RECOVERY + DAY 3/4/5 (PART II)

The first day (Friday) in recovery seemed to go well and was mostly about finding the right balance of pain medication and trying to get him to eat a little food and drink some fluids and settle in for the night. He had three IVs, one in his foot and two in his right hand and an arterial line in each hand as well. On Friday night he got a dose of valium to one of the hand IVs and it caused a lot of pain. The same thing happened the next morning. Valium stings when going in anyway, so I think the pain was overlooked. 

The day nurse was unable to flush the IV or get a blood return for lab work and his heart rate had been elevated all day, increasing into the 100s and staying there, bouncing between 100-115 and jumping up to 120s. She called the IV team to see if they could see what was going on and they noticed right away that his right hand was super swollen and that there had been an IV infiltration, where the fluids stop going into the vein and start collecting in the tissue. He had been getting other pain meds into this line as well so it was definitely concerning. He also started to get an elevated temperature. None of these are great signs but it isn't uncommon for tachychardia (resting heart rate over 100) to occur post-surgery. They wanted to rule out any other issues so Eli got a chest x-ray (lungs look great), and an EKG (heart looks great) and a blood & urine culture and some other labs. The pediatric doctor made a visit and assessed him and said other than the heart rate and temperature, he looked and sounded really good. We finally got some sleep a little after 1am and had a pretty restful night.

Sunday morning, PT came by again with a walker and a goal to get Eli to stand up out of bed and maybe take a step. Other than briefly sitting on the edge of the bed yesterday, he has not been up at all. This turned out to be too ambitious of an ask because after the first step, he got light-headed and I had to hold him up while he briefly passed out until we got him seated again. He definitely should have eased into this a little more slowly.

He can't bear any weight other than a toe touch for six weeks and then we will do x-rays again to see how it is healing. He will resume chemo in 10 days and that will slow down bone growth and healing. After the six weeks he might be able to bear a little more weight and begin more PT.

The Ronald McDonald House lounges are on a three different floors and provide different amenities. I got lucky and scored an unoccupied washer and got a load of laundry done. It is really such a nice added service. I will forever round up at McDonalds. The main lounge also provides meals twice a day that are prepared by volunteers for families with children receiving treatment at the hospital. The cafeteria and room service is pretty good as well and Eli has actually been eating what we order for him.

Late Sunday the IV in his left hand started to fail, but his night nurse caught it early. The IV team was called up again and started a new one in his forearm and removed the one from his foot. He got another EKG and everything checked out with his heart, despite his consistent elevated heart rate. He woke up to the sweetest card left by his night nurse with a Door Dash gift card. She wrote the most thoughtful and encouraging words to Eli and it made both of us overcome with emotion. He was hungry for food Monday morning and has had an insatiable appetite for fruit, specifically strawberries and pineapples. 

Dr. G made a visit and we were happy to see him. I will forever be grateful to this man and his surgical abilities and kind heart.

Dr. G. showed us Eli's x-ray. This is the compress mechanism that has replaced the femur/knee.

And here is the x-ray of Eli's hardware:

He got to keep his kneecap, which is over the metal.

Then there is a tibial stem that is fitted down into the center of the medullary cavity in his tibia to anchor it in place.

The tibial stem isn't 100% anchored in place and will allow a little swivel motion.

Richard is flying back to Boise tonight. Bella has been holding down the fort like the boss babe she is. I think Eli and I should hopefully get out of here by Wednesday. We are decreasing his dose of ketamine and will disconnect the IV catheter with the lidocaine tomorrow. 

This journey is not over and could be full of twists and turns, but there is nobody that I would rather navigate this bumpy road with other than our circle both big and small. Eli has had such an impact on everyone that he has come into contact with. He is such a strong fighter and his tenacity, resilience and determination shines through as he overcomes every obstacle, no matter how great. He has risen up time and time again and if he can't do something the first time, he challenges himself to try again or stand for a little longer, fight a little harder. He expresses his thanks multiple times a day for everything that he needs help with. He talks about how he wants to be a dad someday and all of the people that he wants with him when he gets to ring the bell. Sometimes this cancer doesn't feel real. Most of the time it doesn't feel real that it has happened to us. I am so proud of Eli everyday and grateful that I get to raise my hero.

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.

CT, MRI + MAYO CLINIC + FIESTA BOWL

Came to Arizona to go to Mayo Clinic, stayed for the Fiesta Bowl!

