Wednesday, 9 May 2018

Heaven's Ninjas

We met with Dr. Easaw, our main oncologist, last week Thursday morning. He relayed that the radiologist said there was a “minimal change” in the MRI from the March scan.  So he was pleased, although no change is still what we long for and pray for. But he is very happy with how “remarkably well” the brain is healing and that there are few side effects. Dr. Easaw had sent the scans to the surgeon, Dr. Mehta, to see what his opinion was. Dr. Easaw thought that surgery was unlikely but a change of chemo was possible. We met with Dr. Mehta yesterday morning and he agreed that the change is minimal so we are officially out of the surgery lane and going to try a switch up with the chemo!
Prayer requests:
  • That our planning around Mexico Part 2 becomes clear to us and that planning all those details works out!
  • The extended Monsma family from the Edmonton area is participating in the Edmonton Brain Tumour Walk on May 26.  If you would like to support us (or better yet, join us!), click on the link below and put your dollars on Heaven's Ninjas. Thanks! http://www.braintumourevents.ca/site/TR?fr_id=1518&pg=entry

Friday, 27 April 2018

Hope Springs Eternal Every Spring - Right?

Spring feels different this year.  Loretta described it as feeling tainted.  As I ran errands today, I noticed a lot of folks out and about in shorts.  Wearing shorts is still a real danger for me and the folks in my general vicinity as the waist sizes for most of my shorts haven't been upgraded yet to reflect my loss of 25 pounds.  What could go wrong you might ask? While washing a car a few weeks ago, my pants slowly began to slide down my butt. Then they proceeded to do a super slow slide down my legs, before finally stopping at my knees.  If you shake your head vigorously you might knock that nasty image out! Thankfully there were only about 5 other washbays occupied at the time, but I still did get one slightly sarcastic whistle. This was all still a tad embarrassing, especially with my now scrawny legs and bony butt. At least I was wearing my new superhero undies!
An hour long church service now officially requires a pillow for my aforementioned bony butt!  My old butt used to take about 5 minutes to follow me around a corner. Plus it provided the added security of my pants staying up at my waist while doing physical activities.  I’m now fearful of walking down the aisle at church and having my new superhero undies suddenly exposed like at the car wash!

The beast continues to be a fearsome opponent and taxes our reserves, which are drawing lower and lower daily (I needed at least one tax season pun, especially for Loretta as she also fights the tax season beast with its deadlines and 70 hour work weeks, all the while trying to find a way to co-exist with her suddenly more eccentric spouse. Although I will point out that the possibility of a brief superhero undie sighting is certainly a fringe benefit!)

While we have been back from our Mexico treatment trip for weeks, we are still trying to fully recover from the treatment onslaught and food poisoning that we picked up on the way back. My ongoing daily treatment regimen is also rigorous, involving up to 60 nutriceuticals each day. Add this to the ongoing chemo, and this spring does certainly feel tainted and a bit bleak.  It is also now time for us to imagine our next round in Mexico, perhaps in early June.

We are also gearing up for our next round of hide and seek with the cancer with another MRI this week, and results next week. We will pray that the results deliver the answer to our prayers for a complete healing miracle - surprise, no more tumor. Go ninjas!

Prayer requests for the week ahead:
  • That the time between the MRI and the results meeting will pass quickly and peacefully.
  • That the Mexico treatments flourish - go ninjas again!
  • That our plans for a couple of small spring getaways for the two of us come together nicely. Some time away from the intensity of daily life, which is exhausting, would be a real gift for both both of us, but especially Loretta.

We are blessed on a daily basis to celebrate  and laugh along with the hijinks of our grandsons and the light-hearted nature of their parents, which is such a blessing to the kids and our family.

Saturday, 31 March 2018

Daring to Dream Again!

Easter is so much about daring to dream again:  “If you have faith, it will happen.” Matthew 21:21

“...God always rejoices when we dare to dream.  In fact, we are much like God when we dream. The Master exults in newness....He wrote the book on making the impossible possible.”  And the Angels Were Silent - Max Lucado

The last blog mentioned that our chief oncologist was planning to consult with our surgeon around the latest MRI that showed some thickening around the edge of the tumour that might necessitate another surgery in the next number of weeks - not an exciting option at all. This news was also very discouraging. The trip and treatment had filled us with new hope. However, another surgery and the medications would wipe out any benefit of our trip. This idea took us to our deepest place since the original diagnosis.  It’s also scary when such immediate action seems to need to take place. We were beaten up, discouraged and left wondering if we might dare to dream again.

