Dan mumbling and asked him to speak more clearly.  When he continued the mumbling I sat up to look at him, thinking he had perhaps fallen asleep and was talking in his sleep.  He was sitting there…sort of looking straight ahead but not really at me, speaking gibberish.  I was VERY concerned.  I waited a few seconds to see if he was able to get clear speech out and then called our son, Tom, at the firehouse.  My first thought was stroke but very quickly it moved to "more tumors".   Tom had me put Dan through some neuro screening tests like smiling wide (to see if both sides of the face respond equally), pushing with both hands, lifting both legs, etc.  By the time we went through all of that he had me ask him to say "The sky is blue in Cincinnati" and he said it perfectly well!  But we were still concerned.  I took him to the ER and had him checked out for a T.I.A. (transient ischemia attack  or a sort of mini stroke)

We arrived at the ER at about 7:45 p.m and it wasn't busy!  I was so relieved that we got right in.  The ER folks ordered a CT scan and on that they saw some swelling in the area of that larger tumor that had been treated.  They felt that was most likely the cause of the symptoms but wanted to do an MRI and some other follow-up tests to rule out a cardiac related event, so they admitted him.  

After all the tests, it was determined that the swelling was the culprit and he was put on more steroids and more anti seizure medicine.  Those are normally given for a short time but apparently, he needed them longer in this case.  He has been symptom free from that while on the meds.  PRAISE GOD for that!  He was released from the hospital on Nov. 20th late in the afternoon.  We celebrated Thanksgiving on Friday that week, b/c Tom's crew at the firehouse had to work the holidays this year.  Below are pictures from our Thanksgiving Family Time:

It's tradition for Morgan and Emma to come the day before Thanksgiving and help me prepare food for the feast.  Their favorite is cooking the cranberry sauce.

This year they helped me chop the celery for the stuffing.  That takes a long time so it's a big help for me to have it all done ahead of time.  Thanks, Emma and Morgan!!

My brother, Jim, and his wife, Alyca, came for Thanksgiving.  Since we were cooking the dinner, we treated ourselves to breakfast out at The Half Day Cafe that morning.

                                                          Fall symbols set the stage…...

                             The table is finally ready….now for the food!!

                                                                    YUM!

The next day, Megan took Dan to the Ohio State vs. U of M game and watched the BUCKS beatthe Wolverines.  Go BUCKS!!

The next weekend we were able to attend an open house at Megan's workplace.  She and Ryan Miller bought a building this year to house their marketing company and they had invited clients to celebrate with them.  We were happy to see their success and to meet with many of their clients and employees.

                              Ryan and Megan ready to greet their guests

                                 Ryan and Dan giving homage to OSU

That same weekend, we celebrated Matthew's 7th Birthday.  It's close to Christmas so we have to work a little at showing him it really is special :-)

We went through the Christmas and New Year's holidays with no more symptoms, praise the LORD!!!  Once again, we celebrated Christmas a day late b/c of Tom's schedule at the firehouse.  On the actual Christmas Day, we had dinner with friends from church and enjoyed the fellowship.

My birthday was celebrated somewhere around this time too......but let's just not go there........

We actually had a little snow before Christmas this year.  It wasn't much but helped us feel as if it were actually time for Christmas.  Over the years Dan has gotten smart and put those outside lights up before Thanksgiving on some nice WARM weekend.  We just don't turn them on until after Thanksgiving.

Karla had to work the day after Christmas when we were going to have our Family Celebration, but dinner was late enough that she could share in the festivities.  Turned out that we got a pretty good amount of snow that day so we had a beautiful "White Christmas".  The only problem with that was that Tom needed to go out and plow!  sigh.  Well, he did his best to be at our house for our Christmas Dinner.  We had a wonderful Christmas Celebration together.

Dan's original schedule for his normal follow-up MRI was the first  full week of January but our daughter, Megan, surprised him on Christmas with tickets to the BCS National Championship Football game in Miami. His beloved Notre Dame Irish were playing The Tide of Alabama and he had tried to find tickets but had had no luck.  She managed to get tickets from a rabid Alabama fan which meant that they had to sit with the "enemy" but at least they could go!   It was a major "fail" on the part of this photographer to not get a photo of his surprise!   He was thrilled and had a marvelous time (well, until the game, anyway….all of you sports fans know how that ended up :-(  )  and got to reconnect with some of his ND buddies and support his favorite team and spend some quality time with his daughter.   SO….the follow-up MRI got delayed a week or so.  

While in Florida for that game, Megan and Dan got to visit with my mom.  It is hard for the grandkids to get to Florida to see her so it is always a treat for her to get to spend some time with one of them.  Meg took Dan and Mom to The Olive Garden for supper Friday evening and I know Mom enjoyed the time with them.

