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. 

GRATITUDE + CYCLE 2 + THANKSGIVING

Before Eli's cancer diagnosis, I was struggling for a period of months. Struggling with my kids getting older and worried about things that hadn't happened yet. It was depressing to look back at photos when they were kids. I felt like I was mourning their childhood. I was selfishly sad for myself, grieving my role as their mom, a position I felt was my quickly coming to an end. I was happy for them, but sad for me.

These past 8 weeks I have not been able to stop looking at photos of the past, cherishing every moment spent, every memory made. My biggest accomplishment is them. My greatest achievement is being their mom. I can’t remember what life was like before them and it is hard for me to envision a life without seeing them every day and knowing them like I know them now. 

I am grateful. Grateful that I get to know them and raise them. Grateful for the past, present and future. Grateful for their hearts and their scars. Grateful for the opportunity. Grateful for this life. Grateful for this time. 

Eli began Cycle 2 last Friday. Back to the doxo/cis combo. We went to clinic, his counts were really good, so we got a late breakfast before we got admitted and wheeled him up. 

Driving to clinic.

Getting settled in.

On these weekends he gets IV fluid, IV anti-nausea meds and then the doxorubicin is pushed by hand over 20 minutes. Then he gets cisplatin in an IV that drips over four hours. 

Christmas at St. Lukes

Day 2 begins the same dose. We got through the night and Eli spent most of Saturday sleeping through the second dose of treatment. I was surprised when the onc doc made her rounds in the morning and said that we should be able to go home later that day. This time he got a lot of different nausea meds, including a patch to wear for a few days. We left at around 8pm and he went directly to the shower and texted me that he was hungry so we ordered pizza and he ate 1/2 of a medium pepperoni. 

The next day he finished the rest and continued to eat well for lunch and dinner all week long, with just a couple of queasy episodes. 

I've been extra tired this week but we still pulled off Thanksgiving, but no Turkey. We aren't turkey people. My mom came to visit for the week. Bella cooked us a yummy chicken pasta dish the first night. She also made Eli's favorite part of Thanksgiving dinner - her signature mini apple cheesecakes. I didn't take many photos.

This morning we went back to clinic for lab work. Eli's counts are down and his neutrophils will probably continue to dip over the next week. He lost zero weight this time around (last time he did this treatment, he lost 10 lbs). Clinic staff actually seemed pretty impressed that he ate as well as he did and sustained his weight without relying on any liquid protein shakes. Some of the nausea meds helped stimulate his appetite. I try to make him smoothies most mornings with his breakfast and I add some of the protein drinks in them. He went to the movies this week and took a solo drive to bring his girlfriend a McFlurry. He's able to get back in the hot tub and has been spending a lot of time in the bubbles.

 Indulging me with endless selfies.

Hopefully this week is uneventful as we roll into December. We have another week off and then will finish Cycle 2 with two weeks of MTX. Then we will do some rescans right after Christmas and move forward with scheduling surgery. 

FABRIC + SPIRIT + SURGERY OPTIONS

I've been trying to ignore the enormity of all of this. At times I feel like I am running from reality by choosing to live in the moment, sometimes hour by hour, sometimes day by day. I suppose it's a coping mechanism to keep my head down and not look too far ahead. Sometimes the weight gets so great that all I can do is put one foot in front of the other. Right now, this feels like a marathon and not a sprint. But there are decisions to be made and all I want to do is procrastinate the hard stuff. 

One of the hospital chaplains stopped by during our last treatment stay to check on my spirit, which got me thinking a little bit more about what my spirit is made of. I like to think that the fibers of my spirit are woven with quiet determination and confidence, self-reliance and independence. The threads of my spirit bind together the various tapestries of so many pieces of who I am, even though sometimes I feel like I might be barely hanging on by one of those threads. The bones of my spirit are tough, providing a solid foundation of strength and courage for my family, but sometimes I do feel weakness in my metaphorical bones, just like Eli's physical bone.

The chaplain didn't represent any one faith. We discussed Eli's diagnosis and the weight of it all. She asked what I was doing to cope with the heaviness and I told her that I wrap myself up in the busy-ness of it all. She asked if I was a doer and I am for sure keeping myself and my mind occupied with all of the doing. She said that people fall into different groups with their grief responses and tend to be 1) feelers who sit with the emotions and find support in others 2) thinkers who research and analyze 3) doers who jump in to plan and problem solve and 4) dreamers who try to imagine that everything will be okay.