Eli had a clinic appointment on Friday afternoon and then straight to a CT scan and MRI. The CT scan didn't show any changes and still NO evidence of metastasis anywhere else in the body and most importantly, nothing in the lungs. As I've mentioned before, osteosarcoma often metastasizes through the blood stream and shows up primarily in the lungs. The MRI included his entire femur this time. The imaging scans and report loaded into his chart within a few hours.

Graduated to a cane.
MRI-ready.
Magic 8 Ball says Eli is going to be fine.

Eli and I flew to Phoenix on Saturday for a 3rd and final opinion regarding his case and surgery. When we first met with the surgeon at St. Lukes he said to seek a 2nd and 3rd option at Huntsman and Mayo Clinic, so that's what we did. We were supposed to come the week before in between the last two treatments, but it ended up not being the best timing and we rebooked. Mayo Clinic was awesome at getting us scheduled quickly and requesting all of Eli's scans and reviewing everything with their sarcoma team.

It was a quick flight and I was the mask police. We shuttled it to the rental car place and picked up our ride for the weekend and made our way to Scottsdale. Nothing beats Arizona winters and the sunshine and blue skies were a much needed change of weather.

Eli had all of his favorite meals planned out.

We found a fun little milkshake place in Old Town Scottsdale called Shakes & Cones.

Eli's initial PET scan showed a hot spot on his right external iliac lymph node. The report said that it was indeterminate for a reactive node or a metastatic lesion as it had a mild uptake of the FDG tracer, but not really enough to suggest it was cancer. I tried to put it out of my mind, figuring that it was probably reactive due to the bone biopsy he had 7 days prior and all of the trauma happening in his leg. The plan was to wait and see what it looked like after the first two cycles of treatment. The follow-up PET scan showed a decrease in size and reactivity, but I wasn't sure if this meant it was okay. We had a biopsy tentatively scheduled with the Mayo Clinic in case it still showed up as a concerning spot. 

We didn't have anything going on Sunday so we got some lunch and went to a movie and I got to visit with my best friend who lives in Arizona.

Monday morning came super early and we headed 10 minutes down the road to the Mayo Clinic. I was nervous.

We started with some x-rays and then met with the orthopedic surgeon to review all of Eli's scans, discuss surgery options, outcomes, expectations, all the things.

The MRI noted some edema (fluid) in the bone marrow, but less than there had been on the initial scans, but NO evidence of any skip lesions and the proximal (top) of the femur looks good with the rest of the bone looking healthy. His growth plates are pretty much fused, at least the important ones, so he should be done growing, which is good because we don't have to worry about taking any further steps to lengthen the metal replacement at a later date because his legs are different lengths. 

The two surgical options are a stem implant and a compress implant. The stem implant would require carving out a space in the middle of his femur to anchor the implant in place with bone cement. This would take up about half of his femur and if he needs revision surgery in the future due to infection or aseptic loosening, more of his bone would be compromised. If he had multiple surgeries, then he would most likely end up with a metal femur at some point. The other option is a compress implant, which is maybe a 1/4 of the length of the stem implant and does not require as much bone. The implant is compressed into place by a tightening mechanism and a series of washers that encourage the bone to grow onto the implant. 

Chat GPT made this helpful little chart of the pros and cons:

In addition, the compress implant has an early risk of failure if the bone fails to achieve osseointegration. Eli would have to stay completely off of it and not bear any weight for the remainder of treatments, so 5 months or so while the bone is growing. Then he would begin PT and rehab to learn how to walk again. By comparison, the stem implant is secure right away and Eli would able to walk immediately, but this option has a risk of loosening later. Both options come with a risk of infection, especially because chemo starts up 2 weeks post-op. He would have to get antibiotics before dental treatments and make sure he stays on top of his oral hygiene since that's a common way to introduce infection into the bloodstream.

Both Dr. Gs said that they would prefer a compress implant in Eli's case since the tumor is so low in the femur. This way a lot of his bone is preserved. They are also in agreement that the tumor is so close to the knee joint and it is not possible to remove the tumor and feel confident in getting wide enough margins. So, Eli will be having a joint sacrificing limb salvage surgery and not a joint preservation surgery. Dr. G. showed us what the compress hardware looks like and Eli was able to hold it. We have opted to do the compress implant procedure.

She had Mayo Clinic read the imaging scans and provide their own reports as well as the initial tissue pathology. They are in agreement with all of the findings. She commented on how strong Eli is and how strong his legs are and that his athletic background is an advantage. He hasn't lost any real muscle mass and still has great range of motion and flexibility. He might lose a little muscle with surgery, but she confirmed that the tumor isn't near any critical structures. She also noted that the tumor has shrunk significantly where it was growing out of the bone, which is something she doesn't see often and probably because it is the telangiectatic variant that we've been told is more responsive to treatment because it is so vascular.

