Apparently, there is a storm coming in tonight and we’ve been advised to get ready.

I, however, feel like the storm already hit us months ago. It is relentless and just won’t let up.

We’ve tried to be prepared- we’ve lived through this before- but even amidst the worst of storms we’ve learned no one can ever predict what the force of nature will be.

What started out as minor symptoms we hoped to get under control quickly, have proved to be much more daunting and complex than we first thought.

I forgot. This is how the storm known as cancer usually hits.

Fast, hard, unpredictable and without notice. This time it also hit us from behind.

We weren’t expecting it.

Logan’s blood pressure is not getting better and she has not responded to the now 14 NEW pills a day she takes.

We thought maybe we could help fix things by addressing her heart, flooding her kidneys with fluid, and overdosing her on sodium.

It didn’t work.

Obviously, her heart is not the problem.

It is, once again, her brain.

She is now experiencing vascular dysfunction.

Basically, the vessels aren’t carrying enough blood to her brain and therefore her vessels and arteries aren’t maintaining enough pressure.

The reason?

A combination of problems.

Yes, number one- the one we fear the most.

There is tumour progression and the main tumour in her brainstem is slightly enlarged.

Go ahead- say it, we have said it a million times already.

“Shit!”

Ultimately, what that means is we only bought time since the last round of chemo and radiation and  her tumour was only ever ‘stable’ and not completely destroyed as we hoped it was.

For some reason the word stable never sat right with me. I dared not to say the words out loud but I always had this gut feeling this day would come again.

Yes, we are devastated, completely fucking shocked, and even though this is the fourth time we’ve heard the words ‘tumour growth’ and we shouldn’t be, we are unexpectedly and deeply angry.

However, now the tumour is not Log’s only problem. She has had so much damage since radiation that the new growth of the tumour really just complicates an already nasty situation.

It also means the blame and anguish is spread around. Her cancer is not any less devastating, it is just that we don’t know which problem is worse or what to hope for.

“Why?”
“Why?”
“Why?”
“Why is this fucking happening again???”

My mind won’t shut off. Sleep is becoming elusive. The pit in the bottom my stomach feels twisted and painfully unbearable. All. The. Time.

It is so hard to comprehend this new news because I feel like we’ve done everything right.

I feel like we have learned so many lessons, adjusted so many expectations, listened so carefully and done everything the doctors have told us to do. We’ve learned to accept so many unacceptable circumstances and move the goal post and for some reason I thought that would be enough. That maybe we’d get lucky, get a pass, that god or the universe or who ever would side with us and that the cancer wouldn’t come back.

That is what karma is isn’t it?

Be good, do good and good will come back to you?

Hasn’t Log been good enough? through enough? Hasn’t she tried hard enough? Taught us all enough? And shown enough courage? Haven’t each of us?

Plus, eleven is supposed to be our number. It’s just not fair….why would she relapse at eleven years?

Fuck, none of this is fair and even though logically I know none of the above questions matter or even make any sense, I am still asking them over and over again because deep down I still feel like I need an answer.

Our oncologist is being optimistic.

She has pacified us with her knowledge and expertise. She has told us she is not 100% certain the new growth tumour is big enough to be responsible for all of this.
We hope she is right because Logan’s decline has been so sudden. To think it could be tumour all on its own is very scary.

She thinks something else must also be contributing. Something we are missing and she’s looking. We are doing all the tests she asks us to do.

But what could it be? We have no idea.

We are just clinging to this theory as a little bit of hope at this point.

Apparently, in addition to the main tumour there is a small spot in another very sensitive area (right obex ) and signal abnormality extending into the pons.

We are trying not worry but couldn’t help and ask what exactly the new signal abnormality could be?

Could it all be tumour?

Yes, we were told it could but it could also be brain damage from treatment. We won’t know without a biopsy but there is possible further radiation atrophy.

Neither sounds good.

One just sounds more treatable than the other.

We don’t know for sure and won’t until we see how things progress but we’ve been told it’s likely combination of both damage and tumour and it’s a bloody mess.

Now, we don’t know what to wish for….

And we really don’t understand what this all means?

Logan feels terrible and it seems like we are once again paddling up shit creek.

Juliette (our oncologist) called tonight and briefed us on the current plan of action. We angrily walked out on her last week and hadn’t spoken since then.
It’s not her fault, and we know we need her help.
We know we need to let go of all this anger and our emotions are just bubbling from a place of fear but we are scared and hearing all of this seems like too much to process.

