BACK AT IT

Dear Friends and Family,

The last entry here was at the end of Sept. b/c that was after Dan had his scans done. And since that time, no news has meant "good news". We had a wonderful fall and early winter which included: 3 weekends of training (Christian Discipleship and Counseling) at Grace Fellowship Church in Florence, KY, a wonderful Thanksgiving with the McCabe/Morris clans, celebrating our grandson, Matthew's, birthday and my birthday, a week-long visit to Mom's in Pompano Beach Florida in early Dec. and a truly wonderful family Christmas. We have so much to be thankful for.

Our Thanksgiving Centerpiece

Mom, waiting for the start of the John Knox Village Christmas Parade

Matthew at the Birthday Party he shared with two classmates.

Birthday Cookies for Matthew's class.

Christmas afternoon at Mimi and PopPop's house.

But all of that transpired over a 4 month span of time and since he is scheduled for a CT scan and a bone scan every 4 months, Jan. meant that it was time for the next round of tests. Yesterday was the day and he went into Jewish Hospital for both procedures.

Always before, he has waited and gotten a copy of the digital and written reports before leaving the hospital. (We learned early on that keeping our own records was highly advisable!) But yesterday, for some reason, they "could not" provide him with the written report of the CT scan.

Dan didn't think much about that, but I was wondering if that was because they were getting a second opinion on a questionable area. As a nurse, these kinds of questions tend to surface fairly quickly. A question that probably should have come to mind was, "Are they not giving him the report b/c there is bad news in it?"

So we had to wait until today for the results.

On the positive side, Dan looks great and has been feeling really well. We both have been working out at the gym to try to prepare ourselves for skiing (in less than 2 weeks from today!) and he definitely is gaining muscle strength and is back to a healthy weight. So life has been very good lately.

As you have already deduced, the news at the doctor's was not so positive. After the last scans in Sept. there was some question about an area on his 10th rib on the right side. The changes seemed minute and could possibly be the result of a different angle or a different radiologist's interpretation. We, of course, were hoping that was the case. The results this time, however, were not as ambiguous, and show some progression in that same area. There were no new areas of disease detected and for that, we are very grateful.

There isn't much available that is left to use in the chemo arsenal that is effective against renal cell cancer. So the first line of attack for right now is to possibly use radiation on that area and to add an intravenous medication that helps the bone fight against (slightly) or "inhibit" further metastasis and prevent against calcium loss.

We have an appt. for next Thursday with the radiologist to get his input and an appt. in two weeks with the oncologist to most likely begin the intravenous treatment. That drug will be given every 6 weeks.

I'm not sure either of us has fully processed this turn of events, but we know that we are trusting the same God who has been with us through all of it and who

has His Glory and our eternal good as priority #1. While life is still full of twists and turns, we know there is ultimate (eternal) safety in His plan for us.

Thank you for continuing to pray for us as we move forward.

Jodee and Dan

ANOTHER MRI

Written by Jodee McCabe    

Sunday, 04 January 2009  4:25 PM

It has been quite awhile since you have heard from us.  We survived December although we did not get to take our trip with our whole family to New York.  Our kids had worked hard to arrange for all of us to be able to spend Christmas together at our cabin.  Karla's family celebrated their Christmas a week early so that we could have them for both Christmas Eve and Christmas Day (THANK YOU!!)   But......the weather on our east/west route of I-90 became too unpredictable for our kids who had limited windows of opportunity to get to and from N.Y. and so rather than becoming separated or spending Christmas worrying about the weather, we chose to stay in OH.  We had a wonderful Christmas Eve and Day all together and made many lovely memories.  Yes, we were disappointed to not be able to play in the snow and not to be able to visit our good friends in NY, but we are continually reminded of all of the blessings we have even in the midst of disappointment.

It was so much fun to have the kids and grandkids home for some of the Christmas preparations!  Meg is helping Morgan decorate the cookies.

Megan guided the construction and decorating of their own Gingerbread House.

Looks pretty awesome, if you ask me!!

Part of the fun is cleaning up.

Meg and Morgan work on a surprise for PopPop...a NOTRE DAME blanket!!

Finally!  Christmas Eve!!

Somebody got a fireman's hat.  Wonder who that was from?

It was such a treat to have them here on Christmas Morning!!  And look what Santa brought Morgan!