Below are some photos from their time in Florida for the "big game".

Meg, Mom and Dan.  I think Mom looks pretty awesome for 93, don't you?

                   Nothing like some quality father-daugher time!

After Dan returned from Florida he had his full body CT scan and bone scan.  The results of those were good…the radiologist saw no changes so at least the new chemo is holding the disease in check in those areas.   We PRAISE GOD for that and are so very, very thankful!

On Thursday of that week, we had the 3 grandkids after school and for dinner. Tom and Karla needed help with transportation for Morgan to her AAU Volleyball practice.  We decided to have a mini family celebration for her 14th Birthday (which was actually the next day) since we were going to be out of town on the weekend.  I still cannot believe that we have a granddaughter who is 14!  She continues to make us proud with her hard work, her willingness to be responsible and her kindness.  

The next day (Friday, the 25th) he had his high definition MRI and immediately following that we saw his oncology radiologist.  The good news was that the 4 tumors that they treated the last time, using the halo, have responded as expected, with the slight exception of the greater swelling than was expected in the one area.  The not-so-great news is that there are two new small tumors.  Those will need to be radiated as well.  This time, they will be able to return to using the mask, which is a much less burdensome procedure for the patient so we are grateful for that

We asked the oncology radiologist how many times Dan could endure this type of treatment and he didn't really answer that exactly, but said that for the foreseeable future, as long as we kept catching them when they are small, we can keep ahead of the game….sort of like playing "Whack-A-Mole".  We asked about whether or not we should consider returning to Avastin, which seemed to be able to stop the tumors in the brain as well as the rest of the body, but he said that b/c the Avastin posed a fairly certain risk to the one good kidney, it would be wiser to stay this course, beating down the tumors as they appear, as long as the InLyta  controls the cancer in the rest of the body.  Later that same morning we saw his regular oncologist and he concurred with that conclusion.

I can't deny that we were disappointed.  We were hoping against hope that this time the InLyta would have gotten far enough ahead of the disease to keep tumors from forming anywhere but considering the prognosis of anyone who has kidney cancer we are so very fortunate to have a drug that is working as well as it is with almost no side effects and also to have the miraculous stereotactic radiographic surgery available to fight the brain tumors.  We remain so very grateful for all that God has and is doing for us and in us through this journey.  And , of course, we are incredibly grateful for the love and prayers and encouragement of all of you.  You continue to humble us and to teach us about faithfulness and compassion and trust.  Thanks you all so much!  

OK...well that takes care of the "back-tracking".  We are in the midst of making snow tracks right now. The day after the MRI and multiple doctor visits, we got on a plane and headed to Colorado.  One thing that both of us enjoys equally is skiing.  We are spending this week enjoying God's amazing creation while gliding down the mountain at Breckenridge or riding back up on the chair.  The sheer awesomeness of what we see each day is affirmation of God's greatness and power.  What could be more comforting?  

Dan and Jodee

A "HALO" OF AN EXPERIENCE.......

Dear Friends and Family,

Yesterday was the day for Dan's procedure.  He was slated for the stereotactic radiographic surgery of 4 tumors in his brain.  He has had this procedure 4 times before but each of those times, they were able to use a custom fitted mask to immobilize his head for the HD Cat Scan and for the actual radiation.  But this time, that newer machine was being serviced as that whole building was being renovated and so he had to have this procedure done at another location (in downtown Cincinnati) with an older model machine.  With this machine they needed to use a metal "halo" to immobilize his head.  That halo was attached to his head with "pins" that went through his skin and pressed agains his skull.  We were relieved to learn that part b/c I thought they actually had to screw it into some of the bone of his skull.  So we were not terribly excited about this but neither of us felt as if we should wait for that newer machine to be up and running (at least 4 weeks) to get this done.

Megan had come home Tues. evening to be with us through the day.  Neither of us knew exactly what to expect other than we were going to be down there all day.  I was glad for the company!!  We all got up before 6 a.m. and were out the door at 6:30 a.m.  

Since we were leaving so early I wasn't worried about traffic.  MISTAKE!  By the time we got to the Norwood Lateral, the traffic for the next exit…OUR exit…was backed up and at a standstill.  That added 10 to 15 min. to our trip and caused some stress.  In the end we were only 2 min. late and no one seemed upset about it so that was good. :-)  We managed to find where we needed to be and we were greeted by our pastor who had beaten us there!  After we visited for a little bit, he read Psalm 145 for us and prayed with us while we waited to begin.

Very shortly we were taken in and started on all the prep…things like paper work, vital signs, explanations, etc.  While this was going on, good friends from our P & G days, Terry and Sue Galvin,  came to keep us company.  Terry has  had his own experience with radiation in that very place so it was great having him there to show us around.  And chatting with good friends sure makes the long day go by faster!  