She was also pleased with the updated scan of the lymph node and informed us that the shrinking and decrease in uptake was a good sign and that is is rare for osteosarcoma to spread through the lymphatic system. A metastatic spot wouldn't have responded in the same way as the lymph node did. SO, no biopsy was needed. Our flight was scheduled to leave at 5pm, buuuuuut we were already in Arizona annnnnnd we now had extra time on our hands and the good news of for sure no metastasis soooooooo, we made some changes to our flight, switched hotels, extended the rental car reservation and got tickets to watch Boise State in the Fiesta Bowl. 

The game didn't go the way we would have liked, but we've learned that sometimes life doesn't go as planned. Sometimes things surprise you and you have to handle the set back and get back up and keep playing. Even when you get knocked down, even when the blows just keep coming, even when the unthinkable happens and shakes you to your core. 

Eli is looking forward to surgery. He is excited to get this tumor and diseased bone out and mentally move forward knowing that the cancer has been removed from his body and he can begin the road to recovery. 

2025 is going to be a great year. 

Eli is going to ring the bell in 2025.

WEEK 10 + CHRISTMAS + PET SCAN

October seemed like we were stuck in slow motion and November and December have flown by. I have mixed emotions regarding the next six months. On one hand, I want them to fly by so that we can get beyond this and I also want to slow it down because it's Bella's last 6 months of high school. I guess the solution is just to live in the moment and be intentional with the time that we have. Time is going to do it's own thing, marching on minute by minute, day by day, month by month.

Thursday night Eli watched the Charger game on the couch with us and then went on a freedom drive by himself, windows down, music up, the last night of feeling normal for a few days. I realized the other day that he won't be able to drive for a long time after surgery while he recovers and adjusts to the new hardware in his gas pedal leg. He had started to get a little bit of a headache again after the MTX treatment, but not as bad as the previous week so he took some meds Thursday night.

Friday morning came early, followed by a somber ride 10 minutes down the road to clinic and we were there. I'm grateful that we live so close. It makes it convenient to not have to wake up earlier for drive time and we can run home and back, as needed. I'm also grateful that we haven't had a particularly wet winter and aren't having to navigate driveways and parking lots with snow and slippery conditions. 

Counts were good on Friday - platelets 177; neutrophils 3830, up from 690 the week before. We got settled in and I grabbed some lunch. 

One of the hardest mental parts of treatment is the transition between arriving and feeling good, beginning fluids and then starting the chemo that inevitably is going to make him feel awful a few hours later. He's been facing feeling disgusting the last few MTX treatments and he got all the nausea meds again that kicked in late evening and he was able to sleep. 

Saturday he got up and went for a walk with the physical therapist to try out a cane, instead of using the crutch. He liked this much better and we got one ordered for him and delivered to the hospital. He really wants a pimp cane, but insurance doesn't cover those. He wasn't too hungry Saturday during the day and snacked on some fruit late evening and some french fries. He fell asleep and slept well. 

I passed the time by catching up on some work stuff most of Saturday and making some lipgloss keychain gifts for the nurses. 

Saturday night I traded places with Richard and went home and wrapped some gifts. Eli's MTX level was 2.19 after 24 hrs, which is the fastest he's cleared yet. I didn't want to get my hopes up that his levels would be low enough to leave any earlier than we are used to. The headache that he had earlier this week never really went away so we tried some meds and some Tylenol Sunday morning. It helped a little. He didn't have an appetite on Sunday at all, and usually he does.

Sunday levels were the lowest we've seen after 48 hours coming in at a .22! He's been battling some more nausea this time around and I think that some of it is being caused by anxiety. He is now getting anticipatory anxiety when we come to clinic, anxious when he knows we are going to be admitted, anxious for the next few months. Wondering how he is going to continue to come back and knowing that he doesn't have a choice is at the forefront of his mind. 

We redrew labs 24 hours later and he was at .11 - so close! They were hoping to get us out of there and ordered a redraw again at 10pm. The results take an average of about an hour to process, something about waiting for the blood to coagulate. He was closer, but .10 wouldn't be enough to show us the door. One more night in the hospital.

Labs were drawn again at 6:00am on Tuesday morning (Christmas Eve Day) and he was low enough (.08!) to go home. We wished our nurses a Merry Christmas as we ran passed the nurse's station. Once home, he bathed and spent some time on the couch, watching Elf and napping. Richard made tamales. I made cinnamon rolls so Eli could have one on Christmas Eve, since he couldn't eat any fun stuff on Christmas Day (day before the PET Scan = no sugar, carbs, starch, etc.). He finally got his appetite back after not eating for two days and ate a tamale and 1/2 a cinnamon roll.

