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