We met with the surgeon, Dr. Mehta, this past week and were encouraged when he suggested an alternative treatment plan to us.  His review of the MRI and my present condition was that things seemed quite stable and he recommended that we stop the surgery conversation at this time and instead take another MRI in 2- 3 weeks time. This would give the Mexico treatments time to settle in to see if perhaps the thickening around the edges might indeed be connected to the Oasis of Hope treatments working.  He also recommended that we stick with the existing chemo treatment plan as it seemed to be working based on the many dead cancer cells found during the last surgery! It was wonderful news that, after the demands of the Mexico trip followed up by the harsh initial assessment of the first MRI meeting, this meeting was filled with more hope and “Let’s not overreact at this time”.

We dare to dream again!

The trip to Dr. Mehta also involved a head exam on grandson Arie!  He accompanied us and as the nurse brought us to the room, she asked if Dr. Mehta had seen Arie yet.  She then warned us that the doctor would check out the baby’s head. Sure enough, Dr. Mehta walked into the room, immediately asked how old the baby was, and began to feel Arie’s head! Arie has a nice round head and a good forehead! It was a great way to start the visit!

Additional good news is that the chief oncologist is now fully supportive of the new treatment plan, with another MRI in a few weeks to get a better sense of what is happening around the original tumour site and waiting until then to decide on next steps.  It is always reassuring when your two chief medical advisors agree with each other, especially when you like the plan that they are recommending. This new process also gives us a chance to breathe for a bit, get settled back into post-Mexico life and treatments (which I started this past Tuesday - go ninjas go!!!) and allow Loretta to finish up tax season before the next round of treatments!  And for both of us to get up off of the canvas after feeling like we had spent 10 rounds with Mike Tyson. We are both pretty beat up, physically, emotionally and spiritually. We were both so very confident that God directed us to the Oasis of Hope and have been trying so hard to be trusting with how God has guided us through this beastly journey, including the three weeks in Mexico and the truly beastly day of travel on the way home. We are both just now finally getting over the food poisoning that we got in Palm Springs and beginning to recover some of our emotional resilience. This new treatment plan has us daring to dream again!

Prayer requests:

  • We had asked people to pray that surgery would not be needed at this time, and that the doctors would be in agreement so we wouldn't need to be making any more challenging decisions about the type of treatment we should pursue at this time, as we simply did not have the energy to do so.  We are very thankful that the path seems clearer for the next few weeks! Time for some healing to take place!
  • Thanks be to God for that gift and we pray that the present course of action leads to good healing and that the Oasis of Hope treatment plan and processes are part of God’s healing plan for us! 
  • Please pray that the treatments are well-tolerated by my body as they are implemented over the next 4 weeks, with a new weekly plan being added a week at a time, pending my toleration of the previous cycle.  Pray for good health and high toleration!
  • Please also pray for strength and courage for Loretta and our family as we fight the beast.  Exhausting work fighting a nasty adversary! But we make a strong team!
  • Thanks for the beautiful timing of the Easter story for this tough week we are just finishing up!  New hope and daring to dream again are key messages!

Friday, 23 March 2018

MRI Update

Tough day at the office!

The latest MRI showed a slight thickening along the bottom of the tumour.  Our head oncologist, Dr. Easaw, is consulting with our surgeon, Dr. Mehta, about whether another surgery should be scheduled. He said 98% of the tumour is stable and that the thickening could be new growth, accumulation of dead cancer cells, or related to the Mexico treatment.  It’s just very unfortunate that there's no way to know without surgery.

While this was not the news that we wanted yesterday morning, the imprecise nature of the MRI makes any definitive answer/interpretation somewhat gray in nature.  Unfortunately surgery is the only way to know for sure. Our last surgery brought positive news but we would certainly love to avoid another surgery. Option B would be a switch in chemo.  Please pray for clarity for the doctors as they review the MRI with each other and pray that the treatment option they recommend is a change in chemo. Although, even that is fraught with uncertainty.  Before the last surgery, the oncologist thought we should change up the chemo because “it wasn’t working”. But after surgery they realized that half of what was removed was dead cancer cells. So the oncologist decided that the chemo was working and we should stay the course.  Without a third surgery, how are we to know what is working and isn’t? Too much uncertainty! Too exhausting! Please pray for us as we will now be needing to make challenging treatment decisions.

