What's New

In the midst of drama and intensity, I treasure the moments where Jordan's personality can shine through.  After dear friends brought over a delicious, homemade treat this evening, Jordan requested they pray over him before leaving.  Shari touched Jordan's hair and commented how soft it was and apologized because she was supposed to be praying.  Jordan's response to her apology?  "It's okay, it's new." 
I asked him why he asked for prayer.  He said, "I just never know when it's going to happen...when I will see my healing." 

Kim flies out tomorrow until Sunday morning for a conference he was asked to speak at months ago.  He didn't seem to have intention of going until Monday when I encouraged him to go without us.  3 reasons:  Jordan hates that our lives have come to a seeming standstill, it is an atmosphere of faith and it is a mental break.  Joel will be my caregiving partner until he takes his bus to his summer job, Saturday morning.   


In order to minimize the pain, we have begun the first of 10 radiation sessions.  Not fun for Jordan to renter the medical environment.   And that's all the new news.

New Pets

Tucker has some competition.  As of today, Jordan has two new pets – yet unnamed: a clown fish and an orange anemone with a symbiotic relationship.  An amazing friend spearheading a wonderful group of friends has provided a salt water aquarium to the delight of Jordan.

Today marked a painful milestone.  Jordan was unable to wear his jeans due to the size of the mass above his knee. And yet, prayer is still Jordan's first choice when it comes to pain, nausea or discomfort. He is a warrior.  He knows the stakes and there are no illusions for him.

Wonders

It is a wonder to me to watch my son's concern for others often even when he is in pain.  I find pain to be blinding - to everything beautiful, hopeful and outside myself.  Kim and I were comparing notes on our observations of what happens to Jordan when he is without pain and lucid.  Last night he held out his hands for mine and asked if he could do something for me....massage my hands for a change,

Kim is playing his guitar in Jordan's room while he gets ready for bed.  I can hear his ache in the strumming and the determination.

We received a beautiful reminder from a young friend who works at Subway when Jordan unpackaged his sandwich. Pic below.

Fathers Day

Jordan has enjoyed a two full nights and one full day with limited pain or nausea since almost doubling his dosage once again.  It's been a relief for all of us...yet strange how we were almost more tired.  Kim thinks it's an adrenaline low after the storm.

Joel is now 20 as of Friday. Looks like we may get another week with him before he heads to summer camp counselling in Saskatchewan with Matt who is already working as Program Director.  Joel has been kept busy here as Entertainment Director.  He has been able to find the funniest YouTubes, cartoons and comedy sketches.  For me, there is nothing like watching Jordan laugh with Joel.

I watch Kim at least once a day head outside for a walk to wrestle this whole thing out with God.  It is Father's Day today and I am honored to be caregiving alongside such a terrific dad. His roles include, but are not limited to:  TA Technical Advisor for all things screens, CFO Chief Financial Officer, NG Night Guard, CM Counsellor to Mom as well as CM Chief Mechanic for our car and Jordan's remote control car. 

I wonder what my Dad's perspective is like now.  He has been in heaven for almost 2 years.  How does he view what is going on with his youngest grandson?  Could really use some heavenly wisdom right about now.

A Sweet Moment

The days have been strange since we returned home.  Mostly rainy which I think is unusual for this time of year. In an attempt to help Jordan's hair remember its strawberry blonde color we want to get out in the sun when possible.  It is interesting to me how very important this sense of looking "like himself" has become to him.   We just know the fresh air and sun is so good for him.  So when the clouds parted this afternoon we moved out to the backyard, lazed in the swing back chairs, donned our shades and I resumed my read to Jordan.  I have loved to read aloud to my sons ever since they were young.  And even as they grew into teens, when we are on road trips I would be elected to read aloud from a favourite novel.   So I do love this.  At the moment, we are nearing the last quarter of the book "Hood" by Stephen Lawhead. It is the first in a trilogy followed by "Scarlett" and "Tuck".  You can guess the historical figures they envelope.
The sweetest moment for me though was when I returned with a fresh glass of water from inside and came from behind Jordan's chair only to hear him singing quietly "it is well with my soul".
Considering the morning had been so achingly frustrating for him with random pain strikes that would not go, the sweetness was extraordinary for this parent's heart.

And after I wrote this yesterday afternoon, the next 30 hours have been brutal.   Usually Jordan can sleep without pain, with us waking him for meds. But even through the night, the pain persisted.  With Doctor's consult we have once again almost doubled his morphine.  And still his leg spikes at times. We came close to admitting him to the hospital.  He sooo doesn’t want that – needles and all that goes with it. In the last few hours the nausea has returned with a vengeance. So he has headed to bed early hoping that sleep will cover for him.

Through all this Jordan battles - oh my heart.  I try not to cry since my eyes swell shut and my head aches so that I am not much good to him or anyone but this morning was over the top.  I looked back and realized Jordan has gone a full 9 days in the last 6 months without pain or nausea.  How does he keep his mind?  

