Rock Bottom But Climbing

Cycle 5 began at the beginning of the month, but this was his first outpatient treatment and involved going to the clinic back-to-back days on 4/3 and 4/4 for the infusions. I'm starting to feel the same as Eli and I don't want to say the name of the toxic drugs anymore.

His port was accessed, but the nurse was struggling to draw blood and when it came time for the infusion, she wasn't able to check blood return although the port flushed just fine. Checking blood return is important because it means that the catheter tip is seated correctly in the vein, that there is no blockage and that the chemo is going where it's supposed to. It's especially important for this drug, which is a vesicant and can destroy tissues if not going directly where it should.

I was a little nervous because they had already given the pre-chemo drug to protect the heart and only have a small window to complete the infusion, but the nursing staff was clam because they’ve seen this before. They explained that over time, a fibrin sheath can form over the tip of the catheter, so fluid can go in but then suction will cause it to stick, kind of like drinking a strawberry milkshake through a straw -- you can blow a bubble through the straw, but when you try to suck through the straw, you can't get anything out the opposite direction.

The solution was to put something called TPA in the port line to help dissolve the protein build-up and let it sit for 30 minutes, and while this helped a little, blood return still wasn't great, so he got some more TPA that sat in the port overnight to help dissolve it further. 

When we returned the following day, the nurses celebrated the beautiful blood return and the absence of any blockage. 

This drug is the one that tanks his counts the most, usually on days 10-14. We went to his team's baseball game after because it was #EliStrong night. His team and our bestest friends put together a sweet pre-game ceremony to encourage and uplift him in the final stretch of this fight.

The nurses at clinic got him a sweet little gift as well.

On Saturday he went out on a fancy date with Riley. On Tuesday, he turned 17 and blew out the candle in a stack of pancakes. He wanted to go to his baseball game and chose Texas Roadhouse for dinner as long as we didn't tell the server it was his birthday and didn't make him sit on the bull. 

We saw Dr M. on Wednesday 4/9 for his 12 week post up and somehow 12 weeks doesn’t seem like all that long ago, but yet so far away at the same time. Eli doesn’t have any pain so no X-rays were ordered. We went over some exercises he can do to strengthen his quad and covered how dangerous of a setback a fall would be. Eli was wearing an AC/DC shirt and Dr M asked what his favorite song was, probably thinking he'd trip up a kid wearing a band t-shirt he knew nothing about, not knowing that Eli used to bust out Back in Black on the drums. Dr M's favorite AC/DC song is Thunderstruck. We have a follow-up appointment scheduled for the second week in June to do x-rays after chemo is FINISHED!

We had a clinic appointment on Thursday 4/10, which turned into a blood transfusion because his hemoglobin had dropped to below 7 and his ANC was at .26, so he was also neutropenic. We were given the option to do one bag at clinic and come back the next day for the second bag, or go upstairs to the hospital for this procedure and Eli begrudgingly chose that option. He wasn't happy and I don't blame him.

The rest of the week and weekend were mostly uneventful and I didn't let him go to any games, but Sunday he mentioned that his throat was starting to hurt, which turned out to be the beginning of another case of mucositis. We are so close yet it still seems so far. For so long it felt like smooth sailing and now it feels like stormy seas. I guess all we can do is brace for the crashing waves and endure being tossed around by forces beyond our control knowing that this is a temporary deluge of nastiness overhead, but at some point, we will be spit out of the torrent.

I called the clinic and we came in and he was admitted. His ANC had dropped to .04, the lowest it's ever been. I was just waiting for him to spike a fever, which he did the next morning - 100.9, so they drew blood for cultures. His hemoglobin had dropped to below 7 again so he needed more blood. He got a neupogen shot to encourage neutrophil production but it only raised his counts to .06. His fever was gone by Wednesday and his counts had gone up slightly to .09. We talked to Dr. V who explained that his neutrophils have probably gone elsewhere in the body to mount the defense that they are supposed to, and therefore there aren’t many left when they go to do a peripheral blood draw. He got to visit with Panther, the emotional support dog and he indulged on Chick-fil-A milkshakes and had two on Tuesday and I made him some mini pancakes.

We were encouraged by elevated counts Thursday morning -- ANC jumped up to 1.2 from .09. His cheek was hurting a little more so he succumbed to the magic mouthwash regimen, but his fever was gone and his throat was feeling better

His counts were high enough to go home on Friday and he had stopped his IV pain meds, which was perfect timing because everyone was trying to get him out so he could enjoy prom on Saturday.