The doctors stopped by to tell us that there was possibly a 5th tumor that needed to be treated. They would know better after this latest CT scan was merged with the MRI.

By 8 a.m. Dan was off to have the halo attached and the HD cat scan done.  They gave him a sedative that didn't put him "out" but told him that he wouldn't remember anything.  Then they anesthetized the local areas where the pin would be set and attached the halo.  After they had the halo in place, they could attach him to the table in the exact position he'd be in when he received the radiation.  That way the CT scan would allow the doctors to precisely map out the radiation strategy. and replicate it perfectly when doing the radiation.

Now normally, with the mask, he would have had the CT Scan done a couple of days earlier b/c it is no problem to put the mask on and take it off, but b/c this time they were using the halo to immobilize him, they needed to do the CT Scan the same day as the actual radiation.  After the CT scan is done, the oncology radiologist and the neurosurgeon plot out the exact angles of the beams of radiation and how much….sort of a "blueprint" for the radiation.  That takes a few hours to accomplish.  So during that time, he was brought into our waiting room.  They fixed a recliner for him and tried to make him comfortable for the nearly 4 hour wait.   Below is a photo of him after they got him settled.

He was still pretty groggy from the sedative.  The resident told us that while under sedation, Dan had made some "interesting" comments about the Xavier Basketball team.  He had been discussing that topic with the resident right before being take in for the halo attachment so that was what had been on his mind just before the sedative.  I told him it was a good thing he was not talking about me right before going in there…….  :-)

All three doctors…the oncology radiologist, the neurosurgeon and the resident all came in to tell us that after reviewing the new CT scan/ MRI merger,  there were only 4 tumors that needed to be treated.  The other "suspicious spot" was a remnant from a previous procedure.  YAY!

They brought him breakfast and lunch while he waited.  During that time another couple, Sherrill and Norma Puckett,  who are good friends from church,  came to sit with us.   Interestingly, they knew Terry and Sue so we all had a good chat.  Megan was learning a lot about the aches and pains of later years….I know she was thrilled to learn all that.  But Terry was able to chat with her about running and biking and triathlons for a bit so she didn't get totally left out of the conversation.  Plus with back surgery at 19 and 2 collapsed lungs and lung surgery at about 25, she started early on her medical issues so she had some stories to share as well.

When she got bored with the conversation, she had work she could do via computer.  Thank goodness for available wifi there!  It is a huge help for those waiting for long stretches!!

Dan joined in the conversation some, but spent most of the time dozing.

At about 2 p.m. they came to get him for the actual procedure.  I mentioned earlier that the oncology radiologist and the neurosurgeon plot out the strategy with all the angles of attack and the doses of radiation, but I just found out that they don't actually apply the radiation.  A physicist does that.  The physicist came in to the room and explained it a bit more to us and turned on a TV so that we could actually watch the procedure while it was going on.  

At about 3:30 p.m. he was finished and they removed the halo.  We hopped in the car and headed for home.  Dan claims it wasn't as bad as he had anticipated so we are grateful for that.

We won't really have any "results" for 3 months when they do the follow-up MRI.  Please pray that this radiation would be effective in stopping these tumors and that the chemo he is taking will stunt or prevent any new growth.  

As you pray for us, please pray for our daughter-in-law, Karla, and for her whole family.  Her father is now dealing with serious health issues too.

We are so grateful for such wonderful friends and family who make the time to support us with visits and cards and PRAYER!   

With much love and gratitude,  Jodee and Dan

GOOD NEWS / BAD NEWS X 2

Dear Friends and Family,

It has been a little over 3 months since our last update and for that, we are very grateful!  B/c it means that for 3 months there have been no doctors and no tests and no significant symptoms!!  Thank you, LORD!!

We were able to be at our lake house in upstate NY, enjoying incredible weather, wonderful times with our children, grandchildren and friends, hearing great Bible teachers at Camp of the Woods and enjoying rich fellowship at church and the Ministry Center.  We even managed to get in 5 kayak trips.  That is a record for us!  I'll include some photos from those great times at the end of the update.

I know the main reason you read these updates is to hear what is going on with Dan's cancer treatment.  So I'll get on with it.

After a glorious 3 months of relative "freedom" (Dan only had to take one pill twice a day!), we returned home to Cincinnati last Sat.  We had a fairly uneventful trip home, stopping along the way to visit Megan in Columbus. 

You know, anyone I have known who has had a serious illness for any length of time, has often described it as being on a "roller coaster ride".  There are so many ups and downs and the changes are often abrupt and surprising.  The highs are often higher than expected and the lows are often lower than expected.  Today we experience a bit of that phenomenon.

