Cycle 4 Weeks 1-2 + PT + ER Visit

In like a lion…

We started March feeling okay-ish - couple of queasy days even though we threw everything at the nausea but appetite was good. Eli went to a couple of baseball practices and we had some sunshine days of good weather.

Eli had a clinic appointment on Thursday 3/6 to check counts and his neutrophils had already dipped to .96 (960) which is moderate neutropenia. We always expect them to drop after the Doxorubicin but I really wasn’t thinking that they would drop so much in such a short period of time. Normally we see them drop this low between days 10 to 14. So he went to his first physical therapy appointment and he did a little bit of cardio, some resistance bands, and some weightlifting on the weight bench. He was really excited and looking forward to this appointment.

I let him drive home.

Once his counts go back up and his incision is fully healed, he will be cleared to get into the heated pool and at that point he can do some resistance and some walking in the water without bearing any weight on his leg and I think that this will be really good for him physically and mentally.

Bella started feeling sick that Saturday and she isolated herself to the upstairs and was recovered and back to school by Tuesday. But on Monday Eli told me that his mouth was starting to hurt (mucositis) and he couldn’t eat his breakfast. He pretty much survived on protein shakes and ice cream for a couple days and I called clinic and let them know that he was having a rough go and they told me to call back and make an appointment if he was unable to stay hydrated or drink anything, but he was not having those types of issues other than just not really being able to eat anything solid so we stepped up our magic mouthwash rinse, and salt and soda rinse and some Helios solution and made sure we were brushing really well. There weren’t any visible mouth sores, but he was uncomfortable and it hurt even to talk.

He really wanted to go the first baseball game of the season on Wednesday 3/12 and I didn’t want him to go. It is hard to pick and choose what to sit out on and how much to participate. This battle is physical and mental and mentally he needed to be there, so he went and I came later. Wednesday was really tough. He wants to be out there, wants to move and play like he has his whole life, wants to contribute on the field and in the lineup, but he is forced to sit this one out. This curveball is taking longer to master and he’ll just keep hacking away.

Thursday we had another PT appointment and he did some cardio with the arm bike and some resistance and weights. His hemoglobin is low but he keeps on pushing and keeps on digging deep.

We went back to clinic on 3/14 and his counts had dropped even lower to .5 (500) neutrophils, which is severely neutropenic. He’s only been this low (.6) at one other point in early November. Although his mouth was feeling better, his throat was now feeling like the mucositis had migrated there and he could feel it when he swallowed. I gave him some pain meds Friday night, but by Saturday morning, he could hardly swallow and was very agitated and in pain so we went to the ER. He was admitted and put on some strong IV pain meds. Sunday morning he spiked a fever and he started IV antibiotics to be proactive in case he has an infection. They did a blood culture and it was negative after 24 hrs. His doctor feels this is just a neutropenic fever. His monocytes are increasing which is a good sign since they start rising before the bone marrow starts churning out more neutrophils. Then his body can kick into high gear and start healing. His immune system and bone marrow have been more suppressed this time around.

Watching the Dodgers play in Japan.

Sunday night his temp elevated again and he had a fever all night long so more labs were drawn Monday morning to do another culture and his neutrophils had decreased instead of increased so he got a shot to encourage production. His fever broke on its own and we dialed back the pain meds to keep him more awake but he still napped quite a bit. He’s able to breathe room air though and keep his O2 saturation level up. He was also hungry and ate some more Mac n Cheese and another milkshake and some jello.

Monday night he got a visit from Riley and another milkshake and some dinner, which is really the first full meal he has had in over a week. I think we are turning a corner and should hopefully be on the other side of this setback, We will see if he is good to continue treatments on Friday or if we delay for a week to allow his body to recover and be a little stronger. Eli stronger.  

Last THREE PEAT and Cycle FOUR

We are officially HALF WAY through with chemo after completing the last two back-to-back methotrexate treatments. After the first mostly uneventful stay the weekend before, I wasn’t sure what to expect the follow-up weekend. He didn’t have as much anticipatory nausea and I ran home and for his guitar. He played for a bit, but not much before his stomach started to hurt. Half way through the infusion he started to feel it and the nausea kicked in and his appetite disappeared but not before he ate a cheeseburger.

He told Doozle to hold it down before he left and he complied. Doozle just has a way of know who isn't feeling well in the house. He heads to Eli's room every morning and sleeps on the LoveSac. Sometimes I hear Eli telling him to stop snoring.

