Beau is going to have an LP (lumbar puncture) this morning to sample his spinal fluid for rogue cells.
I know, I know. It feels out of no where with all the “New companion!” excitement of my last post. I just had to let the ideas stand alone.
Beau is in Long-term follow-up and Jude gets to be my companion.
and
Beau has an LP today to check (ensure, confirm, WHAT DO I TYPE HERE?) that he is cancer-free.
You may recall that our team in Denver had suggested an LP at out last visit in November, and I had used all the wisdom of the last four years to ignore the topic completely until after the holidays. CHOP had said they didn’t think another LP was necessary, that we would see a relapse “soon enough,” if it was going to come to pass. But our team, our home team, the team that feels very much more like family, than the sterile relationships on-study, want to check, “one more time.”
One more time.
One last time?
God willing.
One last time.
I texted Sweet Emily’s mom.
I told her I needed advice. I told her that I thought a simple LP was a fine idea and I also found every muscle in my body screaming in protest because AT WHAT POINT DO WE STOP POKING HIM JUST TO SEE! I needed someone who got it, to hear what I said and tell it back to me.
And she did.
She reminded me that data is, in the end, better than denial.
I apologized if the topic made her heart ache, but she is my person.
I texted Maeve’s mom.
“Help me understand if I should be doing this?”
I knew she would get it because he daughter, like Beau, relapsed without a single symptom. Just a couple kids diagnosed and making the slow crawl towards the light and then being taken out.
“It’s hard because he will hate it, the poking and prodding and just being back “in it” when you’ve been living “out of it” but…..once it’s done and you know there isn’t anything in there to worry about maybe there will be some extra breathing space and you will truly be able to have time to heal.
Two mamas who get it. Same advice. Get the LP and move forward.
It’s easy to consider from the outside. Just get the LP, know the data, more data is better! But anyone who easily comes to that conclusion has never waited on a call from the hospital lab to tell them if their child is cancer-ridden, once again.
The view from denial island is a comfortable one and if you have never been there, I am sorry, but you just don’t get it. Sometimes denial feels safer than knowing there is someone behind you with a bat. The waves that crash on denial island are soothing in their ignorance.
But in the end, a clear LP will provide a sip more of actual closure. Whereas, not doing it is akin to knowing there may or may not be someone behind you with a bat and then deciding that so long as you don’t look, it won’t be true.
It turns out denial island has an expiration date. Perhaps that is what makes the time there sacred.
So we LP.
Beau asked that he get marshy (propofol) for the procedure because now that he knows he isn’t going to die from sedation, he is all about that chemical sleep.
Yesterday I mentioned to Jude that Beau would be at the hospital all day tomorrow, for a procedure. Later that evening he said, “I would rather have Leukemia and get to miss school, it’s so unfair.”
GOD, please let Jude’s belief that he got the short end of the cancer stick be the biggest problem we have to navigate for the next season.
Let this LP show what our family desperately wants to believe:
That Beau remains cancer-free.
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The Heavy Wait 