I don’t even know how to start this update.
Usually I have words bottled up inside waiting to be shared but these days there aren’t many words.

I feel numb.
I feel lost.
I feel empty and heartbroken.

My thoughts feel so jumbled and unstructured.
My mind won’t shut off but nothing makes sense.
Trying to Process, considering, contemplating, and deliberating. My mind is racing and then just like that it is completely blank.

Anxiety is hovering.
It’s everywhere.
Words are at the tip of my tongue and then they are gone.

There is so much I want to ask but my questions can’t be answered.

Why is this happening again?

Why does Logan have to suffer so much?

Why can’t this be happening to me instead of her?

How will I find the strength to be strong enough for her and for myself?

Will there be enough love and patience to get my family through this one more time?

How come I was not more grateful, more in the moment and more happy about how good things were?

How much time do we have left together?

I feel disengaged, and removed and not myself. I can’t believe that anything ‘normal’ can be happening in the world right now. I can’t contemplate how life just goes on, or moments can continue because all I feel is my family’s world completely crashing down.

Years ago, when Logan was diagnosed for the first time, I felt the same way.

It feels like this is all one big lie, a terrible mistake or a bad dream.

It is almost impossible to accept this as our truth.

Only  this isn’t a lie.

It is cancer.

For the fourth time.

And even though it doesn’t feel possible that this could be happening again, I know how real it is  because I watched as the nurses ‘gloved up’ and Logan took her first dose of chemotherapy.

I cried as they pushed it though her tube.

This journey we are about to embark on once again feels so daunting and inconceivable.

It’s going to be a long haul.

It’s not going to be easy.
Logan is not starting out in a good place. She is not as well or as strong as we would want her to be. Her bone marrow is damaged from all the previous therapy. She has so many issues related to radiation.
We haven’t had surgery to relieve any pressure, no time to get her body ready to take treatment, and not one moment to emotionally prepare for any of this.

It came out of no where and Logan has declined quickly and unexpectedly over the last two months. This past week has been exceptionally tough.

We had a meeting with our oncologist while she was in surgery Tuesday morning and yet another new treatment plan was established.

We decided on a different chemotherapy regimen than we originally discussed.

Apparently this protocol has better overall results for tumour shrinkage. About 50% of patients saw shrinkage on this study versus just the disease stabilizing which  Temodar would likely provide.

As a team we decided  we need more than to just stop this thing from growing. In order for Logan to feel better, we need it to regress.

There will be four drugs in total administered over a 6 week cycle. There will be 8/10 cycles in total depending on what she can tolerate.

Over the first three days (78 hours) she will take three of the chemo drugs every six hours. She cannot eat or drink anything for three hours between each dose. Then at day 14 and day 28 she will receive the fourth drug.
She will have blood and platelets given as needed. The cycles will take as long as her bone marrow needs to recovery. Ideally we hope she won’t be too delayed. Staying on track with the regimen will be key to the overall success of this protocol.

If all goes well, she tolerate the drugs ok, and the tumour responds, this chemo this will go on for about a year and a half. If anything fails, and it isn’t working or she isn’t tolerating it, we have the Temodar to fall back on. There are also a few other phase 1 trial options but we don’t want to go there just yet.

There will be MRI’s to check for progress which will be preformed every 3 months at minimum.

Dr. Hukin ordered an emergency MRI and angiogram which we had yesterday so now we will have a better handle on if and how much this tumour has progressed in the past couple months and we will also have a proper baseline to start this new chemotherapy.

Happily things don’t look much worse in the past 6 weeks and she isn’t having strokes. Although these results are arbitrary, because really, we know where are at.

Logan’s symptoms are getting worse but we have to celebrate every win and the MRI has given us some hope that we have time to continue to work on getting things under control.

She isn’t eating much and trying to get the three litres of fluids a day into her seems impossible.
She is losing weight, slurring her speech, she is having trouble with her vision, her hands are shaky. She is weak, unbalanced and her blood pressure remains unstable.

They decided to admit us to hospital on Tuesday to help support her through this first round of chemo. We weren’t expecting to be admitted and we aren’t sure how long we will have to stay here but we think it’s a good plan to have a team of nurses and doctors working on her.
Honestly, it was becoming too much to manage everything at home.

She also had a feeding tube inserted this week.

It was unexpected but it was also the right thing to do.
Logan understands why she needs it but is also completely devastated about having to wear it.
She has lost about 17lbs since summer and because her appetite is only going to get worse on chemo our oncologist made the executive decision to have it inserted along with her port during surgery.

The little yellow nose hose also completely breaks my heart.

She is 19.
She doesn’t want to fed through a tube.
She wants independence and freedom.
She cares about how she looks and just wants to be as normal as possible. She wants to make her own choices and this line hanging off her face is just one more visual reminder of how much is being taken away from her, how sick she really is, and how living with this disease traps her.

She’s embarrassed for her friends to see it and it makes me sad.
She doesn’t want to be stared at or seen as any different. Cancer is hard enough to deal with but having a tube run out of your nose is just a magnet for pity.

No one wants pity.

I know that her real friends won’t be phased. In fact, I think they will see her (as we do) as even more beautiful, brave and strong but she also doesn’t care about that.

She is tired of being measured by how much pain she can endure.
For her, it is far more simple.

It is ugly and she hates it.

She hates it because it bothers the back of her throat when she swallows. She hates it because she hasn’t been able to eat enough to avoid getting one and that makes her feel like a failure.
She hates it because they have pasted a giant sticker on her face and she won’t be able to wear proper make-up and she hates that even on her ‘good’ days she will be hooked up to a feed bag for about 10 hours a day.

This is all such a mess. I snapped at the dietician today. My temper is short.

Right now all of us are feeling very deflated, afraid, tired and overwhelmed. There are just so many new things to manage and to think about.

We’ve already run this marathon three times. We’ve crossed the finish line, or so we thought, and we’ve been out of training for a long time. We feel lost.

But I remember this course, all of it.

It’s hitting me like a ton of bricks and the magnitude of what is really happening is blind siding me with fear and panic. Walking these hallways, seeing the nurses, doctors, social workers and therapists is surreal. The smells, the sounds, making dinner in the patient kitchen, walking to the play room, sitting in the parents lounge, it all seems so unreal. I know where I am but it is almost like I just can’t believe we are living this all over again.

None of us can.

But, we will get there.

It will just take some time to processor it all, to let it all sink in. It will take a while for us to catch our stride again.

But we will.

And I thank you all for giving us the space and support to do so.

We know in time we will find our way through this again, we will find the right words to say, the strength to trudge forward and the will to survive and beat this F’ing cancer once again.

Much Love,

J

 

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.
❤️