He slept all day Saturday but did eat some dinner. However, that was the last time he ate the entire stay. He was awake a little on Sunday and then slept through Monday. His levels dropped decently the first 24 hrs but I wasn’t that encouraged after 48 when he was at .13 and even more discouraged when they redrew labs and his number HAD. NOT. BUDGED late Monday night. Tuesday morning he was .11, the highest he’s been at the 96 hour mark, and the longest we’ve had to stay. Normally we go home early on Tuesdays. Eli had been saying he wanted to go home since Friday. This stay felt like the longest mentally because it just went by so slow.

We were given the option to redraw 6 hours later and risk not being low enough or just wait it out and redraw at 8pm with discharge papers ready to go. Sure enough he was at .08 by 9:30pm and we got to leave, shower and sleep in his own bed. His nausea finally subsided even though he did have a pretty bad headache Sun-Tues. After we got home the headache felt better and not as bad as previous treatments.

He had an ECHO scheduled while we were in-patient and his heart shows good cardiac function and no evidence of chemo-related heart damage so that’s great news

This weekend was the final Cisplat treatment and I am so happy to check that off our list! It also means this was our last three-peat weekend.

I love him so much. I wish I could take this away, do the treatments for him, speed up time and heal him. I often wonder why this had to happen. Why is he 1 out of 450? I know wondering doesn't change it. I know there are lessons, growth opportunities, challenges for new perspectives, outlooks and personal development. I know this is just a little roadblock in his journey and we will look back and have an "aha moment", like "oh, so that's why". It's hard to zoom out when every second, minute, hour is consumed sometimes with thinking, planning, executing. Right now we are fixated on minimizing symptoms, maximizing comfort and planning on healing.

This weekend we got our OG room with the big window. We got our OG nurse who’s been Eli’s ride or die since Day 1. After a quick 36ish hours, we were discharged at 10pm and headed home.

We will have a nice break for a few weeks. We rescheduled his PT eval until next Friday. We are happy to be moving forward with the next part of healing and getting his leg stronger to begin bearing weight at some point. Here are the 6 week post-op XRAYs. Everything is still seated correctly and looking good. 

The bone shows some early bone remodeling and strengthening, especially around the fixation pins, which is encouraging.

For now we take a deeper breath in. Eli has plans to attend as many baseball practices and games as possible during this next few weeks off from treatment. The weather has turned for now and the warmth on my bones and in my soul feels like an amazing promise of what's in store for the rest of 2025. 

Round 2 Cycle 3 + Hearing + X-RAYS

“I’ll take…

’Not Looking Forward to Chemo’ for $2,000, Alex”.

We like to watch Jeopardy as a family. Eli knows a lot of stuff and has always been good at retaining the information that he cares about and other random trivia.

When we watch Wheel of Fortune, we yell at the contestants that buy vowels. I’ll never understand that strategy.

Our strategy with this cancer continues to be mopping up any rogue cells post-surgery. We had a good almost three weeks off, other than some clinic visits to check counts.

We were able to help out at the baseball fundraiser dance and I know he loved seeing everyone.

We had a snowy week and crutches make me really nervous in the snow.

We went to clinic on Friday, which happened to be Valentine’s Day and he had lost his appetite a couple of days before. He wasn’t feeling good before treatment began and slept literally ALL day Saturday but by Sunday he was feeling good and his appetite had returned and he was hungry.

He stayed awake all day and continued to feel good Monday. He played Uno with his nurses. His levels were dropping like they should but I wasn’t hopeful that he’d be low enough to leave when they drew labs at 430pm. We took some guesses. I thought he’d be at .11 and Eli said .12. He came back at .10.

We redrew labs at 10pm and by midnight we were discharged after he got to .09. I didn’t care how late it was, we were definitely sleeping in our own beds!

His hearing was rechecked on Wednesday and the audiologist said the hair follicles in his ears look really good. He only has one more Cisplat treatment so that was encouraging to hear, literally. She said he has really good hearing and this seemed like an unexpected and overwhelming positive outcome.

“I’ll take…

’Sounds Like…’ for $2,000, Alex”.

His 6 week xray was performed today and nothing has loosened and hardware looks good. He even has some bone callousing around the implant which is a sign of healing and growth. The incision continues to look good. He was instructed to continue to stretch it straight, bend it more than 90° and do some leg lifts to wake up his sleepy quad. But Dr M said he’s doing better than most. We have a PT appointment next week.

