Great News, for a Change

Well, well, well. Just when we resign ourselves to whatever might come our way, we get good news. Great news, actually. All the tumors we are watching have regressed over the past two months! And nothing new has developed. The Torisel is working.

We know you are joining us in thanking God for his lovingkindness. This is a dose of encouragement we were badly needing. We've always known that God doesn't give us more than we could handle, but lately I've begun to question the fine print on that truth. It is only with His help, and the support and encouragement of others that we are able to handle any of this.  Thank you for remembering us, and for praying.

Love, Juli

We had the most amazing sunset this week. I took this photo from the car as we drove across the bridge going home.  It's hard not to see God's handiwork in the beauty of creation.

A Routine and the Next Step

The past couple of months we have fallen into a bit of a routine, hence the lack of updates. Our typical week is Speech Therapy on Mondays, Chemo on Wednesdays, followed by a low-key Thursday, then maybe dinner out with friends on Fridays (always a  highlight), and church on Sundays. In between, it's work for me and gardening for Bobby. He's attacking the yard like a mad man, pulling weeds & dead plants, moving rocks, adding mulch, trimming trees. Which reminds me, we're happy now that Mad Men is back on Sunday nights, temporarily replacing our Downton Abbey addiction. Bobby rides his bike most Mondays with Lloyd, his #1 fitness encourager. We usually hit the YMCA once or twice and walk the neighborhood a couple of times a week (Joey likes that). 

Bobby's managing pretty well, all things considered. He has a mouthful of canker sores, rashes in various places, and general fatigue most days. His speech is understandable, but he still has difficulty with expressing himself as he would like. And yes, that's very frustrating for him.  Monica, the speech therapist says he has "fluent apraxia" and is extremely high functioning. He knows exactly what he wants to say, and says most of it, just doesn't always get the words right. I have some recordings of his speech in the hospital in December, and it was quite eye-opening for him to listen to how far he has come.  As challenging as it is, I am so grateful to be where we are.

We have a checkup with Dr Keller tomorrow, to look at the recent CT scan and evaluate the next step.  Thankfully, the recent brain MRI showed no evidence of additional cancer, and the swelling from surgery & cyberknife is continuing to decrease. However, there was a small area of ishemia, which we are watching.  That's an area where the blood supply has been cut off, possibly during the cyberknife procedure.  It may be an explanation for some of the persistent speech issues.

Thank you for praying for the next step.  As we see it now, if the Torisel is working we will continue the weekly treatment schedule. If not, we will pursue the clinical trial in Bethesda.  But really, there's no telling what the options might be.  We've gave up trying to predict the future a long time ago, just walking by faith instead.

Juli

It's a Marathon

We were thrilled to be able to see Michael run his first marathon in Austin, TX last weekend.  He's been training with three buddies since last fall, had his share of foot and hip injuries, but pressed through to actually run it. We had no idea what to expect, since as parents we hadn't actually seen all the training, and were more than a little skeptical that he had the time and motivation to train properly.  So we packed ice packs, water bottles, cameras, signs, and all the cheerleading skills we could muster and drove the 8 hours to the state capital of Texas, to support our runner. One of about 18,000 other athletes, I might add.

Rounding the Corner at 22 miles. Looking strong!

It was crazy, and exciting to say the least.  Masses of runners clogging the streets, making it challenging to figure out our best viewing spots. But thanks to a really cool app with a tracking device and interactive map, we were able to keep up with his progress and navigate our way to 4 prime locations for viewing and cheering.

Keeping his eyes peeled.

Michael ran for 3 hours, 57 minutes, and 45 seconds, breaking his personal goal of 4 hours.  His pace was a 9:04 mile. Well done, good and faithful runner!