Being able to feel like a normal teenager was the perfect medicine and just what be needed to go back to the hospital on Monday for the second to last treatment of Cycle 5.

Counts were good enough to be admitted on Monday morning and he had a pretty good week with nausea under control and a great appetite. He got to visit with Panther again, who always puts a smile on his face. He cleared faster than he’s ever cleared before and by Thursday afternoon, we broke free of the tubes, machines and beeping sounds and got to go home sweet home.

This has been such a rough month and the doctors gave Eli the option to come back on Monday or delay until Friday. It doesn’t set us back much to take couple of extra days off so he chose the Friday option. I think this should work out pretty well for Bella’s graduation. The plan for Cycle 6 is to give him the neupogen shots at home after the doxo treatment to prevent such a drastic drop in white blood cells and prevent the neutropenia, which will then hopefully keep his immune system strong so he doesn’t get mucositis and end up hospitalized again. We are almost there!! Four more treatments and only 3 more stays!

5....4....

Eli’s spring break was not really a break at all and I kept wondering why people were asking if we did anything fun. We got out of the hospital on Tuesday, the weather was not ideal and he had to go back on Friday for Week 4 of Cycle 4. We skipped PT because Eli's mind and body needed the rest. He resumed school with two different online classes - math and English and finished the first quarter with As in science and history.

He made counts on Friday and his mucositis was all cleared up, so he was admitted and treatment began. Rinse & Repeat. There was conversation about how nice it would be to have another week off, but that would delay the treatment that he has to do anyway and the consensus was that we hoped we would make counts. We've mapped out the schedule and staying on track would mean that he is off for his birthday, prom and Bella's graduation. The stay wasn’t awful though and actually passed quickly. He had a great appetite, nausea was under control and he cleared first thing Tuesday morning and felt great all week. He even went for some hospital strolls and made it to his baseball game Tuesday night, hung out with Riley a couple times and enjoyed his freedom.

We like to walk down the hall and sit for a change of scenery and to get out of the room.

Eli's secret to clearing this time was lots of In N Out Double Doubles. I don't want to admit how many he put away.

PT today included getting in the pool for the first time and walking unassisted, which I could tell was such an awesome feeling. He’s lived with so much assistance these past few months so to be untethered, unsupported, and free was such a joyful experience.

PT consisted of walking and doing some resistance for about 50 minutes. This was the highlight of his week and the one appointment he doesn't dread. 

And breakfast afterward at the Griddle.

And getting the windows tinted on his car.

Nobody wanted to go back on Friday. It’s become one of those things we don’t discuss when we are between admissions. We all know it’s coming, but we just try to enjoy the days in between in blissful ignorance of what’s around the corner. We had an early morning appointment at clinic where Eli wasn’t in the mood for eye contact or pretending to be in good mood.

We had some time before the room was ready so we got some food until we got the green light to head upstairs. We were in the same room as last week. The days start to run together inside these walls. All day Saturday, I thought it was Sunday. A normal person wills time to pass slower on the weekends, wishing for more time for leisure activities before Monday rushes in with its demands and structure. Here we sit, wondering how we can spin the hands around the clock faster, speeding toward Tuesday. This weekend will finish out Cycle 4 of treatment, with only TWO cycles remaining and FOUR hospital stays left. 

Week 1 of the next two cycles will be out-patient only at the clinic and he will have a 24 day break from the hospital. I am no longer viewing this as a Light at the End of the Tunnel situation. The tunnel still feels mostly dark. But I do think that this marathon has a finish line. I can't see it, but I know that it is up ahead, around the bend. At this point, it's a mental battle of just putting one exhausted foot in front of the other, as our bodies physically carry us the rest of the length of this race and our minds stay strong to get us to the end. 

His appetite has remained strong the last couple of admissions and he's been awake for most of the second part of the day. He's passed the time with watching March Madness and Dodger Baseball. He's been clearing pretty quickly and Monday afternoon was at .11, but the doctor wouldn't let us redraw later, which they've done before. First thing Tuesday morning, he was at .08, but we still had to wait to see the doctor before discharging, although Eli was very close to de-accessing himself. 

And....we took our freedom ride. Eli seriously breathes the BIGGEST sigh of relief when we get home. 

I love this boy that calls me mom. I will love him forever and like him for always. 

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