GOOD NEWS # 1:  First thing Monday, Dan was at Jewish Hospital getting his CT scan and bone scan done.  Dr. Crane called right away with the results of the CT scan saying that it looked "stable".   We figured we would have to wait for our appointment with him to hear about the bone scan.  This morning we met with Dr. Crane and got the results of the bone scan.  That, too, showed no change.  In Dan's situation, that is GOOD NEWS!  They always check his kidney function and his blood pressure b/c those are two areas where the chemo can have an adverse effect, but both were in normal range.  We will be carefully watching the blood pressure b/c it was on the high side of normal, but anything with the word "normal" in it sounds great to us!  

BAD NEWS # 1:  After a quick lunch, we headed to Precision Radiation for his HD MRI.  This was to check on the effectiveness of his radiation last May as well as checking for any new tumors.  We had an appointment with Dr. Breneman right after the MRI.  His resident showed us both the MRI from May and the MRI from today.  The tumors that were treated in May are gone but there are 4 new tumors.  One of those is larger than any of the earlier tumors and it is located in the motor region of the brain.  

I can't say we were surprised.  It would be hard to surprise us, I think, at this point, but we were disappointed.  We can't help but hope that the chemo will get such a grip on the disease that it would protect the brain as well, even though we know that the brain is protected somewhat from the effects of the chemo.

GOOD NEWS # 2:  What is good news is that all 4 tumors are still small enough to be treated by the miraculous stereotactic radiation that does almost no collateral damage and seems rather like magic.  It requires that Dan take an anti-seizure medication prior to the event as well as steroids following it for a short time, but all in all, it is normally quite an easy procedure for him to endure.  Yes….I said "normally".

BAD NEWS # 2:  The whole medical building is under renovation and the miraculous machine that does that kind of radiation is out of commission for at least 4 more weeks.  The docs don't want to wait for 4 weeks (neither do we!!) so Dan will have to have this done at the Barrett Center at U.C. with an older machine.  This will not allow him to be able to use the mask that he has used the last 4 times he has had this procedure.  Always before, he could go in and have a special CT brain scan while immobilized in his mask a day or two before.  Then the neurosurgeon and the oncology radiologist would merge that with the special MRI to get a holographic image of his brain to plot out the exact intersections of the beams of radiation.  On the day of the procedure, once again, he would be immobilized in the exact same position in that mask and they could aim the radiation with precision.  

B/c they can't use that machine, he will have to have a metal "halo" screwed into his skull in order to keep a precise lock on his position.  That sounds really barbaric but I know they have done this for many different procedures for years.  Anyway…b/c of this, the special CT scan needs to be done on the same day as the actual procedure and that means that the two doctors have to plot out the map for the radiation on that day as well.  Dan will have to be sedated and anesthetized and will be at the hospital all day.  So this makes it a much bigger ordeal.

They have tentatively set this up for next Wed., Oct. 10 although they need to OK that with the neurosurgeon's office before we know for certain.  We should get confirmation tomorrow.
(This has been changed to Oct. 17 b/c the neurosurgeon was not available until then.  We are hoping to get bumped up to Oct. 10, but that is doubtful.)

As I think back over the summer, I'm so grateful for having the opportunity to sit in on some counseling sessions at the ministry center.  We even got to join in a bit in encouraging others about trusting God's love for them and His sovereignty in all aspects of their lives…..even when it doesn't "feel good" or seem like what we would consider "best".   Each time we remind others of the truth of God's Word, we are reminded as well.  So our disappointment is softened and we are comforted with the knowledge that He knows and it all will be for our (eternal) good and His glory.

We are so grateful to know that so many of you have been faithfully praying for us.  It is almost too much to take in, really.  But it is so comforting to know that.   So once again…thank you, thank you, thank you!  Jodee and Dan

Tom's family brought another family with them and one day they all went to......


























The Extreme Adirondack Adventure.  They all had a great time and I was so intrigued by the photos, I'm in training now so that I can go with them next year :-)  The photo to the left is Morgan working her way across one of the more difficult challenges.  All of these are really high off of the ground.

Emma didn't want to miss out!  She took to this like a duck to water!

Matthew thought this was great!  

We had great food, especially when Tom and his friend, Brett, were there.  They did most of the cooking.  On the 4th of July we celebrated my sister, Nancy's, birthday with 2 of Brett's famous Mile High Apple Pies.  YUM!

When Megan visited, she participated in the Piseco Sprint Triathlon and made the front page of the Hamilton County Express! 

The sunsets were still glorious.........

The hikes were full of nature's beauty...........

The kayak trips were full of adventure........