His headache has been bad all week. The kids woke up around 9:30 Christmas morning and we enjoyed a relatively quiet and low-key Christmas this year. Put on a couple more movies, Eli played some video games with friends, took a nap, ate dinner, we played a board game and went to sleep.

Thursday we had an early appointment in Meridian for the PET Scan. I am grateful that this got moved locally due to a cancellation. Otherwise, we were going to road trip to Twin Falls, a two-hour drive and not something that Eli was looking forward to. Scan was completed and results were returned pretty quick and loaded into his chart. I popped in to the records office and got the images burned on to a CD. The report shows a decrease in metabolic activity in the tumor. We will know more once the report is interpreted by Eli's team, but the chemo is working.

For the PET scan, FDG (fluorodeoxyglucose), the radioactive sugar tracer, is injected andmetabolized similarly to glucose, being transported into cells, but unlike glucose, it cannot be further metabolized and becomes trapped within the cell, allowing the PET scanner to detect areas with high glucose uptake, which is often indicative of cancerous tissue due to its increased metabolic activity. Eli's tumor had an SUV uptake of 8.8 of the FDG on the initial scans in October, before treatment. Yesterday the uptake had decreased to 2.7. That's a pretty good decrease! I don't think we will truly know the necrosis percentage until after the tumor is resected (removed). 

We got lunch at The Habit after because Eli was hungry. Without going into too much detail, it didn't sit well. Poor dude.

He felt better when he got home and made plans to hang out with Riley, who really seems to get him out of any funkiness he might be feeling. 

Today we have a clinic appointment and then CT and MRI scans. Surgery is planned for 2 weeks from yesterday. I hope he enjoys these last few days of 2024, the year our world got flip-turned upside down. The beginning of 2025 is going to be a challenge, but once we get over the biggest hurdle, it's going to be so many steps in the right direction and the beginning of a new path forward.

BACK-TO-BACK MTX WEEKENDS

Most people look forward to Fridays. We are no longer most people. At least on some weeks. 

I woke up on Monday feeling like the countdown was on and the clock had begun ticking for the week. Instead of feeling relief with each passing day, I just felt dread. Dread that we were one day closer to Friday. On Monday and Tuesday I tried to get the tree decorated, but nothing feels normal and it had been sitting naked in the living room for weeks. I put some Christmas music on and slowly but surely got her all trimmed up. Nothing that a little John Denver's Rocky Mountain Christmas album couldn't fix! 

"Please Daddy (Don't Get Drunk This Christmas"* is a highly underrated Christmas song.
*Disclaimer: not based on real life events.

Our Christmas ornaments are my favorite because they are a collection of mementos from family trips and memories of the past. I am particularly fond of the ones that the kids have made at school throughout the years. As I hung each one on its chosen branch, I tried to reflect on each one, where we got them, what trip they commemorate, who gave us the special ones, how we collected them. I thought about who else might have a glittery Space Needle replica from Seattle, if anyone collected sand in a mini mason jar from Melbourne Beach, FL, who picked up a sugar skull from Old Town San Diego or brought home a fabric Scottish bagpiper from Scotland. Our Christmas tree is a history of us. When the kids were little we used to make crystal ornaments from pipe cleaners suspended in hot water and borax solution. I still have all of their little salt dough ornaments with their imperfect paint jobs, which are perfect to me.

Eli wanted to attend some classes on Thursday before school lets out for winter break. I was a little worried about low counts, but he wanted to go to a special Christmas lunch at Gamma's house and from there he attended his 5th and 7th period classes and stayed for baseball practice. He came home and reported that he had a really good day. I was glad that he convinced me to let him go. I think it was a little hard to be reminded of what used to be and how much his life has changed in a short couple of months. He would give anything to rewind. We have enrolled in online school for the second semester where he will take his four core classes, two the first quarter and two the second quarter.

He spent a lot of time playing his guitar this week and I enjoyed listening to him strumming some Foo Fighters. I got all of his pre-surgery scans ordered for after the holidays. We have the PET Scan scheduled the day after Christmas, which means Eli will have to get all his sweet treats and fun foods in on Christmas Eve since he has to avoid sugar & carbs the day before the scan. The MRI and CT scans are scheduled for the 27th and are conveniently being done back-to-back, so they will only have to access the port once. We are hoping for good tumor shrinkage. We want at least 90% tumor death. The tumor already has some necrosis because of the telangiectatic variant, which typically has a better chemo response, but I don't want to dive too deep or overthink what could or should be happening.

