Jared says having a kid with cancer feels like trying to live while having a gun pointed directly at you.

The revolver has six chambers with three bullets loaded into it and every once in a while the gunman pulls the trigger.

You pray to hear the click.

You pray if the trigger gets pulled and a bullet is released you will be quick enough to dodge it.

I feel like all we’ve been doing this week is dodging bullets.

Logan has not been well and for lack of better words, it has scared the shit out of us.

She is two weeks post chemo and has been feeling pretty rough since we gave her treatment. Some weird symptoms had started before chemotherapy and since she was progressively getting worse as the days ticked by we chopped it up to side effects of treatment.

But as the days passed and the chemo should have have moved through her system and she wasn’t getting better we feared something else was very wrong.

I should have knocked on wood when I said I didn’t want to be in the hospital the first week it opened because here we are.

Nausea, vomiting and a sudden high blood pressure (what!?!? her problem is usually very low BP’s 😳) had us worried. So, despite knowing opening week was going to be a gong show I was forced to bring her in.

She hadn’t slept for 3 days (despite meds to try to force her) when the hallucinations started.

“Do you want to get matching outfits with your boyfriend?” She asked me.

I gasped.

“Do you know who I am?”

She was puzzled and disoriented “You aren’t Tayler are you?”

I started to cry.

“No Loggie, I am not Tayler, I am your mom.”

It didn’t phase her.

She was so confused.

She proceeded to tell me we couldn’t park our car in the spot we were currently in because Brody hadn’t put any money in the meter yet.

We were still in her bed.

I panicked.

Immediately, I called the oncologist on call and we were admitted. (More or less this is how it went down- I’m going to leave out all the drama of getting admitted to the new hospital on the first day or sleeping on the emergency room floor- or having a new nurse who couldn’t access a port or finally getting into a room after almost 24 hours to find the door wasn’t hung properly and didn’t close. Let’s just say the new hosptial is shiny and new and a total upgrade- which it absolutely is. 🙄😉)

We ran the full gamut of ‘to be expected’ tests and then added a slew of new ones just to be sure.

Check her kidneys ✔️
Check her liver✔️
EKG to check her heart ✔️
EEG to make sure she wasn’t having seizures✔️
Cortisol test ✔️
Meeting with endocrinology team✔️
Consult with cardiology✔️
Blood cultures✔️
Urine test ✔️
Two bags of blood ✔️
IV fluids✔️
New anti-nausea medication regimens✔️
Full neurological exam✔️

Nothing improved, but nothing stood out.

We needed an MRI but the new machines weren’t available or up and running at full capacity.

Thank goodness our oncologist is ‘Bobby Big Wheels’ around here.

She ordered the scan as an emergency and we were admitted as the first patient to stay in room 116 on the new 8th floor of BC Children’s hosptial while we waited.

We were greeted in the clean and cheery new space by our favorite, familiar, yet totally frazzled nurses (it’s been a week of growing pains for everyone). We were given a handmade quilt covered with owls as a gift.
It made us smile.
How fitting for the ‘wise’ ol’ veterans we are. 😉

Twelve and a half years, 3 oncology clinics and 2 hospitals later, so much has changed- except for one thing.

Cancer.

Cancer has stayed the same. It has always been relentless, nagging and such a damn dictator. I guess it didn’t get the memo that it was supposed to get a fresh, clean and cheery overhaul along with the new space.

We finally had our MRI in the fancy updated machine and after a few hours we got the results. Waiting for them was physically painful. I broke out in hives.

My nurse came to visit- our doctor- and the ward doctor. We talked about the possibility of shitty results and collectively shed a few tears.

Based on Logan’s symptoms we were all absolutely sure the scan was going to come back confirming our biggest fears- We were sure today would be the day we faced a bullet we couldn’t dodge and we wouldn’t hear a click.

Loggie was clearly agitated and worried about the results so I talked to her about the ‘what if’s’

Brody had a total breakdown and told me he hated this life and how he never feels happy anymore. Then he bawled his face off and told us how sorry he was for even having his feelings.

Jared and I snapped at each other- it’s been 15 years of marriage this week and almost 13 years of cancer. Just so you know, it takes a hell of toll on the partnership (another blog)

What is next? How will we get through it?

We all wondered and tried to prepare for the worst.

“Be strong. Don’t fall apart. #rollwithit” my inner voice was on repeat.

