Please pray for outrageous bravery and hope.
Meanings of the word “outrageous” - excessive or shockingly bad? How about bold, unusual or startling?
It has been another very hard week for us! We have been busy praying about and pursuing next steps. This is exhausting. We research options and talk with “experts” but usually hear things that are discouraging or offer little hope. There aren't really any treatment plans that have had any long-term success. This makes figuring out next steps difficult. So we pray for a healing miracle, that the beast may be slain, and for guidance, that God will make the path through this maze clear.
In the last blog we asked that you focus your prayers on the Tocagen clinical trial - that it would be reopened, that I would meet the participant criteria and that God’s guidance would be clear! They had initially suggested that it would be 2 - 3 weeks before we would hear anything about the trial. It was closed at the time and needed FDA approval in the USA before it could reopen. The local ethics committee also needed to approve the change to the trial for it to be reopened in Edmonton. Within 48 hours of our request for your prayers we were invited to a meeting with the head of the trial in Edmonton. We were then told that the trial had been reopened, far sooner than expected. We thanked God for this answer to our prayers and the clear direction! About 12 hours later Loretta and I had another 2 hour meeting to sign consent forms for the study - just over 20 pages of requirements and possible side effects, including permanent hair loss. We had a family meeting that night to update the kids on the consent form meeting. Everyone agreed that we should move forward with the trial based on a clear sense that God was making this path clear. Again, an answer to prayers, or so we thought.
I was sent for another MRI to confirm that the tumour was still less than 5 cm in size, one of the participant criteria for the trial. As usual, I used my 45 minutes of MRI time to sing a few praise songs and to do some praying. I wonder what the technicians think when they hear my stellar voice mixing with the bangs and clangs of the MRI magnets. I am guessing that they turn down the communication microphone and scramble for extra earplugs and headphones like the ones that they supply me for the cacophony symphony of the MRI experience. Poor folks - people like me are a bit of a job safety hazard. Strangely, I do not seem to get the same technicians very often; probably just a scheduling coincidence or perhaps my MRI sessions are being swapped for Christmas day shifts? I thanked God for how He had seemingly moved mountains (the FDA!!) on my behalf to gain entry into the Tocagen trial! After signing a few post-MRI concert autographs I met with my neuro-surgeon to review my MRI results. It had seemed so clear that God was moving mountains on our behalf with the trial being opened well-ahead of schedule and our prayers being answered so clearly and quickly. It felt like a real punch in the gut when the new MRI revealed that the tumour was now just a couple of hairs wider than the 5 cm maximum.
Tara’s response to this unexpected news shows how we’ve tried to walk through this together in a faithful manner:
“I think it's just a bummer that it seemed like Tocagen was what we should have been doing for awhile. It is hard when it seems like God is leading us down a path but then it doesn't pan out. It would have been easier if we knew that Dad wasn't a candidate from the beginning. But I do trust that God is in control and that Dad not getting into the trial is a God-thing. Although it seems crazy that Dad didn't get in by .06, that is such a small margin that if Dad had a MRI a few days ago, he probably would have been under 5 and been accepted. So I am seeing Dad being JUST over on this specific day as a sign that Tocagen isn't the answer for Dad and God has other plans. I don't feel discouraged at all by this change of plans. I am just bummed because it must be very hard on Dad and Mom to have a plan not work out.”
So now we pray for wisdom and courage and clarity and trust, that we don’t lose our faith and our ability to follow and see God’s leading. This has shaken me a bit as I was so sure that this was God’s plan - how could I have been so wrong? But this has also been a faith-building event as we can so clearly see God’s will being done in this story sequence. We look forward to discovering God’s will and guidance as He reveals the next page (His next page) of our story clearly in the near future as we consider other treatment options.
I have been scheduled for another surgery on Wednesday, so please pray that it proceeds as scheduled and that the surgery goes well and that the healing also be blessed! Unfortunately we won’t find out the actual time until sometime on Tuesday and we will post that here. We ask that, if you are able, you join us in prayer at that time.
We are so thankful for the large and powerful group of prayers on our side!. We feel your love and care in a very powerful way!
We have a number of treatment option/decisions ahead - please pray for God’s clear hand of direction and guidance and for us to listen carefully.
Steve Bell’s album, Solace for Seasons of Sufferings, has been a real gift in the past week - especially the following song.
“Remember me” Prayer
To You oh Lord do I lift up my soul
You are the only course that I know
When shame denies me a place in Your fold
In Your love remember me
Show me Your road with respect to the truth
Hold not against me the sins of my youth
There's no one to turn to if You don't come through
In Your love remember me
In Your love remember me
In Your love remember me
All because of Your goodness Lord
In Your love remember me
Yahweh confides in the ones who have faith
Shares from the secrets of old so they say
Dare I presume You would treat me the same
In Your love remember me
In Your love remember me
In Your love remember me
All because of Your goodness Lord
In Your love remember me
Show me Your favour Yahweh
Let it never be said that I've trusted in vain
It is Your reputation that makes me outrageously brave
And hold out your mercy to me
Go ahead and correct me for the sake of Your name
It's not much of a thread but my hoping is keeping me sane
Again and again.
In Your love remember me
In Your love remember me
All because of Your goodness Lord
In Your love remember me
If you’d like to listen to the song, you can find the SoundCloud link here.
My favourite lines from the song:
-“It's not much of a thread but my hoping is keeping me sane.”
-”It is your reputation that makes me outrageously brave!”
Please pray that each day God will gift us to be outrageously brave and hopeful.
Tomorrow marks the first anniversary of the beast’s arrival - hard to believe that 12 months have passed. Here’s the tough question - how do you celebrate/acknowledge an anniversary of such an event? I think we will do so at family dinner tomorrow with a sharing of some flowers and weeds of the past year, followed by a prayer of thanks for how God has been so near throughout the ordeal and a deep cry that the thread of hope be strengthened!
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