TUESDAY TUESDAY

WELL, Sunday sucked. 

Eli didn't have much of an appetite on Sunday, which was to be expected. Overall, he was just feeling weird. Fortunately, this dose of treatments only happens once every 5 weeks and he'll do 6 cycles total, so Round 1 of Cycle 1 is over. Ding Ding.

Monday he slept a lot and ate a little. It's hard when nothing sounds good. I was able to get him to eat some sourdough toast and a popsicle and one of sister's chocolate chip cookies.

Tuesday he ate a little more - toast, apple, popsicle and some protein shake. He's usually a pretty good patient, but lack of food and energy was making him grumpy. He did eat some Chick-Fil-A nuggets and fries Tuesday evening and hung out with his favorite person. I could tell he was starting to turn a corner last night.

He's been sleeping well though and isn't in any pain in his leg or chest after the port placement procedure. He hasn't needed any pain meds since last week and only had Tylenol in his IV on Friday and hasn't needed anything since.

We had our post-op appointment this morning. His leg has been wrapped and in a brace since the bone biopsy with clear instructions that the orthopedic surgeon would be the first one to look at it. I started spiraling while we were waiting, worrying about all kinds of things since it's been 13 days, so I was really relieved that everything is healing nicely and looks good. He will still wear the brace for support, but can take it off now to move and bend his leg and he can shower! He said he was actually hungry as we were leaving and ate a cheeseburger on the way home. Don't judge.

The final pathology report is back from John Hopkins and the bone/soft tissue expert agreed with the St. Lukes pathologist that Eli has telangiectatic osteosarcoma (TO) and that it is Grade 3 of 3. If osteosarcoma is rare, then telangiectatic osteosarcoma is even more rare, accounting for between 3-12% of osteosarcoma cases. What the actual f-word. Special Teams, Special Players, Special Sarcoma. The orthopedic surgeon has removed several osteosarcoma tumors, but this is the first TO case he has seen. He is recommending (and we agree) sending to Huntsman Cancer Institute in Salt Lake City for second opinion. Hopefully we can get in touch with them soon to discuss our options and to find out if they would do anything different. Huntsman has oncologist/surgeons that are specific to osteosarcoma. I will drive to the ends of the earth if I have to. 

Source: Teleangiectatic Osteosarcoma Info

We also met with Eli's school counselor last night and he chatted with Eli a bit about everything that he and Eli's teachers will do to make sure that he is able to finish the current semester and complete his core classes, but then he will begin the second semester just doing online learning. It is just too risky to send him to school and possibly fracture his leg or get sick and delay treatments. I know he'll miss the social aspect of school, but that's been the furthest thing from our minds lately.