We are so grateful for this special Christmas together.  It was tempered a bit by our not being able to have our dream of being at the cabin and by not being able to say good-bye to our dear friend in NY who passed away on Dec. 23, but it was so wonderful to have that time together....all together for Christmas.  We are very, very grateful.

Now the holidays are over, the tree is down, the decorations are put away and it is time for more medical appts.  If you remember, Dan completed one last round of Sutent, his oral chemo, right before Christmas, just to give him the best possible chance to NOT have more brain tumors form before the next MRI.  That last round was pretty tough.  All of his side effects were worse than before and for the first time, he experienced quite a bit of nausea and GI discomfort.  We were attributing that to the chemo.  But now that he has been off chemo for 2 weeks and still has some GI symptoms, we are not so sure. Perhaps, just as the side effects were stronger, it will take longer for the side effects to completely go away.

Even though he was very uncomfortable through that last round, he stuck it out and completed it.  Now at least we know he did everything he could do.

Tomorrow early in the morning we go in for his high def MRI to see the results of the stereotactic radiographic surgery he had done 8 weeks ago and to see if there are any new tumors.  We are praying that no new tumors would be there and that the results from the SRS would be better than before, if that is possible.

If there are no new tumors and the other tumors have been adequately diminished he will begin an IV administered chemotherapy.  We do not know if it will be as part of a clinical trial or not. Results of the SRS and also negotiations with our medical insurance are pending.  Please pray for the best solution to be worked out, both medically and financially.

If we only looked at our future in terms of medicine and man's knowledge, we would be quite discouraged.  But as many of you remind us and as we read in Scripture, our present and our future is in God's hands.  Dan has already passed by the prognosis of 3 to 6 months and most people would not be able to tell, by looking at him, that he is not well.  Some days it is even hard for us to believe. We are grateful for each day.

Please pray for us to be able to sense God's presence with us tomorrow as we learn just where Dan is: the results of the SRS and whether or not there is any new growth of the disease in his brain.  Please pray that the knowledge of His presence will not only give us peace in all circumstances but that it would shine through us to those around us, offering hope to the hopeless.

Thank you once again for being on our "team" and literally holding us in prayer.  We will let you know what the docs say tomorrow.

STEREOTACTIC RADIOGRAPHIC PROCEDURE

Written by Jodee McCabe    

Thursday, 20 November 2008   6:15 AM

This last week or so has been pretty busy.  Last Friday Dan had a CT scan (yes, another one) and then Monday he had a high definition MRI to prepare for another stereotactic radiographic procedure.

Later this morning, Dan will have that procedure on his brain.  The first one back in July, treated 3 tumors successfully.  Today they will be zapping two small tumors, one on each side.  The docs say these are small enough that Dan doesn't need to be on the anti seizure meds.  We are very relieved about that b/c they made him feel terrible and pretty much killed his appetite.

The mask that was used the first time to stabilize his head just needed some minor adjustments so they did that last Friday and used it to position his head for the CT scan and will be able to reuse it today.

He needs to wait for 8 weeks after this procedure and then have another MRI to check those tumors.  IF they are gone and no other tumors have formed, then he might be able to begin the clinical study for AVASTIN.  In the meantime, he will do one more round of Sutent.  Even though it has not been effective enough, we are hoping that it will still minimize the progression of the disease while we wait to be enrolled in this clinical study.  He will be off the drug for nearly 4 weeks prior to beginning that new study.

His pain has increased somewhat.  It is mostly in his lower back but he also has some in his shoulder and upper back.  He has increased his pain med slightly by taking it in slightly shorter intervals.

Please pray for his own body to begin to figure out how to fight off the disease.  All the chemo drugs can offer is a little more time for that to happen.

Please pray for me as well.  Last night I developed a sudden sore throat.  I'm gonna try to see the doc late this afternoon.

Our first thought is always of healing.  But we know from reading Scripture and from listening to wonderful teaching and from hearing other life stories, that while God often displays His power and glory through healing, there is so much more to learn about Him, and about us,  through these trials.  We don't want to miss any of it.

Thank you to each of you for your continued prayers for us.  It is difficult to explain all that it means to us but as we gather with our family around the Thanksgiving Table, be sure that we will be thinking of each one of you as we thank God for all of His Blessings.