Wednesday, 21 March 2018

Ninjas Are Home

Ninjas are back home in Edmonton, but don’t like the weather!

After 3 weeks in Mexico for treatment, both Loretta and I were super excited to head home. We managed to get the Ninja clan across the US Border and over to Palm Springs. Our last hurdle was just the 3.5 hour flight from Palm Springs to Edmonton, but a food poisoning incident in Palm Springs the evening before departure made for a long and terrible travel day. Between bouts of vomiting for most of the evening and numerous diarrhea episodes at the airport, it was a minor miracle that we we made it through the flight quite painlessly. While we had both hoped to get back to normal routines upon arriving home, we have both struggled to regain full health as the bug lingers. I was told to expect up to 3 weeks of recovery time as the Ninjas reproduce, but I hadn’t expected to feel this listless. I guess losing 8-10 pounds in a week will knock you back a bit.

While the whole trip was a challenging ordeal with treatment and travel, we are still convinced that God directed us to the Oasis of Hope and that the treatments and things we learned there will be part of God's healing plan for us. It was very affirming for us that the doctors there were very supportive and encouraging of the alternative treatments that we initiated here on our own and were very surprised and encouraged by my present level of health.

We were also reminded of the the gift that our chief oncologist, Dr.Easaw, has been, as he has supported our Mexico trip and the alternatives that we have wanted to try. We found out that most North American patients at the Oasis were disowned by their local oncologist by going to the Oasis. In other cases, they were there without the knowledge of their oncologist. My oncologist actually reviewed my treatment plan from the Oasis, gave me feedback on it and promised that he would continue to support my treatment here upon return. When I expressed my thanks to him for this, his reply was simple: “Doug, until all of my patients get better, I had better be open to other treatments and therapies.” We thank God regularly for placing Dr. Easaw into our lives as he has been a sign of God’s direction and leading in my healing! Another armed angel!

So what’s next?
  • 3 weeks of laying low and letting the Ninjas proliferate and get nasty and then turn them loose on the cancer. We had a family dinner celebration on Friday night after arriving home on Thursday. I was very pleased to see that the family had conspired to print up "Slay the Beast" Ninja t-shirts to celebrate the occasion. What a great surprise and I look forward to wearing mine for decades, with the family, on the annual celebration of beating the beast! 
    I am guessing that I will need to upgrade in size in a year or 2 as I hope to gain back some of the 35+ pounds that I have lost! One of the grandsons will likely be moving into my existing shirt by that time!
  • Ongoing MRI’s to monitor the tumour/brain. I had a welcome-back MRI 2 days after arriving home and we have the follow-up meeting on Thursday at 10:00 MST, so if you recall or have time, set an alarm and join us in prayer for a positive report. I’m still praying that this will be the “No more tumour” MRI!! These meetings are still nerve wracking so please pray for a good rest on Wednesday night.
  • Pray for strength and courage for our family as we continue to try to find the energy to fight the beast! We came home very inspired and awed by fellow patients from the Oasis of Hope who have battled and remain hopeful after years of beast-fighting. God does provide!
  • A likely return to Oasis in early June, for booster Ninja vaccines, along with the repetition of their other alternative therapies and treatments. A likely stay of 7-10 days! More beach time in Tijuana! And also a chance to reunite with friends made during our initial visit.
  • We were also blessed to celebrate the baptism this past Sunday of our newest grandson, Arie Jan! What a blessing those special days are for me and our family now. Thank you God. Bad news: with the loss of weight and a now bony butt, I needed to use a pillow to make it through the service, provided by a friendly senior from the church!
  • Lesson learned - don’t make “Depends” diaper jokes on the way to the airport after an evening of food poisoning! And pack extra underwear and a change or two of clothes in your carry-on!
  • Please add the Oasis of Hope Hospital to your prayer list. It is a place of extraordinary miracles with a staff of gifted and compassionate health care workers who embody the body of Christ and humble ministry. Starting with Manny, the head of maintenance, who personally hugs and blesses every patient prior to breakfast. He did promise to take me surfing but we ran out of time! Maybe in June when the water is warmer!!!