Proud Cheerleader

Bobby & I are in the midst of our own marathon, into our fifth year of going up against metastatic renal cell cancer.  There's been more than a couple of "walls" along the way, alone with some periods of cruising "in the zone." Some stretches we've been surrounded by lots of people almost physically lifting & pushing us along, and other times when the road is a little lonely, we just "keep the ground moving under our feet." But it's never long before a cheering friend will show up just around the corner with a drink of water, or an encouraging word. The ups and downs of this journey have been more physical for Bobby, more emotional for me. Sometimes I'm on the sidelines going "hang in there, you can do it." Other times, I'm running alongside (albeit in far worse shape) just trying to keep up.

But the race is far from over.  Bobby's newest challenge is called Torisel, an IV target therapy drug. He has treatments every Wednesday, we just finished Week 4.  The plan is to do 5 more weeks, then do scans. If it seems to be working, we'll continue until it no longer seems to be working. At that time, we are planning to pursue the clinical trial in Bethesda, assuming that's still an option.

The Torisel side effects have been pretty much as advertised. Awful mouth sores, fever blisters, lovely zit-like rash in various locations, and general fatigue, which is pretty frustrating for someone who thrives on physical activity.  He's pushed through it, though with yardwork, and a couple of bike rides. Thankfully, winter has been super mild in OK.

Speech Therapy continues, and we do our best to do an hour of homework every day. There are still some stubborn issues that make communication a challenge, but most of the time we manage.  It is every bit as frustrating as they said it would be. 

Who knows what's ahead. My hope and prayer is just that we run with endurance the race that is set before us, by laying aside all that entangles us, knowing we have a cloud of witnesses surrounding us, fixing our eyes on Jesus, the author and perfecter of our faith. (from Heb 12:1-2)

Under the CyberKnife

Just a quick update. The CyberKnife radiation procedure went well last night. They gave us a nice tour of the facility and a great explanation of the technology.  I even observed the last 1/3 of the process, which was very interesting.  Bobby had a little headache last night, and felt a little tired this morning, but nothing bad. 

He will go back under the CyberKnife again this afternoon to finish the treatment. So far, so good.

Juli

Back in the Waiting Room

After our appointment with Dr. Nguyen (pronounced "Winn"), the Radiation Oncologist, we had the impression things were going to be fast tracked. Last Thursday, Bobby was fitted for a mask, had a CT Scan "Sim", and another Brain MRI, all in preparation for a 2-3 day planning phase. Then we waited.  We finally got the call yesterday afternoon that the CyberKnife is scheduled for today at 5:00 pm. The CyberKnife is a highly concentrated beam of radiation, specifically targeting the tumor "bed," a the shell-like remains where the tumor was previously sitting.  This procedure will reduce the odds of a recurrence in the same location from 40% to 5-10%. 

Additionally, we are on track to start a new IV treatment called Timsirolimus, or Torisel, after an appointment next Wednesday with Dr Keller.  The plan is to do Torisel weekly for 8 weeks, at which time we'll do scans to measure progress. If there's regression, we'll keep doing it.  If there's progression, we will stop the Torisel for 4 weeks, and proceed to Bethseda for the NCI Clinical Trial.  He's ineligible for the trial for 3 months after radiation, and 1 month after any systemic treatment.  We are comfortable with this plan, and relieved to finally have a longer range plan.

The Concerns:

1. The laundry list of potential side effects from radiation in the left temporal lobe include nasty things like dependence on steroids due to swelling, permanent cognitive and speech issues, and even violent tendencies.  Lovely.

2. Torisel side effects include fatigue, mouth sores, hives, itching, swelling. Been there, done that.

On the positive side, we were extremely blessed today by receiving over 50 text messages from some of the pledges in Michaels fraternity.  It's Initiation Week, so I imagine the pledges are swamped with lots of unpleasant tasks, but this one was optional.  Just a sampling:

Now that's some fraternity hazing I could actually support.  Thank you to all the fine young men of the Sigma Phi Epsilon fraternity at the University of Oklahoma! You made our day.

Love, Juli