After her brief hospital stay, Atia was released. Her blood counts were still below the minimum threshold for treatment, so the plan was to refrain from taking chemo for a week. It wasn’t the first time this had happened, but it didn’t stop the knot from forming in the pit of my stomach - some things one never gets used to.
I hated that Atia had to take chemo, but I hated it more when she couldn’t. As I’ve expressed in the past, I feared the “time off”. To me, it was like inviting trouble, evoking the devil. When she couldn’t take chemo she was stripped of her protective armor, leaving her vulnerable and exposed.
My mind was in overdrive.
I was afraid – terrified, really – and my worst enemy (other than Atia’s cancer) was my own mind. I would too often get lost in my web of dismal thoughts, like a tortured crime scene investigator tirelessly pouring over files searching for that one overlooked clue. I was tormented.
Why were her counts low? Why wasn’t she recovering faster? What caused this roadblock? What was happening inside her precious, dainty body that we couldn’t see? That she couldn’t feel?
The day before she was scheduled to resume treatment, a home care nurse (from a 3rd party company) came out to access Atia’s port and gather a blood sample to confirm that her counts had sufficiently increased. Easy breezy, except that it wasn’t.
The nurse had difficulty drawing blood. She pushed and pulled the needle in and out of Atia’s chest so many times that I lost count. Atia was a wreck. The little girl who’d always been so brave, had cracked after the 2nd or 3rd attempt to access her port. It hurt! It really, really hurt! Atia cried and I panicked. My body physically started shaking as I held Atia on my lap. What was going on?
The nurse finally decided to give up. Atia’s face stained with tears showed the slighted sign of relief, but for me there was no relief, only added stress and resentment. I was furious! How dare she? What the hell was wrong with this nurse? My jaw was tight, my eyes shooting daggers.
The nurse calmly looked at me and proclaimed that a blood clot had formed.
A WHAT?!? That had never, ever, ever, ever happened before.
Any family with a child battling cancer will tell you that routine is paramount. Deviating from routine is catastrophic, especially when life feels like its being held together by a thread – an incredibly thin, delicate, strained thread.
Atia had never had a blood clot!
What the hell was going on?!?
Her blood counts were all screwed up, she was off chemo and now a blood clot!
And thus the internal debate ensued –
Could it be that this nurse simply didn’t know what she was doing? No, of course she knows… or did she? Well, how do I know? She’s never tended to us before. Maybe she isn’t use to the type of port Atia has, although I’ve never heard that there was anything special about hers. Yeah, that’s got to be it. It MUST be! She didn’t know what she was doing. It’ll be fine. Tomorrow morning, we’ll just go see Ms. Mary, Atia’s favorite nurse, and she’ll straighten this all out. Yes, I’m sure of it. This is simply a misunderstanding. Her port’s fine. It’s totally fine. It’s got to be fine. It’s FINE!
The next day we went to clinic and Ms. Mary tested the port. Turns out, the home care nurse had correctly diagnosed the issue.
ATIA HAD A BLOOD CLOT.
So, what now? Do we have to remove the port? Oh, God! Do we have to make her go through another procedure?
Ms. Mary is so patient with me. She’s practically a saint. “No, her port doesn’t need to be removed. Yes, blood clots happen. Please, try not to worry. We’ll get her all fixed up”, she reassured me.
She explained that a blood clot in the port was like a clog in the pipes. They had medicine specifically designed to perform like Drano; its purpose was to dissolve the clot.
But, injecting the medication took skill and patience. It was a struggle because the clot was clogging the internal tubing. Ms. Mary had to be very careful about the amount of pressure she used - too much pressure and the internal catheter could burst beneath Atia’s skin.
Watching the process, I think I had a small heart attack – my cheeks were flush, my palms damp, my breathing turned to panting – but Ms. Mary, the pro and seasoned veteran, took her time and methodically worked the serum into the obstructed site.
And there it sat for an hour. Tick, tock… would it work? Tick, tock… would it WORK? Tick, tock… WOULD IT WORK?!
I was going mad – Mad Hatter mad, padded room mad. And then like an apparition they appeared out of thin air, our friends Coleson and Chelle walked into the chemo room. Coleson was there for his monthly treatment. We had no idea we’d see them. It was a welcome surprise. We met Coleson, Chelle and their family in that exact room earlier in Atia’s treatment. Our stories were similar and we became fast friends.
Finally, the time had come. Ms. Mary pulled back on the syringe creating a vacuum and Pop! – there was an audible pop - the blood began to flow. Ms. Mary had unclogged Atia’s port, and was able to collect a blood sample. I exhaled. Atia’s port worked!
It was cause for celebration. “Popsicles all around!”, I exclaimed. Atia’d earned it and with Coleson’s monthly injection moments away, so had he. The kids finished up quickly and we said our good-byes. We went home to wait. Wait for the blood results.
A few hours later we got the call – causing grave disappointment – it was a No Go! Atia’s counts were still too low. Within moments I was plagued with new destructive thoughts, while tears rolled down my cheeks.
Week 2 of no chemo began...
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