Wednesday, 28 February 2018

Finding Ninjas in Mexico


We are over halfway through our medical excursion in Tijuana and looking forward to heading home.  The Oasis of Hope (http://www.oasisofhope.com/) is a great place with incredible staff and treatment, but it is still a hospital and three weeks in a hospital (getting poked and prodded) will be more than enough.  There are about 25 other cancer patients here, all with interesting stories and many miracles.  However, often times you really just want to have some daily life conversations, about things other than cancer and treatments. Day-by-day living, which includes a communal treatment room and three communal meals, has been taxing for both Loretta and me.  
Loretta has been busy reviewing files and organizing work for the office while here.  Meanwhile, I have been hooked up to treatment IV bags for about 3 hours/day.  We met with the doctors today and they had finally received the notes of the MRI I had on February 1.  They didn’t get the images but they were thrilled with the results and that there has been no evidence of growth.  That is usually not the case, so they both congratulated me!  They also both think that what we have been doing with the diet and the blood work have been very effective, so we are feeling very thankful for all of the angels that have led us to these alternative treatments.  Yesterday morning I gave a whack of blood that they will now customize in the lab here to raise a squad of super t-cells that will be reintroduced back into my body in four vaccines during our last week here.  I am calling them my ninjas!  Please pray that the creation of these ninja fighters is done effectively in the lab and that the reintroduction of them back into my body is effective.  We need them to be prolific in reproduction so that the small ninja group becomes an army of killer samurai that are trained to recognize my cancer profile, hunt the cancer cells down, and slay the beast.  Pretty cool science stuff.  In order to let the ninjas do their job, I’ve got to stop taking my daily chemo for the next three weeks.  After that, I’ll resume the usual chemo schedule.

If you are interested in learning more about this ninja treatment, you can read about supercharged t-cells here: https://www.cancer.gov/types/brain/research/immunotherapy-glioblastoma
Treatment room
Morning devotions
Prayer requests:
1. Ninja warriors grow with an intense desire to kill my GBM cancer cells.  And then that my body accepts these ninja warriors and they grow quickly in my body.

2. Good health for both Loretta and me during our last days in Tijuana.  And then that the vaccines work powerfully when we get back home.
3. The tax season work for Loretta and her co-workers goes well in March!
4. We may continue to be nourished by the daily devotionals here.
5. Strength for the daily routine here.  
6. Thank God that He directed us to this place.

Wednesday, 21 February 2018

Oasis of Hope - Day 1

Travel: planes were all on time.  Long lines everywhere, which were so bad that there was no time for Loretta to get Starbucks prior to the flight.  The car and driver from Palm to San Diego was brilliant.  It saved us about an hour versus connecting flights.  First class BMW 7 series sedan - leather seats and great driver.  Plus In-N-Out burger for lunch.  The shuttle van from San Diego had another stop so we waited at a small airport for a patient, coming from a private jet.  And then the border crossing.  And then way too much traffic in Tijuana!  The day got tougher when we got to Oasis.  We were reminded in a powerful and emotional way about the beastly battle we are in, as daily life in Edmonton is quite close to "normal" with routine and cooking/working/hanging with family.  It was a tough emotional day, especially after the long travel day.  But now we are hanging with all of these "sick people", hearing all of their stories, many of which are a blessing.  Lots of great people from around the world - Nigeria, Scotland, Canada!  Many inspirational stories and people, many who are back for their round 2 treatments.  Their passion for this place is so evident, which is affirming for us.  Almost everyone has a "how did you hear about Oasis" story to tell and it is often asked early in the conversation.
Hola from windy Tijuana!
All treatments are done in a community treatment room so there is a great sense of community.  All communal dining as well.  Full days with treatments all morning, plus educational stuff in the afternoon.  Food has been good.  Tons of really fresh salads and veggies.  Fish twice a week seems like the extent of our meat-eating while here.  Accommodations are certainly not as nice as they look on the website.  But if you consider it's a hospital, it's certainly better than most.