“I’ll take…

’Bone Growth’ for $2,000, Alex”.

His hair is gone again and it’s been about 2.5 weeks since the last Cisplat treatment so we knew it was coming but he was enjoying the regrowth.

We’ve got an early morning checking in at 8:15am, but that just means we get started earlier and maybe can leave earlier. This is the last treatment to round out Cycle 3 and we are officially half way there! WOAH!

Cycle 3 Week 2

We are officially four weeks post-op and if you would have asked me in late December what late January would look like I would have explained a worst-case scenario situation. I was really bracing for the worst, expecting that life would be, and feel, a lot different than it currently does. I anticipated a really difficult post-op healing and recovery with a lot of pain, a nasty scar and a bed ridden kid. Time has a way of putting space between what was and what is. It doesn’t seem possible that we are already a week into February.

He's done an amazing job logging into school every day and catching up on all of his assignments, completely on his own, without any reminders. He's also kept himself busy building LEGOs.

“I’d trade all of my tomorrows for one single yesterday”... Bobby McGee by Janis Joplin is on my "Jams" Spotify playlist and it came on yesterday. This lyric stuck with me. So many days I long to go back, to get a chance to do life with them over. I feel like I probably romanticize a lot of it, remembering the fondness of it all and not the difficult moments. I wonder if I appreciated it when I was in the trenches, or if it's easier to wax nostalgic for days gone by and times long past, now that they are older. I don't know who I want to blame or thank on any given day depending on if I'm currently viewing time as a gift or a theft.

Eli had a decent week last week after treatment only dealing with some mild delayed nausea triggered by some isolated events but still maintaining a good appetite and kept the weight on. We went to clinic last Friday to check counts and he hadn’t dropped too low at that point. Then the weekend was mostly gray and pretty uneventful.

Peep the scar.

This week Eli had a follow up appointment with the surgeon here, who did the original biopsy. Everyone seems really impressed with Eli's healing thus far. His incision looks really good. He has a lot of good muscle strength and range of motion. The plan is to take x-rays in 2 weeks and see what bone growth looks like. He’s been able to shower completely on his own and get up and around. We aren’t using the wheel chair that much. He’s able to get along really well on crutches. The most important worry is to make sure he doesn’t fall. We've had a really dry winter up until this week and have now been dumped on a couple of times. 

He made me text Dr. G to ask if he can drive. He replied that we can revisit in a couple of months. :) 

Waiting to see the ortho surgeon.

We had our clinic appointment a day early so we could see Dr V (his main oncologist) because we haven’t seen her since before surgery. She was also impressed with his progress, healing and lack of pain. It’s actually crazy that he only needed pain meds for 12 days after surgery and only 6 days after we left the hospital considering how much pain he was in for the first 5 days.

We have confirmed that he only needs ONE more Cisplatin treatment in Cycle 4 so on these treatment weeks (week 1) he can go in to clinic and get the doxorubicin infusion on day 1 and 2 and go home so that’s TWO less hospital stays in his schedule.

We go back for inpatient treatment on 2/14 (I’m sorry Riley) and this will be the last of our three-peat stretch. So three more hospital stays this month and then only four left for the next few months.

His counts Friday weren’t as non-existent as last check this same time period, but still low. His hair has grown back so much. He had too many eyebrows to begin with and got to keep those and although some of his pretty lashes fell out, most have grown back. I would imagine that this last dose of the Cisplat will make these strands come loose again, but he's my handsome either way.

Cycle 3 Week 1 + PATHOLOGY

Last week seemed to pass pretty quickly and then it was Friday. We went to clinic for our appointment and Eli's counts were good so we got back in the car to drive over to the hospital drop-off area. Our routine is that I pull up and get a wheel chair and he gets out of the car and I load up the wheel chair handles with all of our bags and belongings and park him in the lobby. He waits while I park the car. Depending on the day and time, the parking lot can be pretty busy and I've got to park all the way on the bottom of the parking garage. Then I meet him in the lobby, we check in at the the visitors desk, bypass registration and go directly to the fourth floor where our room awaits.

It had been exactly a month since we came home from the last treatment of Cycle 2 on December 24th and it truly felt like so long ago that we were in patient for treatment. We got assigned a room we hadn't been in yet and said hello to our familiar nurses and showed everybody the xrays of Eli's new hardware, his incision and the good news of the pathology report.  

