Friday Day +2:

John spent the night with him Thursday and was with him Friday all day so I will let him share how that went. 

Friday night: I spent the night with him and around 945 pm he vomited. It wasn’t too gnarly as it was with high dose methotrexate, but he hadn’t vomited in a couple of days so I wanted to think about why now? 

It turns out that he’d only had 1 dose of ativan at 9:15 am plus another dose of Olanzapine (which is a 24 hour acting anti-nausea med).  I thought we were “layering” benedryl and ativan every 3 hours to “be ahead”of the nausea. It seems like each medical provider has her/his own POV about anti-nausea meds and Sam also has his opinions, based on his experience, as he should. So they’d changed the plan to “on demand” anti-nausea medicine for ativan and benedryl as Sam was wanting to be more awake (and both of those meds make him more sleepy).  I’m happy that he is thinking about his medicines and involved in his medical care. He definitely deserves an undergrad degree after all the learning he’s done!

Friday night, after the vomit, they set up the TPN system. TPN stands for Total Parenteral Nutrition and it bypasses the digestive system entirely and goes directly into the bloodstream, where the nutrients are absorbed. The solution is given through a catheter that has been placed in a vein, in Sam’s case, his Hickmann line (it has 2 tubes, or lumens: 1 for the TPN now and 1 for other medicines. Currently his original port is not accessed/operational).  The Hickman goes into his jugular vein. 

Sam has 2 bags for his TPN: 1 has dextrose plus some electrolytes and the other, milky colored bag, has lipids. I’m not sure where the proteins are coming from. Need to ask at rounds tomorrow.

Saturday Day +3: 

It was an uneventful night and Sam woke up and started playing Overwatch and I headed to Cubberley to watch Zack’s Blue Team play the team that is ranked 2nd in Northern California at the State Cup tournament. And we were down 2 of our main players due to spring break, too so every player counted more than they usually do.

It was probably the best game I’ve seen so far from our team — everyone came together and played a key role and they triumphed 1-0!  Great way to start the weekend!

And this would be the first of 4 soccer games Zack would play this weekend: 3 on Saturday and 1 on Sunday ⚽️. He loves to play and the other teams were down players do to spring break so there was lots of opportunities (and Palo Alto Soccer club has 6, maybe 7, teams for his age group ?!?!?!? Wow. )

Sam had a good day — he decided to have 1 dose of ativan in the AM and 1 in the evening before getting his oral meds. His oral meds can provoke the vomit reflex so I think this was is a great plan.

He and John played Mario and  I spent the afternoon with Zack and then John, Zack and I met up for dinner while Sam played Overwatch at the hospital. All of us are finding our rhythm and that’s involving some time for Sam to be at the hospital by himself, which he thoroughly enjoys (right now, as I’m writing this, he’s asking me/prodding me about when I’m going to the Cal Ave Farmer’s Market 😂)

I spent the night last night and we watched Narcos: Mexico, which is our routine. Sam has watched it before and I appreciate having him to remind me which plaza we are watching and which family is doing what (it’s a very good show — lots of violence though but well acted and super interesting. Historical fiction. And *tons* of characters so glad I have Sam to guide me 👍🏼).

Oh, in addition to the TPN, he continues to eat bananas (go banana!) and John found a great protein at the Cafe so he’s drinking 1 of those per day. The hope is that those foods will keep his digestive system  engaged, while not overloading it (because the conditioning meds did do a number on his intestinal villi and linings of all the GI tract 😞) — and both these avenues will provide nutrition for his immune system as it recovers, with the TPN providing the majority of his calories for now (until his immune system reconstitutes and can kick out the bacteria that are causing the inflammation in his GI tract). 

On to Day +4!

#FULeukemia

#LFGStemCells

#TeamSamStrong