SECOND MRI RESULTS

Written by Jodee McCabe    

Tuesday, 11 November 2008 10:45 AM

Yesterday was our visit to the oncologist to get the results of the MRI of the brain.  We were told that there are two new lesions in Dan's brain, one on each side and both are small.  This kicks him out of the clinical trial for now.  We were very disappointed but not surprised.  It seemed logical to us based on the results of the CT scan, which had shown that in other parts of his body, while some tumors disappeared, other, new tumors had formed.

We are staying at home this morning waiting for the radiologist to call to discuss further "options". We are hoping that he will agree to repeat the procedure that Dan had early this summer (stereo-tactic radiographic surgery) to remove the new growths in his brain so that we can continue with chemotherapy.  The current drug is not effective enough and we hope to get him included in a clinical trial once the new brain lesions are dealt with.

Some of you have written and reminded us that we are not limited to the discouraging news of the doctors, however accurate it is, and to keep our minds and hearts centered on God's Word, which is full of life and hope.  We are well aware that that hope is in being a part of Christ's Body for eternity; not in an endless life here.  But it does include an "abundant life" here, which we understand to mean that God will provide what we need to endure for now as we prepare for eternity.

Our children/grandchildren have been very attentive and friends have been doing all they can to support and encourage.  How blessed we are!  As Thanksgiving approaches, we have more than ever to be thankful and grateful for.  Each one of you is high on the list!  

NEXT STEPS

Written by Jodee McCabe    

Sunday, 02 November 2008 1:00 PM

Well, it has been an eventful week and yet little has been accomplished; or at least it feels like that.  Eventually, as I related in the last update, the oncologist did get the full report from the radiologist re: the CT Scan.  The results show that the Sutent is not adequately fighting off the cancer.  The doctor called twice last week to fill us in on the situation.  He explained that we needed to keep the appt. on Friday (i.e., not move it earlier)  b/c he wanted to consult with Dr. Logan, from I.U. Medical Center and he needed that time to be sure they could connect.  We were glad he was not SENDING us.  On Thurs. he called again to tell us that Dr. Logan had no other treatment options  to offer than when we spoke with him in June.  

Our oncologist had been made aware of two new studies that were using a drug called "Avastin".  One study was using Avastin in conjunction with another chemo drug and the second study only used Avastin.  He said Dan would need another MRI of his brain before he qualified for either study.  If there are new brain lesions, he would not be able to participate.  He felt there was no need to see him again until after the MRI was done but suggested we come in on Friday to speak to the research nurse who would inform us about the two studies so we could read the information carefully and have time to consider them before we had to make a decision

When we got to the appt. on Friday, one of the studies had already been closed out.  Some  folks would be disappointed but we are understanding this as an answer to your prayers for us: to keep our paths for treatment clear.  So now we wait some more.

Friday, the MRI will be done.  Tues. we will see the oncologist and talk about results and our options, if any.  IF the brain scan is clear, Wed. Dan will go for a bone scan.  That is for the benefit of the study (if he is eligible) so they will have a clear record of the starting point.  Also, if he qualifies for this study, he will discontinue the Sutent he is now taking and then wait for two weeks before beginning the new treatment.  This new drug will be administered IV once every other week.  After some time, results will be evaluated.  IF he is one of the few who is showing good response, those people will be randomly divided.  Some will be treated every week and others will remain with the once every OTHER week dosage.  In both cases the dosage is higher than previously used.  If you read the list of possible "side effects", you'd be worried.

In the meantime, Dan's pain has migrated from his flank down to his sacrum.  He has pretty much been on pain meds around the clock.  There are other areas that hurt but that is the major one.

It is very possible that Dan will not qualify for this study or that by the time we comply with all the tests, that it will be filled as well.  Even knowing that, it is hard to adequately prepare to HEAR it.  We though we were prepared for the results of the CT scan but discovered it is very hard to corral emotions.

Although the MRI will be done on Friday, we do not anticipate knowing anything until next Tues. (Nov. 11).  Although the wait seems long, I cannot imagine dealing with socialized medicine where you wait for months for diagnostic tests.  We are praying about that issue as well.

We also have increasing concerns about Dan's brother, David.  He has been having fainting spells at work and they have discovered his blood pressure is very low.  They took him off a medication he had been getting for Down's Dementia but that did not help his blood pressure go up to normal range.  They tried using a halter monitor to check his heart function, but he ended up breaking it.  We are guessing it will not be very long before we need to place him in a nursing home.  We are praying that God will grant David mercy and allow him to remain in the group home and sheltered workshop until the end of his days.

