Rock Bottom But Climbing

Cycle 5 began at the beginning of the month, but this was his first outpatient treatment and involved going to the clinic back-to-back days on 4/3 and 4/4 for the infusions. I'm starting to feel the same as Eli and I don't want to say the name of the toxic drugs anymore.

His port was accessed, but the nurse was struggling to draw blood and when it came time for the infusion, she wasn't able to check blood return although the port flushed just fine. Checking blood return is important because it means that the catheter tip is seated correctly in the vein, that there is no blockage and that the chemo is going where it's supposed to. It's especially important for this drug, which is a vesicant and can destroy tissues if not going directly where it should.

I was a little nervous because they had already given the pre-chemo drug to protect the heart and only have a small window to complete the infusion, but the nursing staff was clam because they’ve seen this before. They explained that over time, a fibrin sheath can form over the tip of the catheter, so fluid can go in but then suction will cause it to stick, kind of like drinking a strawberry milkshake through a straw -- you can blow a bubble through the straw, but when you try to suck through the straw, you can't get anything out the opposite direction.

The solution was to put something called TPA in the port line to help dissolve the protein build-up and let it sit for 30 minutes, and while this helped a little, blood return still wasn't great, so he got some more TPA that sat in the port overnight to help dissolve it further. 

When we returned the following day, the nurses celebrated the beautiful blood return and the absence of any blockage. 

This drug is the one that tanks his counts the most, usually on days 10-14. We went to his team's baseball game after because it was #EliStrong night. His team and our bestest friends put together a sweet pre-game ceremony to encourage and uplift him in the final stretch of this fight.

The nurses at clinic got him a sweet little gift as well.

On Saturday he went out on a fancy date with Riley. On Tuesday, he turned 17 and blew out the candle in a stack of pancakes. He wanted to go to his baseball game and chose Texas Roadhouse for dinner as long as we didn't tell the server it was his birthday and didn't make him sit on the bull. 

We saw Dr M. on Wednesday 4/9 for his 12 week post up and somehow 12 weeks doesn’t seem like all that long ago, but yet so far away at the same time. Eli doesn’t have any pain so no X-rays were ordered. We went over some exercises he can do to strengthen his quad and covered how dangerous of a setback a fall would be. Eli was wearing an AC/DC shirt and Dr M asked what his favorite song was, probably thinking he'd trip up a kid wearing a band t-shirt he knew nothing about, not knowing that Eli used to bust out Back in Black on the drums. Dr M's favorite AC/DC song is Thunderstruck. We have a follow-up appointment scheduled for the second week in June to do x-rays after chemo is FINISHED!

We had a clinic appointment on Thursday 4/10, which turned into a blood transfusion because his hemoglobin had dropped to below 7 and his ANC was at .26, so he was also neutropenic. We were given the option to do one bag at clinic and come back the next day for the second bag, or go upstairs to the hospital for this procedure and Eli begrudgingly chose that option. He wasn't happy and I don't blame him.

The rest of the week and weekend were mostly uneventful and I didn't let him go to any games, but Sunday he mentioned that his throat was starting to hurt, which turned out to be the beginning of another case of mucositis. We are so close yet it still seems so far. For so long it felt like smooth sailing and now it feels like stormy seas. I guess all we can do is brace for the crashing waves and endure being tossed around by forces beyond our control knowing that this is a temporary deluge of nastiness overhead, but at some point, we will be spit out of the torrent.

I called the clinic and we came in and he was admitted. His ANC had dropped to .04, the lowest it's ever been. I was just waiting for him to spike a fever, which he did the next morning - 100.9, so they drew blood for cultures. His hemoglobin had dropped to below 7 again so he needed more blood. He got a neupogen shot to encourage neutrophil production but it only raised his counts to .06. His fever was gone by Wednesday and his counts had gone up slightly to .09. We talked to Dr. V who explained that his neutrophils have probably gone elsewhere in the body to mount the defense that they are supposed to, and therefore there aren’t many left when they go to do a peripheral blood draw. He got to visit with Panther, the emotional support dog and he indulged on Chick-fil-A milkshakes and had two on Tuesday and I made him some mini pancakes.

We were encouraged by elevated counts Thursday morning -- ANC jumped up to 1.2 from .09. His cheek was hurting a little more so he succumbed to the magic mouthwash regimen, but his fever was gone and his throat was feeling better

His counts were high enough to go home on Friday and he had stopped his IV pain meds, which was perfect timing because everyone was trying to get him out so he could enjoy prom on Saturday.

Being able to feel like a normal teenager was the perfect medicine and just what be needed to go back to the hospital on Monday for the second to last treatment of Cycle 5.

Counts were good enough to be admitted on Monday morning and he had a pretty good week with nausea under control and a great appetite. He got to visit with Panther again, who always puts a smile on his face. He cleared faster than he’s ever cleared before and by Thursday afternoon, we broke free of the tubes, machines and beeping sounds and got to go home sweet home.

This has been such a rough month and the doctors gave Eli the option to come back on Monday or delay until Friday. It doesn’t set us back much to take couple of extra days off so he chose the Friday option. I think this should work out pretty well for Bella’s graduation. The plan for Cycle 6 is to give him the neupogen shots at home after the doxo treatment to prevent such a drastic drop in white blood cells and prevent the neutropenia, which will then hopefully keep his immune system strong so he doesn’t get mucositis and end up hospitalized again. We are almost there!! Four more treatments and only 3 more stays!