......including the sighting of a bald eagle, although this particular fellow Megan captured on camera  right on Oxbow Lake.

As the summer wound down, the nights got cooler and there were even a few days when a fire in the fireplace felt good and the cabin was warm and cozy.......

JUNE SCANS

Dear Friends and Family,

At the time of my last blog post, Dan had had his follow-up MRI to check on the effectiveness of the February radiation and while the results of that procedure were excellent, there were two new small tumors that needed to be dealt with.  We had been told that on May 25th he would have the next stereotactic radiographic surgery on his brain.  Then the office called and said they had an earlier opening and his "procedure" would be moved up to May 18th. 

Well, there was some miscommunication from the doctor's office and when we went, expecting the procedure to be done, they were merely doing a high definition CT scan which they merge with the MRI in order to get a holographic image of his brain from which to plot the angle of "attack" of the radiation.  We have found this aspect of frequent medical treatments the most frustrating and stressful of this journey.  

The actual procedure was, in fact, still on May 25.  

On that day we arrived at the correct time of our appointment only to be told the neurosurgeon had had an emergency surgery and our procedure would be 2 1/2 hours later.  I let them know that they should have given us a call.  This office is usually very helpful and were apologetic.  We were able to get one errand done in between and returned at the new time, only to wait another hour.  sigh.  Such is the life of folks dependent on frequent medical  treatments.  I was grateful for Sudoku books and for the guest wifi in the waiting room.  But mostly, we are grateful for this miraculous technology that has been so effective in treating these small tumors with no collateral damage.

The following day we left early in the morning for Florida for a family reunion.  My sister, Nancy, was in the states for meetings at her mission headquarters in Wheaton, IL and really wanted our whole family to get together.  We were able to trade some of our timeshare points for a condo nearby and spent the week near Mom in Pompano Beach.  The following photos were taken at a local Cracker Barrel where we all got together for breakfast one morning.

My sister, Sue, who almost always has a smile to share.

My brother Jim,  sister Sharon and sister-in-law Alyca….deep in conversation.

Closest to farthest…..brother-in-law Phil, brother Jim, Mom and Dan

My sister Nancy and brother-in-law John (our official photographer).  John did a MUCH better job than I did documenting this

event.  I'm looking forward to seeing all of his photos.

I know Mom really enjoyed having all of her children around her but I think it wore her out, too.  I'm beginning to understand that phenomenon.

After our time together with family, we drove back to Cincinnati to unpack, repack for NY, pick up our dog and head to NY.  We drove home on a Monday (yes…all 1100 miles in one day!)  

By Thurs., we were on our way to upstate NY to open up the cabin and also to attend a wedding.  Our time there was pretty short but b/c of the wedding, we got to see a lot of friends quickly.  Being up there before the crush of summer visitors also gave us a chance to get a lot of chores done on the cabin in a short amount of time.  The following Tues. we packed up again and headed back to Cincinnati.

We had to come back to OH for Dan to get his next schedule of scans (CT of the rest of his body and bone scan).   He had been having elevated back pain and I have to admit that I was a bit more anxious about these scans than I have been for awhile.  I had to keep reminding myself of all that God has brought us through and that He is STILL trustworthy, regardless of our circumstances.  I am finally "getting" why God had to keep telling the Israelites to REMEMBER. We all forget so very quickly.

He had his scans on a Friday and came home with the written reports.  IF you have ever tried to read a radiologist's report, you know they are not all that easy to clearly understand.  We are getting better at it, but this time there was a comment we did not understand and were a little concerned about.  That same afternoon, while we were out, his oncologist called to tell us the scans looked good.  Since we were not there to speak with him, we didn't get to ask him out that one comment but his call reassured us somewhat.

The next Tues. Dan had an appt. to see the oncologist and to get another injection of the bone-strengthening drug he gets inter venously. He quickly answered our concerns and I could tell he was very happy with the scan results. (So are WE!!)  We were given the green light to stay in NY for the summer.  YAY!!

We are praising God that both of his scans looked very good and at the same time are reminded that God's grace is sufficient for when scans are not good, just as it is when they are good.  It is good to have the fellowship of other believers to remind us and encourage us along the way!!  We are so grateful for each of you!

So now the summer is in full swing.  We are in NY to stay (Lord willing)  until Oct.  with the exception of one or two short side trips.  When we came this time, our 3 grandchildren accompanied us.  Morgan and Emma are at Camp Tapawingo this week and Matthew is "camping out" with Mimi and PopPop. 

   

Playing Dominos with Mimi and PopPop at the cabin.

Morgan, Emma and Mimi on the boat taking us to Tapawingo Island.

Emma as an "OKIE", ready to take her swim test.

Morgan getting settled into Comanche Cabin.