I am mostly a doer and a thinker, but at times I find myself identifying with each of these types of responses. The feeler breaks down every few weeks while the thinker joins osteosarcoma support groups online and reads survivor stories and researches surgery options and the doer packs bags, prepares meals, sets alarms and makes phone calls and the dreamer has hope that there is life beyond the diagnosis, treatment and recovery. There is room for all of it.

I haven't gone into too much detail about the decisions we have to make with surgery. The tumor is very close to the knee and because the surgeon has to get healthy margins, he is not sure how close he can get while still keeping the knee intact. We will get a clearer picture when they do the final re-imaging scans before surgery to see how much the tumor has shrunk and what the bone looks like at the knee. If there is any risk of malignant cells or a possibility of not getting all the cancer, then they will have to take out the knee as well.

If that's the case, then Option 1 is a megaprosthesis, which consists of a titanium rod in place of the affected femur, a metal hinge/knee that rests on a plastic shelf on top of the tibia and a metal peg inserted down into the tibia bone. The pros are that Eli would have a normal looking leg on the outside, and a functional knee that can bend and rotate, but would not be able to do any high impact activity like running or jumping. There are risks of infection because there is so much metal in the body and bacteria that attaches to metal is hard to treat with antibiotics. He would be able to walk right away, but healing would be slow and affected by chemo, which starts up again 2 weeks post-op. The cons are future surgeries as equipment fails or wears down maybe every 10 years. 

Option 2 is a rotationplasty, which basically removes the affected lower femur, knee and upper tibia and takes the lower half of the leg, turns it around and attaches it to the thigh. The heel becomes the knee and the ankle becomes the knee joint. The foot becomes the tibia and a prosthetic can be attached for the remaining leg/foot. The pros are that he would retain all of the nerves and all of the parts would be his own body, so the potential for infection and complications go down. He would actually have more mobility and function with this option and be able to play sports, after a lot of physical therapy and rehab. Eli does not want to do this option. 

We got through the first chemo treatment, got through feeling nauseous, got through losing hair, got through being neutropenic, got through the second chemo treatment, but it's this third chemo treatment that is starting to make me realize how real and life changing all of this is and how hard on the body it is becoming. He has had a headache since Saturday. His chest is feeling better. We have an appointment tomorrow to check counts, which should be high and then we will admit for the first round of Cycle 2. Fortunately, this is a shorter stay and we will be home Sunday. Then we have two weeks off to recover. My hope for this round is that we have a better nausea plan in place going home and that he has a nice long two weeks before we do the MTX again. My mom is coming up for the week of Thanksgiving and I am really looking forward to seeing her and doing some puzzles together. 

Eli's baseball team worked on this amazing quilt that he can use during treatment. Each gray square has a message from his teammates and coaches and it was lovingly quilted by the grandma of one of his friends. I know that he will cherish this forever. You never envision that you or your family will face something like this, but if you do, you want this kind of support squad behind you and standing beside you. 💛

BLURRED REALITY + CYCLE 1

I feel like I am existing in two realities and maybe that's how people feel when they are going through something like this. On one hand there is the hospital, appointments, treatments - a life that is very real when you are walking the halls of the hospital. Half of my current identity is so tied into living in the hospital for a period of days, anticipating Eli's needs, assisting with simple tasks to get him up and to the bathroom connected to all of these tubes, reminding him to brush his teeth when he is up, monitoring how much he is eating and drinking, forcing him to drink Sunny D (the jury is out whether this helps clear methotrexate faster).

Then we go home and it's mostly back to our regularly scheduled life - where this last week Eli seemed like a normal teenager. I look at him and besides his new hair-do, he is my Eli, just as he's always been. Outwardly, he seems healthy, inwardly he has a tumor that has aggressively weakened his bone. It's a good reminder that we never know what is going on behind the scenes. We are mostly clueless to what someone is struggling with on the inside, beneath this sack of skin that holds everything together. This life looks like running errands, making breakfast, lunch & dinner, working at my desk in my office, listening to Eli sing in the shower, feeding the animals, doing laundry, sanitizing, endless household tasks. 

And then another reality shift on Friday back into treatment mode and adjusting to the next hospital stay. This is the truly exhausting part. The switch up. 

As a mom, I've worn lots of different hats throughout the years. I've been a caregiver, chauffeur, chef, cheerleader, teacher, nurse, counselor, maid, janitor, builder, butcher, baker, candlestick maker.

