Shop #ELISTRONG

Wednesday, May 21, 2025

FINAL CYCLE!

Well, we ended up delaying the final round of MTX for Cycle 5 until Sunday, instead of starting on Friday, because there was a baseball game that Eli wanted to go to and he said he had to be there, so we requested to delay a day and check in the following morning. However, the game resulted in a win and that meant playing a possible two games on Saturday and Eli again begged me to call the doctor first thing Saturday morning. So, we now had plans to check in on Sunday morning.

Before we went back in for treatment, Eli had a really great week. He told me that he had just been so happy. He was playing games online with his friends, laughing, joking, going to baseball games and feeling like his old self. 

His eyes started to get really irritated at the game on Saturday - they were incredibly red, itchy and watery. The weather was gorgeous for the first game - sunny with a slight breeze and it had been a while since we had been able to enjoy some good weather. There was rain in the forecast and sure enough, the second game got windy and stormy. Little did we know that MTX causes photosensitivity and my arm got red and Eli was a little pink when he got home that night. In addition to his irritated eyes, he told me he thought he might catching something because he had a runny nose and a little cough. Sunday morning I woke him up and he told me to call and postpone again. I wish! So we headed to the hospital.

When we got to the unit, his eyes were still a mess and the doctor assessed him and gave him some Benadryl to calm down the allergies, thinking that it sounded like hay fever, but after treatment later that day, he got a fever and they ran a respiratory panel and he tested positive for one of the original coronaviruses that circulates every year. 

When we are in-patient, we take walks out of the unit and down the hall and sit in a couple of chairs before we head back. His appetite was really great and he didn't have any nausea AT ALL. I think this was the first time in a while that he didn't feel gross. He played a few games of Uno and charades.

You can see his neck is slightly pink in this photo, which was the beginning of his sunburn. He ended up with a pretty red sunburn on his neck and forearm that didn't develop until about 3 days later and continued to get worse. I was afraid it was going to blister, but a ton of aloe seemed to help. He cleared really really slowly, in fact, the slowest he's cleared yet, so we didn't get to leave until late afternoon on Thursday, but it was so nice to get in the car and speed away.

We spent a quiet day at home on Mother's Day and played some indoor Jenga. We got the tower pretty tall before I knocked it over. 

On Monday morning, we headed to clinic to begin the last cycle and returned Tuesday for Day 2. He felt a little crummy Tuesday evening, but started feeling better by Wednesday and his appetite and nausea have been great. 

Thursday he got to go back to PT, which was such a great session. It's been several weeks since we've been able to make it due to treatment, low counts and unexpected hospital stays. He really loves getting in the pool and moving about freely without restraint or crutches. He even got to "run" a little.

He hopes to spend a lot of time in the pool this summer. He will have to be extra diligent all summer long because of the chemo and risk of sunburn.

This time around he is getting neopogen injections to keep his counts from dropping to a neutropenic level. The neopogen is a synthetic form of Granulocycte Colony Stimulated Factor (G-CSF), which natural occurs in the body and helps stimulate the bone marrow to produce neutrophils. He gets these shots once daily. We have a little bit of a break before we have to go back on May 26 for the second to last round! We are thisclose.

Friday, April 25, 2025

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!

Saturday, March 29, 2025

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. 



Monday, March 17, 2025

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.  

Thursday, February 27, 2025

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. 

Eli's Diagnosis

Where do I even begin? No parent expects something like this to happen to your own kid. You selfishly think that something like this can...