Friday morning came too early and fast. I have to apply a numbing cream to the area of Eli's chest where the port is located an hour before our appointment so I woke him up to do that. He gave some tearful goodbye hugs to Doozle, telling him that he wished he could come to the hospital with him for treatments. Maybe we can order Doozle a service dog vest on Amazon, but there isn't a chance that he could convince anybody that he passed, let alone attended, one minute of Service Animal School. 

I went over some paperwork with our Patient Financial Advocate. There is a program here in Idaho that we qualify for and it is not financial-based, but rather diagnosis-based and Eli's diagnosis qualifies for financial assistance, so we finally got the ball rolling on that. We've been told that we shouldn't have to pay much out-of-pocket for his medical bills. 

We had a bit of a rough go getting the port accessed and as the color drained from his face he said, "mom, I'm going to faint". Five minues later Dr V. asked him how he was and he replied with an enthusiastic "great!" - demonstrating that you really do have to fake it til you make it. He bounced back quickly and had gained 3 lbs since last week. Counts were good enough to admit, so we ate a late breakfast and got settled in. 

Eli had been watching some Instagram reels and laughing at a bear eating honey, so it was perfect that Richard walked in with a stuffed bear later in the day that looked the same as the bear in the video. Bears are strong and courageous and represent healing and resilience in a lot of cultures. Eli said that the bear is his spirit animal and he named him Burger. Burger is a hugger.

I traded places with Richard and went home to refresh, check on the animals and spend some time with Bella. I have a hard time being at home by myself. I feel like I'm just biding my time waiting to get back to Eli. I feel unsettled when I am away and don't know how he is doing or what is going on. When I came back, Eli was starting to feel a little nausea and just feeling gross so they threw a bunch of anti-nausea meds to target different nausea receptors and that caused quite a bit of drowsiness and he was pretty sedated the rest of the night. 

Saturday he slept most of the day, ignoring my multiple pleas to wake up, go for a walk, watch some TV. It's pretty typical to sleep through treatments, especially for teenagers. He told me I was annoying when I sat down near his bedside and asked him if he wanted to get up for the day, to which he responded, "sleeping is not a problem". He's also created his own form of sign language which includes waiving his hand and shaking his fists in anger when I won't stop making suggestions, asking questions and annoying him in various ways. I just know that he truly misses all of this togetherness when we go back home. So much so that I venture down the hallway to his room to lay in his bed while he asks me what I'm doing there and when I plan on leaving. 

His friends stopped by for a visit and hung out to watch the Heisman ceremony. They were all rooting for BSU Bronco Ashton Jeanty and I think there might have been some booing from room 4637 heard all the way in the Big Apple. He had a footlong Subway sandwich for his one meal of the day. He isn't limited to just one meal, but isn't that hungry until late afternoon. He then dozed the rest of the night away and into Sunday. His eyes are really dry, which is a side effect of the nausea patch and I'm sure it feels better to just be mentally checked out with eyes wide shut. His MTX level at hour 24 was 7.19, which didn't dip as fast as previous MTX treatments, but still <10. 

Labs were redrawn at 4:30 on Sunday afternoon and he had dropped to a .38 special.

Monday he had a visit with hospital PT and we got a stationary bike delivered to the room and had Jersey Mike's sandwiches for lunch. He was feeling much more alert and spent a bit of time playing the guitar. I could listen to him strumming forever. There were talks of a performance for the nurses, but it never got off the ground. :) Maybe he can put on a Christmas concert this weekend.

..."if everything could ever feel this real forever..."

..."if anything could ever be this good again..."

Labs were drawn again first thing in the morning and he was at the magic number of .09, but we had to wait for Dr. P to make her rounds and officially discharge us. Eli rode the bike and went for a stroll and then we broke free. 

It always feels like a freedom ride when we squeal out of the parking lot and we can finally inhale without smelling hand sanitizer. I made Eli two bagel sandwiches and some pancakes. He always looks so refreshed after a shower and some clean clothes and the freedom to walk around, untethered.

I had a call with Dr. G to finalize some surgery decisions regarding the endoprostethic reconstruction and the two different ways we can do it and the pros/cons of each. I think we know what our decision will be and I discussed with Eli last night so he can weight in on the choice. 

We go back for final neo-adjuvant (pre-surgery) chemo treatment tomorrow and home Christmas Eve morning and then a break until surgery. I am grateful that these almost 10 weeks have passed by mostly uneventfully. We are almost through this phase. 1/3 of the treatments are almost done. TGIF.

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.