I apologized to her tonight for my anger and she apologized for not listening to us the way we needed her to and then we let it go and talked  about a plan.

First off, she said we need to get Logan’s vomiting, blood pressure and symptoms stabilized and we need to do so as quickly as possible.

Second, we need a plan to address the growing cancer and if possible the damaged parts in the brain causing all this trouble.

She referred us to a cardiologist and on the weekend we started yet another new medication. It is used for vascular dysfunction as a ‘rescue’ to tighten the muscles around Logan’s veins and keep her blood pressure up.

We are also giving her three to four litres of fluids a day to help increase the pressure. She’s taking sodium tablets, additional blood pressure meds, wearing compression stockings and we are trying to get her out for a couple hours each day for a bit of exercise.

An angiogram of the brain has been ordered to rule out the possibility of a stroke.
Logan’s face has recently started drooping and at times she has been unbalanced when she is walking.
The fear is she could be having ischemic attacks (precursors to a stroke)
Our oncologist thought it would be a good idea to start giving her a preventative dose of aspirin until we know for sure.

Next, she WILL be presented at the adult tumour board at the BC Cancer Agency this Friday.
After a gentle nudge, Dr. Hukin agrees it would be a good idea to get a second opinion on treatment options. The idea of fresh set of eyes gives us some comfort.

She will also request to see if Logan’s previously frozen pathology samples could be looked at on a molecular level. Her tumour may have changed since radiation but it will be a start to find out if Logan could be eligible for any of the new genetic research that is rapidly unfolding including that in which Dr.Sorenson/ Dr. Rod (the Dr. from the video below) have been working on.

We have a referral with a new neurosurgeon at VGH and although this initially worried us, we now understand it. Loggie is getting too old for all her of procedures to continue to happen at Children’s Hospital. Apparently, her surgeon Dr. Steinbok, is also getting too old.
He is operating less as retirement approaches and thus decided it might be a good idea to add a new member to our team.

We will meet with this new surgeon in the next couple weeks to get his thoughts, and then discuss the plan with Dr. Steinbok to see what he thinks. It’s not a big rush, as we’ve been reminded surgery is not currently a viable option that is ‘on the table’ right now.

Nothing, realistically, is a viable treatment option until we get her stabilized and feeling better and stronger.

She isn’t strong enough for much these days and is getting weaker as the days go by. She has lost about 15lbs. She is taking between 3 and 5 doses of anti-nausea meds a day. She’s not eating much. She’s slurring some words, having more trouble swallowing, more intense headaches and is just so darn tired that every day small tasks are taking an obscene amount of effort.

We spend a lot of time in our jammies.

It really sucks. We’d rather be on a beach, or at least planning a trip to a beach.

We are angry and we are trying not to be angry all at the same time.
We know this is no ones fault and at the same time having no one to blame is one of the hardest parts.

We have been so lucky, and we know it.

We had so much progression free time- travelled the world, celebrated milestones, but somehow….

it just doesn’t feel like enough.

Logan is doing her best to plug along and stay strong but mostly she is just sad and frustrated with her lack of freedom. She hates being held back and is discouraged with her attempts to go out for a couple hours per day. These excursions make her so exhausted she usually needs an afternoon nap just to recover.

She’s tired of Netflix, of colouring in her swear word colouring book, spending all day with her mom and she is so damn tired of sending snap chats to her friends while laying in her bed.

She desperately wants to feel ‘normal’ again.

I am thankful to her friends Dani and Taylor for getting her out today and for coming last week as well.

You guys are exactly what she needs- friends, love, and a solid medical plan.

We know it, and we are working on it.

A plan to feel better is our only focus.

All other plans are on hold. There are currently no big trips planned- no amazing adventures on the horizon. No getting up early or staying out late. The calendar is not full of highlighted commitments and we aren’t saying yes to many activities.

For us, right now, it is about hunkering down. It is about the mundane, every day, repetitive, same ole’ routine of trying to get these cancer symptoms under control.

That is it. Nothing more. Our circle is small and we aren’t feeling very social. I apologize if you want to help and we don’t respond. Quite frankly, we don’t know what to do either. We just need some time, and when we finally regroup we know you will be there for us. You always have been, we love you and it is not lost on us.

But, for now, we just need down time to regroup because even with our reduced schedule, lack of activities and our 11 years of practice this ‘life all over the map‘ just doesn’t seem very easy to manage these days.

Basically, we are just barely holding it together, grasping, and trying to keep the blood pressure up, the puke down and the hope alive that this storm will pass very soon.
❤️