When you get a tumor resection surgery, the tumor is sent off to pathology for analysis. For Eli's tumor we were hoping for two things - 1) negative margins, meaning that the tissue closest to the tumor was negative for any cancer cells and 2) at least 95% necrosis (tumor death). Dr. G texted me Tuesday that the pathology results were in and I was overjoyed to see that the margins were indeed negative and we achieved OVER 95% tumor death. This was huge news. It makes you feel that all of the weeks of treatment and side effects weren't pointless. It was just what we needed to buckle up and continue on with the remainder of the four cycles that we have left.

Friday started off well and treatment got underway. Eli was feeling pretty good and was actually hungry Friday night so I brought him a pizza. He usually loses his appetite after the cisplatin begins so I was encouraged by this change. There was some chatter that he could possibly not feel as bad now that the tumor burden is gone as well as the inflammation that the tumor was causing. Saturday passed with him resting for most of the day, but he was hungry later in the evening and was able to eat dinner.

He then started feeling pretty gross middle of the night and into Sunday, trying to sleep it off and stay ahead of the nausea. We got discharged about noon and he spent the rest of the day in bed trying to relax. 

Monday he surprised me with actually logging on to do his school work and sit through his classes. He was able to catch up on some assignments that he missed when he was out for surgery. He said that his classes were a good distraction and helped to take the focus off of any lingering queasiness, but he still didn't have much of an appetite. The only anti-nausea med that we didn't use this time was the scopolamine patch because it dries his eyes out like crazy but maybe the trade off is worth it. He also had to do the pneumonia treatment and no headache this time so I guess we can rule that out as the cause of the headaches he got the last few methotrexate rounds.

This week I've been reflecting on the fact that this battle is not just physical. There is such a mental component to battling this beast and it can really mess with your mental state when you feel that there is no escape. Fortunately, these moments are fleeting and once the symptoms go away, the storm cloud lifts and there is a light at the end of the tunnel.

We will check counts again on Friday. Our post op appointment was rescheduled until Tuesday. We are almost through January, one of the toughest months on record, maybe second to October, but it’s a toss up. Pretty soon it will be February and we can continue checking days of the calendar and weeks of remaining treatment

COMMUNITY STRONG + ELISTRONG

Eli hasn't been back to school since October 1st, the day of our first appointment at the beginning of this cancer roller coaster that has been full of twists and turns and ups and downs. Sometimes the weeks seem to slow down and we enjoy a reprieve from the onslaught of appointments, pokes, treatments, nausea and waiting rooms but then we are whipped around a bend bracing for the unknown, holding on tight with a lump in our throats and a knot in the chest.

Eli's favorite thing about school is people and lunch and maybe a couple of classes. To say he misses the daily social interaction is the understatement of the year. 

The day we left from the hospital, his high school dedicated the week's basketball games to him, selling #EliStrong t-shirts and wrist bands and spreading awareness for osteosarcoma. Eli wanted so badly to get on the road that morning so that he could go to the game, but we didn't get discharged until later that evening. 

The baseball team's Fight Like a Wolf hoodie is one of my favorites.

This journey has been, and will be, full of peaks and valleys and bumps and bruises. At this juncture, we can't get off of the ride yet. Sometimes it feels out of control and other times it feels like we are chugging along, like we've seen this road before. It has officially been a short two weeks since Eli's surgery and it feels like more time has passed. He's made so much progress in these short two weeks and I'm so proud of his efforts and recovery. I thought that it would be much worse, but so far, so good. His incision looks good enough to resume treatment tomorrow where we will start up with doxorubicin and cisplatin. Hopefully it's just a quick overnight stay and the nausea meds do the trick and he doesn't feel too out of sorts.  

On Tuesday, Eli had a repeat ECHO to check his heart. Everything looks good and there haven't been any changes to his cardiac health. It was his first visit out of the house since we've been home from surgery. His hair has started to grow back in this short break from treatment.

On Wednesday he had a hearing test and I loaded up his rental wheel chair but he said that he could use his crutches and he did. He has gotten so much stronger on his crutches and has more stamina to go longer distances. His hearing is mostly pretty good, except he has some slight hearing loss at high frequency in his right ear, but nothing major. After the first two cycles of cisplatin he had some ringing in his ears. Fortunately, he only has two more cycles that include this drug.

