ONE and 1/3 INNING DOWN + POST OP APPT

Eli has continued to feel good. We saw the orthopedic surgeon for a follow-up appointment on Wednesday. We parked the car and Eli looked down at his feet and said, "I was gonna put shoes on". All he had was socks. If you know Eli, he loves to go outside in just socks. No big deal. Short sleeves in 30* weather, probably neutropenic, but the sun was out. This is my life. Sometimes there is just nothing I can do. 

We discussed the surgical option for the area of connective tissue where the tumor is bulging and Dr. M. said that we have nothing to be concerned about with this part of the surgery. That was something we hadn’t discussed previously. The tumor that is extending into the connective issue isn't near any major blood vessels/critical structures, and it is mostly just in fat, not muscle, so they will just cut around it. Sometimes the LSS (limb salvage surgery) can leave the muscle part of the leg with a sunken appearance if they have to take a lot of tissue out, so that was a positive. The surgeon said that Eli looks really good for somebody going through chemo. He commented that of all the kids that he has seen with osteosarcoma in his career, Eli looks by far the healthiest, strongest and that it doesn’t seem to be making him too sick/weak, so that was good to hear.

We have a date for surgery - the second week in January. Exactly one month from today. It makes me want to stop time. A cancer diagnosis is challenging in various ways - mentally, emotionally, spiritually, physically, financially, etc. One of the hardest parts is how quickly everything moves once you find out. All of a sudden you are spiraling forward at breakneck speed on a timeline that is not your own and moving at a speed out of your control. While you are processing the emotions surrounding it all, you have to find the time and energy to get to all of these new appointments: MRI, CT Scan, bone scan, PET scan, hearing test, fertility appointments, bone biopsy surgery, port placement surgery and then you are throw into chemo treatments 2 weeks later. But it doesn't end there with osteosarcoma. You have to make insane decisions about surgery in a very short amount of time, deciding whether to preserve a limb or opt for a prosthetic. I heard a phrase the other day in the osteosarcoma community - "Life over Limb". 

We had our regular clinical appointment on Friday to check counts. He had previously gained back the 10 lbs he lost after the very first treatment mid-October, but he is up another lb at 78.4 kg, which is almost back to his before cancer weight of 79-some odd kilograms. We anticipated the lowest counts of this cycle so we weren't surprised when Eli's ANC was 60. Down from 6850 two weeks before. He has to be back up to 250 by Friday. This is the last week break before treatment resumes with two back-to-back MTX weekends. 

None of these treatments are my favorite, but I dread the long ones. It's a long stay, hooked up with a bunch of tubes to a bunch of bags. Eli has decided that he doesn't like seeing the bags hanging on the pole and he also isn't a fan of the lobby in clinic, so last week we didn't get there the recommended 15 minutes early and nobody noticed, but we have to return to the lobby after his port is "accessed" to wait for the blood work. This treatment we are going to get up and out of bed and go for more walks to keep everything moving. Hopefully this will help with any headaches or chest tightness. It's easy to want to just sleep through treatments to make the time go by without having to think about what is going on, but lying down for multiple days in a row hasn't proved to be a good idea.

Without any unscheduled delays (assuming counts are where they need to be Friday), we should begin the last treatment of Cycle 2 on 12/20 and come home early that Tuesday, which is Christmas Eve. Then we will have a break until surgery and should resume treatment two weeks post-op. Once surgery is finished and the tumor is removed and reconstruction complete, we might be able to feel some forward progress. It's going to be a long road - physical therapy, learning how to walk with the new hardware, pain management, post-op visits, etc. All of this metal is why high impact activities will be mostly out. Running and jumping risks the hardware coming loose and just doesn't have the same absorption of a biological knee, but swimming and biking and other low impact activities he will be able to do. 

This is what his femur/knee replacement will most likely look like:

Source

We've been dealing with the Boise "inversion" for several days. The dense fog has rolled in thick and heavy with temps in the low 30s, upper 20s. It has frozen all of the winter foliage with ice. Our neighborhood has been a winter wonderland of white. This diagnosis is thick and heavy, but the fog dissipated a little yesterday with the promise of blue skies and sun and I know that this winter, this fog, these low temps, this season of weather and life are temporary. 

As 2024 starts to wrap up, I am ready to part ways and get underway with 2025 and close this chapter so we can start working on the sequel.