Home!

My Dad was discharged from the hospital yesterday afternoon.  Great news!  He can finally get some good sleep now that he is out of the craziness of the hospital.  We are so thankful that he is already home and doing so well.

After family dinner this evening, we talked about flowers and weeds for the week.  A huge flower for the week was the success of the surgery and the amazing healing that my Dad has experienced thus far.  We thought that he had been stellar coming out of his first surgery, but this time he was walking around earlier, pushing Ben around in a wheelchair earlier (yep, you read that right), and he was discharged from the hospital earlier.  It is so cool to see my Dad doing so well - what an amazing answer to prayer!  My Mom is also thankful that my Dad greeted her post-surgery with the words "An angel!" instead of the words he used the first time: "Who are you?"

My Dad shared tonight how neat those first words out of his mouth actually are.  He said that right before he was taken into surgery, he was thinking of things to say to my Mom and decided to say something about angels.  But he didn't actually expect that he would remember what he had planned to say in his post-surgery, post-anaesthesia state.  So the fact that he remembered what he had planned is a testament to how well my Dad has been doing post-surgery.

We ask that you continue to pray for healing, for bold courage, and for a miracle.  We also ask that you pray for strength and comfort for my parents as they "start fresh" with the healing process.  Life had gotten into a bit of a normal rhythm for them and surgery throws that upside-down, with my Dad being unable to drive, run errands, and do as much around the house as he has been doing.  So we would love for you to pray for peace and comfort for them as they adjust to a different daily routine for the next few months.

Thank you so much for all of your prayers - we feel them on a daily basis!

- Tara

Surgery II Update

This morning we arrived at the hospital at 8:30. After getting into his uniform that he'll wear the next few days (a lovely dress), we waited for a few hours before someone came to take our Dad for surgery.

Erin, Loretta, Doug, Leanne, Tara

He went in for surgery at 12:00 and we got to see him again around 5:00. Dr. Mehta, who performed the surgery, stopped by to say he was happy with how the surgery went and that he would check-in again in the morning.

Thank you for your continued support and prayers through this day. We ask again that you pray God has performed a miracle and the pathology report says that the mass is not cancerous.  We also ask you to pray alongside us that he recovers well and speedily.

Sweet toque!

Major Beast-Slaying on Wednesday

My Dad learned today that he needs to check in for surgery tomorrow, Wednesday, November 22, at 8:30 in the morning. 

Please join us in praying hard that the surgery goes ahead as scheduled, that the surgery goes extremely well, and that my Dad heals quickly and beautifully. 

We know that God performs miracles. Please also join us in praying that the tumour no longer be cancerous, or even that the tumour no longer be there!

Outrageous Bravery and Hope

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!

November 11 Update

It has been a very hard week for us!  We have gone from planning on 3 more months of chemo - with the the finish line in sight (although we never expected the beast to go that easily) to a totally new treatment plan.  We have reminded ourselves that while we fully trust and believe in God’s healing power, we need to trust in His timing.  We have had a difficult time “rebooting” ourselves as we seemingly will be starting right from the beginning again, with surgery and more chemo cycles. Another cycle through the wringer!  It was interesting for us to hear from our kids that they had no idea what Loretta was talking about when she said that I was putting us through the wringer before I get better.  They have now seen pictures of wringer washers!

The last blog post asked that you pray that we could be courageous and hopeful as we await the next treatment plan, and that the Tocagen clinical study (http://tocagen.com/) would be reopened, and that I would be deemed to be a suitable candidate.  We expected a timeline of 2-3 weeks before hearing back about the study and about my possible involvement.  Thank you for your prayers as we had a meeting this past Friday with the head of the study in Edmonton. The study has been opened again, much sooner than expected and the doctor thinks that I would meet the study criteria - tall, dark, and handsome!  The trial involves an initial surgery to remove the tumour, which is much smaller than the initial one, and then the injection of a virus into the tumour that can’t be resected. From there it goes Star Wars-science as the Tocagen treatment seeks out the virus and interacts with it to create smart chemo (only 50% of the study participants receive the tocagen drug) that will attack only the GBM in the brain.  Many of you fine friends have suggested that I can ill afford to be losing brain cells! We have decided to take part in the clinical study, if I get accepted.

We sense strongly that God is directing us in this direction. This will likely mean a surgery in November.  It amazes us on a daily basis how God is directing us through this beastly fight, with prayer, support and all kinds of small miracles and Godly fingerprints.  We have the following prayer requests for the next steps (this always seems a bit unnecessary/weird to be so specific when we trust that GOD knows His plan and OUR needs; yet we know that God also invites us to pray with passion and purpose):

Pray that we continue to trust God on this journey and that we move from “can we do it again?" to “we can do it again”.

Pray for God’s continued presence in our life, giving us daily strength and courage.

Pray that the surgery will go well.

Pray that I will qualify for the clinical study and then that I will receive the Tocagen medication.

We will 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.

Courage and Comfort

This past week God directed me to this song - Comfort My People - from one of my favourite musicians, Steve Bell.

The lyrics remind me of the powers of God - He seems to be nudging and reminding me:

Doug, do you not know, have you not heard, have you not understood... that I can do this and will provide all that you need!!

I also see God’s creative hand in the Tocagen treatment as well.

Comfort My People

Do you know

Have you not heard

Has it been told you from the first

Have you not understood

From the forming of the earth

He sits enthroned

Above the world

And sets the heavens like a tent

A place for us to live in

A place for all to live

Who has measured the waters

In the hollow of His hands

Do you know

Who has marked off the heavens

With the breath of His word

Do you know

Comfort my people

Comfort my people

Says the Lord

He brought out

The starry host

One by one He called them by name

Why do you still complain

That He doesn’t know your ways

Lift your eyes

And look to see

Who created all of these

And never more complain

That He doesn’t know your ways

If you’d like to listen to the song, you can find it on SoundCloud here.

MRI Update

We met with the oncologist today and learned that the most recent MRI showed that there continues to be some change and that the tumour is growing.  The oncologist believes the tumour is operable, so my Dad will be preparing for surgery within the next month.  After surgery, he will switch to a different form of chemotherapy that will hopefully be more successful at destroying the cancer cells.  My Mom told my Dad that he is sure putting us through the wringer before he gets better!

The oncologist told us about a clinical trial that should be restarting in Edmonton within the next couple of weeks.  This trial also involves surgery but the chemotherapy is delivered differently.  So far, it sounds like the results of the trial have been very promising so we are praying that the trial gets running soon and that my Dad is eligible for the trial.

As another example of how God continues to walk with us on this journey, today assured us again that He has blessed us with an attentive and proactive oncologist. Originally, my Dad wasn't scheduled for another MRI until this month but he had to have an MRI in September before his seventh round of chemo.  That MRI showed some change but as mentioned in a previous blog post, we weren't sure if that change was due to growth or radiation scarring.  The surgeon and the radiologist both thought that my Dad should wait another two months for an MRI but my Dad's oncologist wanted another MRI done in one month.  Knowing about the tumour growth as early as possible will mean a less invasive surgery.

We ask that you pray for courage and hope as we prepare for another surgery and a change in chemotherapy.  And we ask that you also pray that the trial gets restarted as soon as possible and that my Dad gets accepted into the trial.

I think that my Dad summed it up pretty well in a text he sent out today: "We knew going in that the beast was going to be a beast!  It is!  But the beast can be defeated by our healing God."    

- Tara