Lorlatinib – These Are My Scars

Hello dear readers.

I have a favour to ask you.

I was contacted today by a young mother seeking help for her 4 year old son who has ALK MYCN driven neuroblastoma. They have been fighting for almost all of his short life and time is running out. What they need is access to Lorlatinib, whether through trial or off label. Rivky

“My son is refractory with rapidly progressing disease which is overtaking him. Last Thursday he walked in park and kicked ball, today he is immobile with his ilium destroyed by disease…We traveled around the world (from UK to Sloan Kettering and to Germany most recently ) to save him but he keeps relapsing. Since his latest progression on last week’s scans we are sent home on palliative care. We are in sheer disbelief and devastation. We love him so much. We literally left no stone unturned. Today, lorlatinib went into phase 1 trial for neuroblastoma, but my son doesn’t fit the study entry criteria, despite being one of not many children who express ALK amd mycn, for which lorlatinib has preclinically shown to be effective even as single agent (this is saying something big). We don’t have the time to wait and see if he would fulfil the entry requirements and his oncologist believes we are doing him no favor by keeping the fight. And so I couldn’t yet convince her to apply for lorlatinib on compassionate use. My son was on ceritinib but progressed thru it, he is refractory to chemo and has to great a disease burden for immunotherapy. All we have left is really the pain meds.”

If you can share this, or if you know of someway to help please contact me.

Time is a commodity not many value until it is taken away.

Then it becomes priceless!

On October 13th, CBC Aired an interview Peter Mansbridge did with Gord Downie, I watched with anticipation, curious to see what he had to say after The Hip’s national broadcast on Aug 20th. I hoped it would reveal that he was in some miracle treatment, that things were going well and that he was the Gord we saw on stage. He was in some respects, he discribed with great passion his legacy project: The Chanie Wenjack Fund and his upcoming new album Secret Path, both fulfilling a promise he made to our First People’s. It is his hope that this Fund will help support reconciliation between Canada’s Indigenous and non-Indigenous peoples.

What was heart breaking was his admission that his memory, once great and vast has diminished. He had to write words on his hands to remind himself of things. For his epic perfomance that our nation watched, he needed 6 prompters to help him remember the word to the songs. Songs he once wrote.

http://www.cbc.ca/news/thenational/gord-downie-exclusive-interview-1.3804422

I know how it feels to forget. I do it too.

Since starting Lorlatinib, I have seen a sharp decline in my day to day memory. Despite what my cognitive tests show or test for. I have experienced Brain fog before, but never like this. It was like someone had hijacked my brain. I felt like I was losing my mind.

In the beginning I just didn’t know what to do. I couldn’t remember if I had fed the dogs, or where I left my shopping cart, whether I had spoken to someone or not, or what I was saying in conversation. It was traumatizing!

My solution was to just write it all down. So I literally had lists, lists everywhere. I have adapted over the last few months and am coping better. Now I’m using what Pintrest calls a Bullit Journal. I love it. Its like an agenda where you can journal if you want, but most entries are very succinct like a list. So now I can keep all my appointments, chores and important things to do straight, no excuses, no forgetting!

I still won’t be able to tell you what I did yesterday or last week, unless I look, but looking made me realise that I was busy in the last little while and although I feel like my days all meld into one, I’ve done a lot and time really has flown by.