SURGERY + HEALING + MOVING ON (PART I)

Our bodies provide some amazing protection in times of stress. I can tell that my body has been in fight mode. Eli's body has been fighting for months.

I hadn't eaten much in about a week after New Year's Day. I wasn't hungry and my appetite was non-existent. Turns out stress is an appetite suppressant. I kept waking up at around 5 in the morning feeling like my heart was on fire, full of adrenaline, ready to run.

This was a rough week in so many ways. Sometimes your body betrays you. Sometimes a nobody betrays you. But there are life lessons in everything and something that I have realized is that the Parker kids are resilient, strong, stubborn and determined with a fighting spirit that makes me proud to know them every. single. day.

Saturday night we got dinner with friends and all of the kids for a much needed night out. Eli hasn't seen everybody all together since he was diagnosed.

2025 is a year full of change for our family as we all move forward in realizing who we are, knowing what we want and what we don't want. Bella and I spent a lot of time together, engaging in some retail therapy and a trip to our happy place - the book store. The one thing about my daughter, is she knows who she is and who she isn't. She's also learning who she is becoming. I love her confidence.

I woke up on Monday feeling like the countdown was on. We had a referral to the Ronald McDonald House in SLC, but wouldn't know if we had an actual room until the day before, so I booked a backup hotel just in case. We also wanted to rent a car so that Eli would be comfortable on the return trip. I knew I needed to get a lot of work done so I plugged away and cried at my desk like a literal faucet all day, drippy with emotion. 

Eli started online classes on Tuesday. He will have science and history for the first quarter and then math and english the second quarter. His teachers and counselors are fully aware of his situation so he'll just have to communicate when he can't attend the virtual lessons.

I got the call Wednesday that we had a room at RMH and we hit the road at about 4pm and made good time. We were grateful for dry weather and clear roads, especially this time of year. We got settled in, got something to eat. I think I slept for a couple of hours and then was up the rest of the early morning until we needed to leave in time for the 5:45am check-in time.  

Primary Children's Hospital was just a 5 minute drive up the road and we got checked in. The team started making their rounds not long after - nurses, anesthesiologists, IV nurses and finally the orthopedic surgeon. I finally found a sense of peace after we talked to Dr. G and pretty soon it was time for them to take Eli back to the OR. I was finally able to eat something and felt hungry for the first time in days. 

The hospital has a Ronald McDonald "Family Room" which is essentially a lounge with comfy chairs, couches, kitchen, dining area, laundry, nap space and showers. This space helped provide a less clinical waiting area for the 9 hour surgery. The OR nurse called every two hours to give us updates on his vitals and the procedure. We got regular reports that his vitals were strong and stable and that he was doing amazing. At around 3pm, we got word that Dr. G. was finishing up and we could head down to the PICU waiting room. We spoke with him at around 5pm, went over everything, asked a lot of questions and he sent me pictures. The bone and bone tumor was O-U-T! 

We got to see Eli as he was not quite awake from surgery. What a relief, but I think I would have preferred him a little more awake. It took him a little longer to come out of it, and then he was shivering for quite a while despite a mountain of warm blankets. He started opening his eyes more. One of the first full sentences he muttered was "Dr. Groundland is a G!" and other sweet sentiments about missing his girlfriend. 

One of the nurses said "we're gonna need a new brain", in reference to the pole with all of the computers on it and Eli sat up alarmed and said "Whhaaatttt? I need a new brain? Haven't I been through enough?" We were dying laughing realizing his confusion and concern.

He currently has a nerve block into his groin with lidocaine and a PCA pain pump with dilaudid and some other things on board. He got some valium to help the muscles relax. 

This is the hardware that is now in his leg. One of the challenges during surgery was the titanium rod that is placed down into the tibia was not fitting right because Eli's tibia isn't fully straight so that took some extra time. Then the metal hinge "knee" sits on top of a plastic piece and is anchored in place by the compress implant in the femur, where they created a space for it to fit, anchored by some pins that screw in to the bone. There are a series of washers that are tightened to a specific torque that will create bone hypertrophy, according to something called "Wolff's Law", which states that bones will adapt and cause the spongy bone to strengthen and grow onto the implant. This process takes time for the bone to achieve osseointegration and the bone growth will be slowed down by chemo. 

Eli's vitals have stayed pretty stable post-op. His nurses have been super attentive. His blood pressure dipped the first night so he got some extra fluid. He was able to sleep for a four hour stretch and I guess I did too. We were up pretty early as the PICU is not a very restful place, which is to be expected with so much going on at all hours. I was grateful that I got to stay with him because we weren't sure if that was an option.

He got some x-rays Friday morning and ate a couple bites. Then we got transferred to his room on the third floor, which was a little more private. He stayed awake most of the day, taking some naps and watching football. 

He had a mostly restful night Friday night and slept a lot. The balance is that we want him to sleep but then he isn't aware of the pain and isn't pushing the pain button so then he wakes up and we have to get on top of it again. They are also giving him some valium for any muscle spasms, since some muscle was removed where the biopsy tract was performed. We woke up to snow on Saturday morning. He ate a few bites of breakfast and napped for a bit.

He was able to transition to oral pain medication now that he is able to tolerate food. PT and OT stopped by at around 2pm to work on getting him to be able to sit on the edge of the bed. They were a really sweet team and helped him get all kinds of things done. Sitting for just a couple of minutes was enough and he returned to a comfier position. He is currently taking a combination of valium, ketamine, tylenol and oxycodone. He ate some dinner and watched the Chargers lose. We had a situation with his IVs and a little IV infiltration and his hand swelled up like the hulk. It was a bummer because they should have been able to access his port, but we had some disagreement over what exactly they should do.

We should be here for a couple of more days. We were told to plan for five and want to make sure that his pain is managed and recovery is underway and he is able to get out of bed and move. We will forever be grateful to Eli's surgeon and everyone who has cared for him round the clock. Thursday was so rough and the messages of love, support, care and spiritual uplifting kept us on track. 

I will post another update once we are home and settled in.