He's pretty mobile around the house now. He can get in and out of bed and wheel himself around and he can get in and out of the shower just fine. He is able to bend his leg at a mostly 90 degree angle and can sit and play video games. He has also logged back into school this week and is trying to catch up on what he missed. Most impressive is that he is off all pain meds, except a couple of doses of Tylenol here and there, which is actually really surprising to me, considering how extensive this procedure was. His last dose of oxy was Tuesday morning. 

He says that the metal feels weird in his leg, but he's able to move it a little bit and his muscles are getting stronger. He still has quite a bit of swelling around the knee and upper thigh. We will get another x-ray in six weeks to see how the bone is growing and everything is healing and he might be able to start some physical therapy. Chemo will slow down some of the bone growth but I have no doubt that Eli's body will continue to do what it needs to do, just as it has been doing every step of the way. 

We will continue to hang on tight and hold him tight. Eventually this ride will stop and we will disembark the crazy ride with the sound of the bell ringing behind us and the hallways lined with everyone celebrating Eli being able to physically walk away from this cancer.

TUES/WED/THURS/FRI (PART III)

I don't know if we've intentionally raised our kids to be strong or if they are just stubborn. I used to tell myself that the qualities that seemed like such a challenge when they were two and three years old would only serve to benefit them in the future. I don't want to brag, but I was right. The strength of a man isn't measured by the firmness of his handshake. Maybe Eli could teach a masterclass. 

Strength comes in many different forms and maybe sometimes one type of strength compensates when other muscles are lacking. Even though you might feel weak physically, you can still demonstrate mental toughness. When you feel completely emotionally broken, you can dig deep and find a spiritual resolve that carries you along, holding you just right until you can rest enough to get back up. They say that tough times don't last, but tough people do. The Parkers are tough and Eli has demonstrated more mental, emotional, spiritual and physical toughness in these last few months than most people muster in a lifetime. Part of finding strength is knowing that you won't always feel or look strong and that it's okay to sit in your weakness. Just don't stay there too long. Sometimes getting back up looks like baby steps before you can take longer strides.

This week has been full of so many challenges, but so much growth. Eli has tried really hard this week to overcome new obstacles and Tuesday, he was able to stand up to brush his teeth, got out of the room to go for a short walk with the walker and sat again in the chair by his bed for 15 minutes. Each time he pushes himself so much and talks himself through his plan of how to get where and what steps he is going to take. I enjoy watching him attack these challenges in such a methodical and determined way, providing all of us a verbal roadmap of exactly what is going on in his head. 

He was in some pain when we started, but he pushed through. He needed to sit down after brushing his teeth, but he pushed through. He made it to the window at the end of the hallway, but needed to take a break in the wheel chair, but he pushed through. Strength is about not giving up. Strength doesn't depend on how long it takes as long as you do it, even a little bit, because next time you'll be able to do more, go further, reach higher, dig deeper.

His pain was better Tuesday. He was no longer on any I.V. pain meds and the nerve block was removed allowing some feeling to return to his quad muscle, which is important for stability. Right now, he needs to use the knee stabilizer when walking so that his leg doesn't buckle and give out. 

The In N Out fairy delivered two double-doubles and then he took a nap. He finally reached his fill of hospital food and I think he might be the reason that they are now out of strawberries. 

He went back to singing and saying random stuff, which was literal music to my ears.

Tuesday night he kept threatening to Door Dash something to the hospital. When I told him he didn't need more food, he said "Come on, man! You don't like me?" and then we ordered Wing Stop.

He was able to sleep in for the first time on Wednseday, returning to his teenager habit of sleeping until noon, which was good because he was starting to be able to go longer in between doses of the pains meds. We took off the knee stabilizer while he was resting in bed. PT and OT came by again to go for a walk and he requested crutches this time and he killed it and even did some stairs!

I asked the nurse what we were waiting on in order to be able to go home since we were already cleared with PT and she said that he needed to go 4-6 hours in between pain meds, which we did. So she asked us if she got the discharge paperwork ready, would we be interested in leaving that night and Eli, eyes closed, sleeping, said "Yes!" It took about an hour while she made some calls, got all of the prescriptions called in and by 7:30 we were on our way and 4.5 hours later we pulled into the driveway rocking out the whole way home.

I have to give him a anti-coagulant shot twice daily until he starts chemo, which is scheduled for next Friday. He has been going longer stretches between pain meds. We have a wheel chair at home and he was able to shower! His scar is pretty gnarly and snakes down his thigh and across the top of his knee, a battle wound that tells a story of strength, bravery, determination and so much mental toughness. I am proud to be his mom. Proud to know him.