On Monday nights COTW has a carnival for the families.  Matt had a lot of fun there.  This was just one of the fun things he 

tried last night.

When PopPop and Matthew went upstairs to play air hockey, I took a walk down by the beach.

The cloudy sky was evidence of the cold front moving in.  It felt more like a November evening than one in June…it was 54 out, but still beautiful.

Through all the car rides and the cabin prep and the medical tests and doctors' visits and the playing with grandkids, Dan has done super well.  He still has some back pain but we think it is from damage done by the disease earlier and/or the various chemo treatments.  So far he is able to manage it with Tylenol.  He truly is a walking miracle.

Camp of the Woods is now open so my volunteering there begins and we are soon to embark on our first observation training at the Ministry Center.  Yesterday I picked up my sister, Nancy, from the Syracuse airport and today Tom and Karla arrive with another family.  They will all be here through next week.  The girls come back from Tapawingo on Sat. morning.  So we will have a houseful! 

We are so grateful that God has given us another summer of enjoying His beautiful creation with family and friends, the opportunity to hear wonderful teaching at Camp of the Woods and at The Adirondack Bible Chapel and the privilege of serving Him in small ways wherever we can.

As it stands right now, Dan will make a short trip back in mid-September for his next round of scans and the MRI to check the effectiveness of this last stereotactic radiographic surgery.  I'm hoping to not have much to tell you between now and then other than happy posts about our summer activities.

Thank you to each and every one, for partnering with us in prayer and encouragement.  We keep trying to adequately express our thanks

and I know we aren't even coming close to really being able to tell you how much it means to us.  Thank you, thank you, thank you!!

Jodee and Dan

ANOTHER PROCEDURE

Dear Friends and Family,

Tuesday Dan had his follow up MRI to check on the effectiveness of the stereotactic radiographic surgery he had on his brain in February.  Although the procedure was completed in less than an hour, it takes several weeks for the full effect to be evident so they wait for 3 months to verify with an MRI.  

They were very pleased with the results;  the former tumors are essentially gone.  BUT they found two new tumors.  Thankfully, these are also very small and b/c there are only two, the same stereotactic radiographic surgical procedure can be used.  (That mask we saved from the first procedure is sure getting used a lot!  This will be his fourth!)  We ask how many times he could safely have this procedure done and they explained that that wasn't the criterion for eligibility.  What determines his eligibility is the size of the tumors and the quantity at one time.  If they are too large or too numerous, this procedure would not be appropriate and the only thing left would be whole-head radiation which often has very negative side effects and can only be done once.  So  you can see why we are very grateful for this procedure!  Originally they scheduled this next procedure for May 25th but yesterday, they called to tell us there was an opening today, so we moved it up.  He will have this new stereotactic radiographic surgery at 1 p.m. at Precision Radio Therapy in West Chester.

Dan has been on the new chemo for seven weeks.  We are happy to report that there are no evident side effects as of yet except for possibly a slight rise in blood pressure.  That is a known side effect of this drug so we are watching that closely and if it stays elevated or increases, he will need to take medication for the blood pressure as well.  He feels great and looks great and we are very grateful for that!  We are hoping that these new tumors are still a result of his being off of any treatment for a year, realizing that it takes a while for any chemo to get ahead of the cancer.


His next set of scans (CT and bone) are scheduled for mid June so we will then see what is going on in the rest of his body.  Hopefully, that will be a non-event.

This Sunday we "celebrate" our 40th Wedding Anniversary.  Well, celebrate might be an overstatement :-)  We don't have any special plans.  We might make it to The Cheesecake Factory for their fabulous strawberry shortcake....... May never seems to be a good time for a big celebration, but we are hoping to take a special trip somewhere later this year to mark the occasion.  It is truly amazing to both of us that we have been married that long…it seems impossible!  And, of course, 4 years ago, it really did look impossible.  But our God is THE GOD of the impossible.   Once again, we are reminded to be grateful for each new day (yes…we STILL need to be reminded, but maybe not quite as often).


We have gotten to share in a couple of big days in the lives of our grandchildren recently and we are very grateful for that.

Morgan with her mom and dad after her confirmation in April

Emma at the dress rehearsal for her First Communion

So….we still covet your prayers….for continued growth in faith, for peace and joy in the midst of the storm and for faithfulness to our many friends who are also going through tough trials.  Love, Jodee and Dan

NO PAUSE BUTTON

Dear Family and Friends,

This has been a very hard couple of weeks for us.  Our small church family in Ohio has had more than its share of "bad" news lately.  I put the word bad in quotes b/c  when we truly believe in God's sovereignty, it is hard to intellectually view anything that He ordains as "bad", and yet it can often FEEL really bad to us in the moment.