We started talking about an invasive and super risky surgery and clinical trials showing promise (for a mere $400,000😩) in Alabama when Dr Elaine reminded us not to futurize too much.

Dr. Elaine is the ward doctor in oncology and the sweetest person you’ve ever met. She literally is. Her voice is soft and her energy is so loving and compassionate.

After she left the room and considered our conversation she came back to apologize for using the term ‘furturizing’ (which I’m not even sure is a real word)

“I thought about it,” she said “I futurize all the time and I don’t even have close to what you have going on. It probably wasn’t a very compassionate thing to say.”

I told her how I loved her word and how it jolted me back to the moment. Exactly where I needed to be.
It was the right word. It was what I needed her to say. I told her I appreciated how she intuitively knows how to navigate this unknown territory and how she is doing a great job even when she is unsure.

Then I shared with her how Logan had told me she was realizing her own limits and how she was also futurizing.

“We all do it” I told her “Even when it’s not helpful.”

I realized how ‘futurizing’ although not always helpful can give us the tools to prepare for the unknown and give us the courage and permission to express our personal wishes.

“I’ll do whatever they want me to do Mom. I’ll even attempt the surgery if it is my only hope.”

Logan paused and looked directly at me….

“Unless the doctor tells me there is a good chance I will wake up paralyzed. I really don’t want to live like that.”

Then she started to cry. (Which almost never happens)

“Mom, I want you to know, I’ll suffer through almost anything but if I have to be stuck in my body and can’t move and you and Dad and Brody have to take care of me like that, I want you to know I’d rather you just let me die.”

Elaine and I both cried at the thought.

“I just don’t want this for you guys.” She said.

The most compassionate words she could have ever said is exactly how I feel.

We can’t change the way things are in our lives but I just don’t want any of this for us either.

Anyhow…..

Thankfully the MRI came back and jolted us out of our slump. Preliminary results show the tumour looks stable.

Phew…..😩😩😩😩😩

They reminded us these results are preliminary and they need some time to do a full assessment and comparison. They need to really look at the scans if they want to be 100% certain but the initial impression is there doesn’t seem to be a dramatic change in the pictures.

You have to understand, Logan’s tumour is not growing as a solid lump but rather crocheting it’s fibres through healthy and damaged tissue.

Without physically cutting her open and looking at what’s going on all we can do is compare her scans when in reality we (or even the best doctors) aren’t really sure what we are looking at.

A slight change which could never be measured on an MRI could cause a big change in Loggie because of the crucial area in her brain where the tumour is infiltrating.

We’ve been told to remember the picture is one thing- clinically how Loggie is doing is most important and how we measure progress.

They asked us to give them a bit more time to have the scans reviewed and the option of having few more doctor’s opinions weighing in before giving us the final report BUT the good news is there is no new lump in another area of the brain which is what I think we all feared the most.

Bullet dodged.

This means we should feel better and somewhat relieved but simply put- we don’t.

Probably because this sudden setback has been a reminder of what we know is coming down the barrel.

It is a reminder of the hell we likely face soon and how valuable and limited our time together is.

It has awakened us once again to how quickly things can change and how hard this is on each of us not just Loggie.

Childhood cancer is a family disease.

It has also reminded us that the gunman still has his finger on the trigger.

The toll cancer is taking on Logan’s body and each of our souls feels unbearable at times.

The ups and downs- the fear and hope- the going from the worst case scenario back to accepting our current reality as good enough is hard and unfair and exhausting.

But it’s also all we’ve got. (#rollwithit 😩)

I told Logan I don’t want to live without her and that is my absolute truth. So with those words comes the responsibility to accept where she is at and all that comes along the bullshit- that is cancer.

The plan is we will spend another day here getting more IV top ups and we have a few more tests and assessments and meetings with doctors on Monday.

Logan’s vomiting is now under control and we are starting to see some low blood pressures returning. 🙌🏻🙌🏻

She’s getting extra fluids and electrolytes and we’ve started a new medication for sleep and nausea. She’s improving and it seems her system is being reset.

This ride on the emotional rollercoaster seems to be returning to the station and we can’t wait to jump off.

It’s hard to live like this.

It’s hard to face the fear that at any moment the trigger could be pulled and we won’t be lucky enough to hear the click.

It is hard to know whether we should be relieved or happy or content because we dodged a bullet today or terrified and fearful because we know there is another bullet in the revolver and the gunman relentlessly continues to point that f’ing barrel directly at our life EVERY. SINGLE. DAY.😢 ❤️