Phin on Phire

Hey Phin phans, it's Neesha (Dustin told me to tell you that, but I have faith you'll know the difference) 

Here's Phin looking a lot like himself again after he got some blood (3 units) and platelets (2 units). His skin has some color in it, his energy is up, and his good days are good days for everyone.

This was taken on Monday morning, right before he got his CVC inserted (more on that in a moment). Phin, who has always loved to climb, was all over that pre-operating room, scrambling up the back of the bed, pretending to ride it like a pirate ship or posing regally like a king on his throne. Being his joyful, risk-taking, energetic, 4-year-old self.

It was just really nice to see this again, after a few weeks of him wilting without us understanding why, and days of treatment and recovery. And of course there are many hard days ahead, but he's still in there. This is the Phin we know and love. This is who is waiting for all of us on the other side of this nightmare. 

Medical Updates for Today

March 28

A CVC similar to the one Phin now has

Phin had his double lumen central venous catheter placed in his chest today in preparation for the start of his first induction of chemotherapy some time tomorrow morning. 

(Side note: there are at least seven words in that first sentence that are brand new additions to my vocabulary--ones I never dreamed nor hoped to have to learn.) 

It looks like the one in the image to the right, only Phin's is on the other side of his chest above his heart. Also, this is not a photo of Phin. He'd be mortified to have to wear a diaper. 

As he'll tell you, he's a "big boy not a baby!"

 (And here's my citation for the source cus, you know, once an English teacher....)

Phin was opposed to a few major aspects of this surgery:

A nurse adjusts Phin's pulse oxymeter,
a process, as you can see, he has become accustomed to.

• Removing the school shirt he'd insisted on wearing since he arrived at the hospital on Wednesday
  
  
• The nursing staff's efforts to coax him into trading said shirt for a hospital gown with tigers on it because the tigers "are not his favorite animal"
  
  
• The suggested removal of the "noodle" aka well-wrapped/protected IV from his left arm, which he'd grown attached to
  
  
• Not having Mama directly with him in the room while under sedation for the surgery #notthatkindofdoctor
  
  
• Oh, and, of course, not wanting the thing on his chest

Valid.

March 29

So, that's done now and tomorrow today his chemo begins. He did not seem to notice the catheter when he woke up, but he was hungry and demanded we remove the tiger hospital gown they put on him when he was sedated. He was not going to suffer that tiger hospital gown.

Phin on the Daily

Through the weekend, Phin battled a nightly fever that caused serious sleepiness or, at least, weakness. He has not been interested in eating much more than once a day, and when he is hungry, he's absolutely ravenous, but the window may be short-lived. His food wants have also been tricky. For the first few days, he ate every nugget the hospital brought. Once, he requested nuggets, fries AND French toast. Then it was just chocolate brioche bread from Whole Foods, then mac and cheese (the little shells only) with BBQ chips. Yesterday it was meatballs, but we got breakfast sausage from the UberEats restaurant delivery by accident so he ate them instead, with a promise from his Mama that he really would like them (and he did).

Right before the surgery to insert his CVC

But when he DOES have energy, he does everything from painting to moving his Henry (his IV tower aka shadow) by standing on it and swaying his body back and forth like he's dancing to painting, doing puzzles and waving at folks who stop by to drop things off from the window. The Wild Kratts or Muppet Babies shows are ALWAYS on in the background of these activities. 

A quick note of thanks here to everyone. 

Literally. Everyone. We get a lot of questions asking what we need and we honestly don't really know yet. We have very dear friends who have walked these quarters before who know more about what we need than we do. Part of what makes it hard to give an answer to that is the main need, which is for Phin to get better. It's hard to see beyond that giant, glowing sun of a need to the needs obstructed by its view. Another part of what makes it hard to answer that is understanding, with some things, what we need is contrary to what we are used to reminding ourselves we need or even realizing we need at all. My instincts are acting against so much of what we regularly need to tell ourselves: eat, sleep, breathe. There are moments where I will be standing and suddenly my entire body feels so heavy and like a total physical collapse is imminent. We are still figuring out exactly what needs we can meet and which we need help with, but a friend whose daughter is undergoing treatment elsewhere for a different series of cancers (she has three) recommended we post our needs in this blog as we think of them. I promise, as we figure out what they are, we will share. Thank you for your desire to help us fill them.

Granny and sisters wave at Phin in his window

The support we have here is so tremendous, so very much more than we could begin to understand the reaches of. If we don't respond, please just know that your words, notes, quick texts, emails, messages, prayers and intentions and masses (he is so so covered in prayer from so many places and I am so grateful for this every moment of the day)...everything you're doing has held us up and helped us get through the first few days of this impossible phase of our lives. When I feel weak, it is those who are supporting and loving us and our boy with prayer and encouragement that holds me up. It is your words and prayer that keeps me from falling to the ground in despair and helplessness. Thank you for already fulfilling this need I could never have imagined having before.

Phin and "Henry"

Phin rides into surgery like a king

Love-N