Please continue to pray for wisdom for the medical people; for wisdom/ discernment for us as we make decisions regarding their recommendations for both David and for Dan; and for that "Peace  that Passes Understanding" that flows out of total trust in our Savior and King, Jesus, and ALL that He has for us in this life and the next.

CT RESULTS (?)

Written by Jodee McCabe    

Monday, 27 October 2008  8:30 PM

An update that isn't an update?  Well, it is sort of like a doctors' appt. that isn't a doctor's appt.   Yesterday we showed up at the oncologist's office.  After waiting for 45 minutes past our appt., we were ushered into the room to be told that there had been miscommunication with the radiologist's office and they needed the written report for the previous scan before they could complete their report.  What was missing was his/her comments on the liver, which, apparently, is more important than other organs in the oncologist's evaluation of the progression or non-progression of the cancer.  Apparently, what the nurse had received and passed on to us last Thurs. was an unofficial summary, not the OFFICIAL report and the radiologist did not want to offer that until he/she compared it to the first report.

There was a date on the bottom of the CD of the original CT Scan which denoted when the CD was copied and given to us.  HOWEVER, the date of the actual test was in the CT Study info on the TOP of the CD.  Unfortunately, the date at the bottom was bold in print and that is all the person who was requesting the written report looked at.  The oncology office had no "June 19" CT report so they were at a standstill.  We left the doctor's office needing to DRIVE to the other office, give them our copy of the RIGHT report (we still had not figured out the whole problem yet),  WAIT for them to complete the report and then hand carry it back to the oncologist's office.  They made an appt. for Friday to replace yesterday's appt.  

While we were sitting for 2 hours at the radiologist's (we were led to believe that the time would be much shorter or else I would have driven the 12 miles again later) I was thinking we should push to be worked in to the oncologist's office earlier...either later yesterday or maybe today.  When we returned with the full report, the nurse said there was no way for yesterday (he was already way behind, as we had witnessed by our 45 min. late appt. earlier).  But she would see about an appt. earlier than Friday and call us.

After 5 hours, minus 45 min. for lunch, in doctors' offices, we were pretty tired when we got home.  Not much got accomplished yesterday.  We left for dinner with friends at about 6 p.m. not having heard from the oncology nurse.   When we returned a couple of hours later, we had a message from both the nurse and the oncologist on the phone machine:

The liver results were similar to other areas:  some lesions were gone, others were new.  There was some mention of adding a new drug to the mix (new to Renal Cell cancer, but has been used for quite awhile for colo-rectal, breast and lung cancers) which would need to be IV injected every other week.  Our oncologist wanted to consult with Dr. Logan at IU Medical and so he wanted us to wait till Friday so Dr. Logan would have a chance to get back to him.

SO....we continue to wait.  The behavior of the cancer makes no sense to us but I'm sure that is part of why the researchers are having so much difficulty in figuring out how to treat it effectively.  It is sort of like shooting at a moving target.

This change of plans and the possibility of needing to be here for IV infusions has put our plans to visit my mom, in Florida, on hold for the moment.

The waiting is hard.  Please pray for our minds and hearts to be focused on God and HIS plan for us, over and above all the medical issues and decisions (It may be time for us to re-read, "Don't Waste Your Cancer" again) while still thoughtfully and prayerfully giving wise thought to our next steps.

Thanks for waiting and praying with us,

CT SCAN UPDATE

Written by Jodee McCabe    

Wednesday, 22 October 2008 4:35 PM

While I was out with a friend this afternoon, the oncology nurse called to give Dan the results of his CT scan from Tues.  The news was not good.  While some spots on the original CT scan seem to have disappeared, there are several new "spots".    We don't fully understand what it means but the bottom line is that the disease is progressing.  I don't want to guess at the ramifications of this (well, we both have, but we will try to not dwell on our imaginings) until we speak with the doctor.  He would have called today but is on vacation this week.  We have an appt. to see him early Monday morning.

With Dan feeling as well as he has, we have been fairly hopeful and this news has been a rough bump in the road.  Please keep praying for extra measures of faith, comfort, strength and peace as we look to Abba Father for sustaining grace.