We lost a dear friend not long after a surgery;  another good friend was diagnosed with a very rare disease that produces too much protein in his bloodstream.  Another dear friend has just been diagnosed with stage 4 pancreatic cancer and another good friend had a significant stroke, leaving most of her left side paralyzed. And a young member (8 years old) broke his leg in the growth plate, which could set up complications later).   It is almost too much to really take in.

I know the purpose of this blog is to communicate with those of you who are faithfully praying for us as we deal with Dan's stage 4 kidney cancer.  But the rest of life still comes at us, even in the midst of dealing with that.  There just doesn't seem to be a "pause button" anywhere.

I'm glad to report that Dan finally was able to begin his new treatment of axitinib or Inlyta by brand name, and has been on it for about 1 1/2 weeks now.  Happily, no adverse side effects have shown up yet.  Often these drugs take a while to build up before that happens but so far, so good.  He has also been able to receive his first injection of the bone strengthening drug which he will receive approximately once a month.

He has had one more set of scans, right before beginning the drug and there had been no significant changes so that was good news since it took us so long to get going on a treatment.  He will have his next scans in June, so barring any unpleasant surprises, there may not be another update until then.

With all the major medical issues happening to folks we know and love, we humbly ask for your prayers for them, for our church family and for us as we look to ABBA FATHER and try to grasp what He has for us in all of this. Our prayer is that we would be instruments of comfort and encouragement to these dear friends, just as you all have been to us, and that God would increase our and their faith and confidence in His love and His plans for them, even in the middle of these trials. 

Thank you all AGAIN, for your continual prayers and encouragement.  With Easter just being celebrated, our gratitude for such amazing redemption is overflowing and only adds to our gratitude for each of you.    Love, Jodee and Dan

SORTING THROUGH THE OPTIONS

Friends and Family,

A lot has happened since the last update but we still are not certain of the next steps for treatment.  Since then Dan has had the stereotactic radiographic surgery on his brain.  The tumor there was about the size of a BB.  The doctors felt the procedure went well. Dan said he just laid down and took a short nap and then it was "over".  It is easier than most doctor's office visits!   We won't fully know the results until sometime in May (unless a clinical trial before then requires earlier tests), when they retest him, but we are assuming the results will be as excellent  as they have been in the past. 

On Feb.12 we went to the Biblical Discipleship/Counseling Conference at Faith Church in Lafayette, IN.  Not only were we there with 8 others from our church in NY, but we ran into a friend from PA and 3 friends from College Hill days who now attend Faith Bible Church here in Cincinnati.  It isn't too surprising to run into folks you know there.  There were 1725 in attendance!  

Dan and I were in two different tracks so we were hearing different topics.  We were in class from 8:15 a.m. until 6:30 p.m. most days.  It wasn't as emotionally or mentally draining as last year, but hard physically to sit so long each day....and still challenging.  

We returned home from that on Feb. 17 in time for Dan to attend the Men's Retreat from ECC (our OH church).  Monday, we had our appointment with Dr. Rixe, the kidney cancer researcher at U. of Cincinnati.  Much to our dismay, we learned that he, too, is leaving our fair city.  We did meet the doctor who will be taking over the research projects and we heard about one possible clinical trial that Dan would qualify for.  It is a "phase 1" trial. That means that Dan would be in the first group of humans to receive the drug.  Up until now, only lab rats/mice were given it.  hmmmmm.  Not our first choice.  The other option we learned about was a new kind of stem cell transplant being done in Bethesda, MD.  While that sounded a bit more promising, it would require a sibling "match" and living in Bethesda for about 4 months.  Dan only has one living sibling and there is probably less than a 50% chance of her being a close enough "match".  Plus I know that he really wants to get this discipleship/counseling ministry up and running and doesn't want to be in Bethesda, MD for 4 months.  But it remains a possibility.

Dr. Rixe also recommended that we talk with Dr. Rini, at The Cleveland Clinic.  He thought they might have a clinical trial or two there that Dan might qualify for.

After talking with Dr. Rixe, we felt that much of what we had to do in the next week or two was to do a lot of research, phone calling and thinking and praying and all of that could be done from NY.  We had planned on being in NY but were not sure we could go.  We decided sort of "spur of the moment" to go home, pack and leave the next day.  

While we were driving to NY, I thought...."we drive right through Cleveland.  Maybe, if we are really lucky, we could get an appt. at The Cleveland Clinic the day we are driving back home and save ourselves a separate trip."  Well that sounded like a good idea.  And I think out of respect for Dr. Rixe who had referred us, Dr. Rini made time to see us that day.  The only problem was that it meant NEEDING to leave NY at a specific time and we had sort of planned NOT to need to do that so we could work around winter weather.  You know what is coming...right?    Yeah.  NY hasn't gotten hardly any snow all year but right after we got there, they got a fair amount of snow.  And just before we left a big snowstorm arrived.  We kind of worried about when we should leave for 3 days and after all of that, ended up leaving in the middle of the storm!    More on that a bit later.