We went to clinic again on Friday to check counts, which had gone up quite a bit. Eli's neutrophils were at 2000, compared to 140 just two weeks before. His bone marrow decided to crank it up. His platelets had also rebounded from 55 to 179. So we got some food and headed to our deluxe apartment in the sky. As we were headed to the car, an older man asked Eli, "what happened to you?" People always think that he has had a sports injury because of the crutches. Eli explained that he had cancer and the man pointed at him and said "you're gonna win!"

Checking into clinic.

 Treatment started and I got Eli some dinner while Richard and I traded shifts for a few hours. 

Home away from home

Saturday was gloomy tunes and I kept myself busy with some knitting and cranking out some episodes of Only Murders in the Building. Eli slept most of the morning. Richard brought him some lunch while we traded places. Labs were drawn mid-day and his MTX level at hour 24 was 3.5, which was pretty good. Then we got started on the Leucovorin again for every 6 hours. Riley came to hangout and she and Eli watched the Mike Tyson / Jake Paul "fight", if that's what we are calling it. Eli had some nausea and a headache so he got another nausea med and I brought him some dinner on the way back to the hospital.

While I was home I assembled his new gaming desk. 

Sunday's weather was on gray repeat and Eli slept all morning and into the afternoon, finally waking at about 3pm. His head was hurting a little more so he got some meds for that. Dad brought him his requested Subway for a late lunch and they watched some football while I went home for a break. His 48 hour MTX level was .25 (last weekend this time it was .24).

He was encouraged to get out of the room and go for a walk so we wheeled his pole friend down the hallway and went for a late night stroll. He hasn't given his poll a name yet. We've been encouraged to decorate it, but I'm not sure what kind of drip that we can add to the drip. I don't think Eli really cares to make it his friend, but it is always by his side, like a soldier fighting this battle with him.

The hospital is a breathing, living organism in its own right and it is such a different atmosphere on the weekends compared to weekdays. Weekdays are business, people are coming and going, the gift shop is open and the pulse is quicker. The weekends are slow, the hallways less crowded, the elevators vacant, the floors emptier and post-9pm, there is hardly anyone here after visiting hours have ended, other than patients and parents of kids.

The gloom subsided Monday morning to reveal hidden blue skies with a side of powdered sugar on the mountains, but the gloom isn't ready to let go quite yet and the gray still has us in a chokehold. The construction outside my window has resumed, heavy machinery beeping outside in harmony with the machines beeping on the inside. 

Eli started having some chest tightness in addition to the headache Monday afternoon after lunch. I told the dayshift nurse and we went for another walk and he said that helped, but by late evening he was complaining that it felt harder to get a deep breath and he was feeling a sharp pain in the middle of his sternum. All of his vitals seemed good and his oxygen levels and lungs sounded fine. The nurse gave him some pain meds and we went on another walk, which improved his symptoms.

I taught Eli how to play the card game of "War" and it went on for a long time while he a) accused me of cheating because I had all of the aces and b) asked if this game ever ends. 

We redrew labs at 10:30pm and waited patiently for results to see if we needed to pack up and go. This time we were committed to leaving no matter how late it was, but his MTX level was exactly 1.0 so we stayed another night.

The night was uneventful. I really loved the night nurse that we had. We've had a ton of great nurses and we are now starting to see some of our caregivers for a second time. There is something different about night nurses though. They are there with you as you are switching from your daytime routine and settling in for the night. They see you when you take off your make up and get into your pajamas. They are there when you are at your most vulnerable and intimate and doing one of the most basic human functions, which is sleeping. They are there when you wake up and are fresh-faced first thing in the morning or groggily helping your kid. This experience has been made so much better by the people that we have been surrounded by and those that have lifted us up when we are at our weakest and most vulnerable. 

Cycle 1 is done!

We head to clinic again on Friday to start the second cycle. It's been a long 5 weeks, but we are 1/6 through treatment and we will just keep counting down.

IT'S GOOD TO BE OK

How are you?

People ask this question out of habit and while some people truly care about your response, most people inquire without really wanting to know and maybe not even tuning in long enough to hear your answer.

The automatic response becomes, "Good. How are you?" without really thinking about how you truly are.

But good isn't great, is it?

If you respond with anything less than "good", it invites speculation. 

I have stopped responding with "good" in these situations, mostly out in public. People are just being polite and it has become so commonplace for this to be the go-to exchange. 