Together

Well, somebody must be reading these blogs - over 53,000 page views (although we think that the grandparents must account for about 20,000 of these).


Here's the latest from Darlene:
When I'm fresh out of knowing how to love or comfort, I find myself rubbing Jordan's head, scratching his back or massaging his hands or feet with lotion.  All my sons have loved having their heads or backs scratched...even in the oddest public places. Sometimes they just tip their heads toward me, give me those longing looks and I know what they would like from their mom.

Food is another HUGE way of loving in our family.  And right now it is a struggle.  Since we returned home from Texas, in an effort to minimize the leg pain, we've tried to stay away from sugar/white flour....since sugar goes straight to the tumor and results in increased pain.  So what happens to some of the favourite ways to treat Jordan?  In addition to his struggle now, he is missing out on many normal treats.  Jordan has been such a great sport about it but it is still a frustration.

Thus the increase in hands on touch


And from Kim:
After being a leader in the traditional church for 25 years, one of my most common questions is, “What does our Kingdom community supposed to look like?” We have been dreaming about a network of House or Simple churches for a few years now and it still captures my heart. As that comes into view, we have really been enjoying 1 Cor. 14:26 and what it has to say about the regular gathering of believers. In light of the invitation for everyone to bring something to encourage other believers, we have created a list of 29 options of what to bring. We have been enjoying this type of gathering in our home for two years or more. Yesterday morning, Jordan asked for the list. Each of us brought something and there were many tears and smiles.
Joel brought James 1:2 and invited each of us to share 2 small things that bring us joy and one big thing.
Here’s what was shared:
Joel: a. the way Tucker rubs his face with his paws. b. overhearing Jordan having great conversations with his friends during the party Saturday night and c. that Mom and Dad are together and doing well - brings family security.
Kim: a. that when he enters contact information on gmail, it automatically shows up on his iphone. b. when he presses the gas pedal on the car, the hemi goes fast and c. Father has shown provision during the past 5 months of not working.
Darlene: a. Jordan is being such a good sport about what he is eating. b. Joel often asks about how he can help and c. people keep kindly sending reminders that we are not alone and that they are praying, some day and night. They still have faith.
Jordan: a. racing with his remote control car. b. playing battles with lego and c. that he still has his leg (the doctors strongly recommend to amputate).

Perspective

I can't even imagine facing this challenge without the confidence that Jesus bought our freedom from the fear of death and that Jordan has received that free gift. What would I be experiencing if I wasn't completely certain that after this short life, we have eternity to spend together in heaven? It would be excruciating! It would feel too desperate. And if the doctors’ prognosis were the final word...if we had no higher power to appeal to...what then?

Jesus promised that in this world we would have troubles but we weren’t to be afraid because He has overcome the world...and He is in Jordan and Jordan is in Him so Jordan will overcome.

And, If you haven't watched the videos at the end of the "What A Trip" entry, head on over. They may bring a smile.

A Few of Darlene's Favourite Things

Sitting around our kitchen table with Jordan, Joel and cousins playing a game
Hearing Jordan whistle while he builds Lego battles
Watching superhero movies with the guys
Listening to the rain while we go to sleep
Enjoying Joel's berry shakes made to order
Receiving emails from friends and family who are not quitting

Stubborn Hope

It takes energy to take every thought captive, not let the "what ifs" run roughshod over me.  The physicians are certain of the outcome of our journey.  Hope stubbornly reasserts itself into the picture even when it would be easier to just give in the "inevitable".  We are made to look beyond ourselves.  And in Christ we are designed to overcome.

Last night we received news from one of the young men that shared the cancer floor with Jordan in Children's Hopsital.  While prepping for brain surgery with a final test, they discovered that surgery is no longer necessary since the tumor has shrunk without additional chemo.  Praise God!!!!  I laughed and cried and celebrated with them as they thanked everyone who supported through prayer.

With God, nothing is impossible.

Tattered Flag

Well, we have returned from Texas. While we had many moments of tangible love (thanks Bill, Jen and kids) and we received powerful and faith filled prayer from the team there, the evidence of the healing Jesus paid for eludes us. We don't understand and at certain times, our faith is in tatters. But we piece together the scraps that remain and raise the flag proclaiming that we believe God is good and has provided all we need for life and healing through the finished work of Christ.  So coming home was very mixed for us all.

Thankfully after meeting with our paediatrician today, Jordan’s pain seems under control with his meds being more than doubled again. For the last few days it was as if we had an unwelcome visitor controlling every moment.  Just last Saturday, Jordan had 10 hours free from pain with no meds.  We were so excited... but before we could share it on the blog, the pain returned with a vengeance.  It felt like a cruel joke and put us all in a tough place.

Jordan and Darlene enjoying a moment

They say we start looking like our pets