Well, we ended up visiting when the NY schools have "winter break".  Their school year is from Labor Day to the end of June and they get a winter break in addition to a spring break b/c the winters are so long and hard there (usually).  So many of our friends were gone on family vacations and a few more regular snow-birds were still down south.  BUT we did get to see several friends and had good visits.  We also got one day of fun in the snow....snow shoeing around the ministry center lake.

This is Dan (center) with Al and Audrey on our trek around the Ministry Center's Lily Lake.  

Dan and I were enjoying the snow.  Cocoa was enjoying the hike too! You can see that it was truly a "winter wonderland" that day.

A dear friend let us stay at her beautiful home rather than to have to open and close our cabin.  I know that that made the trip easier and more enjoyable for Dan, not having to worry about all of that.  

                        Dan, relaxing, doing his beloved Sudoku.

Thanks, Joan!!  Just wish you would have been there with us!!

Well, we waited for that storm to come and go.  Originally, it was predicted to be finished by mid afternoon on Thurs.  We planned to leave then, drive a few hours, spend the night and then drive the rest of the way to Cleveland on Friday morning.  Our appt. was at 1 p.m.  Cleveland is about 7 hours from our place in NY under good conditions so we knew we would need longer.  Based on the forecast, the worst of the driving conditions should have been between where we were

and Syracuse.  But they kept moving the end time of the storm later and later.  At first we thought we'd just wait till it ended (supposedly at midnight now) and leave around 3 a.m.  But then it looked like the snow  was going to last all night Thurs.  THAT was NOT good.  I finally decided that if I was going to have to drive in the snowstorm, I'd rather do it in daylight so we left about noon on Thurs.  

The drive from Lake Pleasant to Utica normally takes about 55 minutes.  That day it took an hour and 45 minutes.  Thankfully there were not many other people dumb enough to be driving, but there were logging trucks.  You do NOT want a logging truck behind you on SNOWY, curvy, steep mountain roads!!  I finally found a place where there was a little bit of shoulder so I could pull over and let the truck go by me.  That was a relief!!  We were going anywhere from 20 mph to 40 mph, depending on the steepness of the road and the depth of the snow cover.  The plows just couldn't keep up with the snowfall.

We were very thankful to get down the mountain safely.  Once we were about 15 miles west of Utica, the snow turned to rain and the driving got a lot easier.  We went as far as Erie, PA that day.  Since we had Cocoa with us, we needed to find a pet-friendly motel.  My sister takes her dog on many trips and recommended the LaQuinta chain, so that is where we stayed.  The thought of staying in a room where other dogs stayed was not too appealing, but hey...you do what ya gotta do!  Other than the key card system being down, requiring that we be let in our room by a staff person, it wasn't too bad.

The next day we arrived in Cleveland in plenty of time to find the right building at the clinic, find the parking and then find a restaurant.  We are learning to appreciate my iPhone at times like these.  "Ms. Siri" helped us find a Panera for lunch and find our way back to the Clinic.  (for you non-APPLE folks, "Siri" is the computer voice that gives vocal info from the phone ...sort of like an audible GPS but offers a wider range of info).

Dr. Rini did not have any clinical trials to offer us but he did have some insights on Avastin, the drug that Dan had taken for 2 years.  We had read that some people who were successfully treated with Avastin and had had to go off of it for some reason for a time; when they went back on the drug, it was no longer effective.  He said he had treated many people with Avastin and had not seen that happen.  He felt that it worked before and was probably the best course of action for right now.  He said that since it is now approved for renal cell cancer treatment, the oncologist could be more flexible in handling the possible complications that caused Dan to have to go off of it the last time and at the very least, might buy time until a new clinical trial that seems to fit his circumstances better is found.

We still have one more researcher to talk with.  We will be visiting Dr. Olencki at Ohio State's  "The James Cancer Center" on Monday.  He may or may not have a clinical trial that would be appropriate.  If he does, I'm thinking Dan may still opt to go the Avastin route for right now and see if it has the same good impact it had before, possibly saving the clinical trial for later.

He has an appointment with a new local oncologist set up for Tues. and we are  hoping he can get his treatment started sometime next week.

As always, thank you each so much for continuing to pray for us.  We still are learning about things like "trust" and "faith" and God's sovereignty and His faithfulness.  Your prayers have meant much to us, helping to carry us along the journey!!  Thank you!!  Jodee and Dan.