One person recently started a conversation with me by saying, "I'd ask you how you are, but I'm guessing the answer is pretty sh!tty!"

So, I recently started saying "okay" in response to the obligatory "how are you" inquiry and my daughter noticed the shift and said that it's weird not to reply with "good", but I told her I was having a hard time answering honestly when I don't truly feel like I am good. I don't blame people for asking this question when attempting to exchange pleasantries, it's just that sometimes things aren't all that pleasant. 

The abbreviation of O.K. is spelled out phonetically as "okay". The most commonly agreed upon theory for the etymology of the word O.K. is that it is an abbreviation for the phrase "Oll Korrect - a misspelling of "all correct". I don't know that things will be all correct, but we are trying to correct them one treatment at a time. Maybe someday it will all be fine. But for right now, it is ok and that's ok. We are ok. Everything is ok.

Eli had an appointment on Friday morning to check his counts and see if they had rebounded enough to admit for treatment and they were ok. They weren't good or great, but they were ok.

Walking into clinic.

Waiting for final counts.

I had all of our belongings packed incase he made his counts so we headed to get some breakfast and then back to the hospital airbnb. We've got a corner room on the 4th floor with a view of the foothills and the biggest window on the block. 

Before treatment.

Getting settled.

After a couple of boluses for hydration, he started on the methotrexate (MTX), which dripped over 4 hours along with sodium bicarbonate that gets continually adjusted depending on the PH of his urine, which needs to be at a 7 so his kidneys aren't damaged. 

He slept most of the next morning/early afternoon on Saturday, finally emerging from his teenage boy cocoon at about 1pm and didn't have much of an appetite, but otherwise felt ok. He ate some peanut butter crackers and then was hungry around dinnertime. The hospital cafeteria isn't bad and the menu is pretty decent for kids, but he isn't too interested. I got myself a breakfast burrito and sat in the dining area with a combination of hospital employees and other families.

I wonder about the other families as I pass by them in the hallways and share the silence in the elevator. We are all here for different reasons, everyone with a different story and someone they love inside these walls. We are all probably a little or a lotta scared. I shared an elevator with a mom who was also bringing a bag of Chick-Fil-A to a hungry fourth floor resident. She asked what my child was having done and I told her that he was going through chemo treatments and had been diagnosed with cancer. We walked the rest of the way until we parted ways and she told me that she would pray for my son. Hopefully we will all be ok. I wonder how tough this is on families, single parents and families with young kids still at home and parents without the flexibility to spend time at the hospital. 

Twenty-four hours after treatment, Eli's blood was drawn for the MTX level and he was at a 5.48 and he only needed to be <10 within the first 24 hrs and that was without any of the Leucovorin (folic acid) to help clear the MTX and protect his kidneys. Leucovorin is basically the antidote to the toxic MTX. Eli then got the first dose of the Leucovorin and continued to receive a dose every 6 hours.

Forty-eight hours after treatment, his blood was drawn again and he was at a .24 and he needed to be <1 so his body was doing what it should do to get this junk out.

We brought his XBOX this time and he was able to hook it up to the gaming monitor and play with his friends. The amount of joy of being able to play with his buddies was immeasurable. 

Gaming.

I've kept myself busy by watching Only Murders in the Building, which I am enjoying. I think I will start watching Yellowstone next.

It was Riley's birthday on Sunday so she stopped by to see Eli and hung for a bit until he started dozing off.

Labs were drawn early on Monday in case there was a chance we could go home. We were crossing our fingers that he would be <1.0, but not holding our breath. Sadly, his MTX level was 1.1 - so close, but not close enough to blow this popsicle stand.

So we redrew labs at 5:30pm and waited an hour for results only for him to be EXACTLY at 1.0. The oncologist said that we could redraw later that evening at 10:30pm and they would get the discharge paperwork ready to go IN CASE his level was acceptable. I got him some dinner and joked that his labs were going to come back with high levels of Chick-Fil-A. The chemo treatments might have taken the hair on his head, but so far, he still has his feathers. 

At around 11pm the results of the third blood draw of the day were in...drum roll please .09! We could go home, but now we were settled in and sleepy and Eli just wanted to go to bed and leave in the morning, which is what we did. 

So how am I? I am ok!

We are now home and it is SO good to be home. I think he was in the shower for 1 1/2 hours, washing away the long weekend. We have a couple of days before we go back to clinic on Friday to see if his counts are good enough to continue another round of MTX next weekend.

Rinse. Chemo. Repeat.