Cycle 6 + Bell Rung + NED

NED
No Evidence of Disease
Eli is cancer-free

I wanted to lead with that. Sometimes I can be long-winded and I like to set the stage before delivering the facts, but announcing that Eli is cancer free is the most important detail in this story.

Backing up to the final cycle. We started Final Cycle Six on 5/12 and 5/13 with in-patient doxo and started on the daily neopogen shots, which worked as expected to prevent a crazy dip in neutrophils. He had a couple weeks off, finished up his junior year of high school and went to some baseball games. 

We went back in the day after Memorial Day on Tuesday 5/27 and he slept most of the treatment and took a while for levels to drop so they upped his fluids. 

For his final treatment, he was admitted by one of our favorite nurses, Anna. She was his very first nurse on that very first day and we were so lucky that it was her to round out the final admission. Even when she isn't scheduled on the oncology unit, she comes and finds Eli and wakes him up with hugs. She loves to beat him at Uno and ask him all the questions. We are going to miss Anna and all of our nurse friends.

His doctor ordered more fluids since his levels were higher than usual the time before and that did the trick to get them all the way down to a 3 after 24 hours. We were planning on bell ringing on Saturday and now I was panicking that he was clearing too quickly, when in the past, that's all we wanted! After 48 hours, he was at .2. He was feeling pretty good - just bored and feisty and tired of sharing a room with me. By Friday afternoon he was at .12 so we planned on 12pm the next day to RING THE BELL. Finally.

 

First thing in the morning, he was at .08. The onc doc on call rounded way earlier than expected so we waited for all of our peeps to show up to help celebrate.

I wasn't sure what kind of emotions would be present, so I was just preparing to go with whatever. I didn't know if I would cry, cheer, breathe a sigh of relief of all of the above. 

Eli walked a lap without his crutches while the nurses sang, wearing silly hats and glasses and we all rang handheld bells as Eli made his way to the big golden bell that has been hanging on the wall, a constant reminder of the end goal of treatment. 

The most emotional part for me was saying goodbye to the nurses and support staff that have been a constant presence these last 8 months. We saw so many of the same faces for more than half of a year and you can't help but form a special bond to people who are helping your child and tending to so many needs. It was bittersweet to walk away filled with gratitude, walking out the doors of a place that was so familiar for so long, a place Eli dreaded checking into for obvious reasons, but I was strangely going to miss. We've longed for this day. There were time when it felt like we'd never be done, that the end was so far away and all of a sudden it was here and didn't feel real. We walked away leaving it all behind. Closing the treatment chapter. Moving on with our lives and returning to a normal that doesn't include a pending hospital stay.

On 6/10, we had a follow up appointment with Dr. M to do another set of x-rays. Not much has changed since February, which was to be expected since chemo slows everything down. The implant is still seated correctly without any signs of loosening or infection and his range of motion is still good without any pain so we will plan to repeat x-rays in 3 months. Eli is cleared to use one crutch for support and stability. His leg and muscle feels really strong and he has gotten pretty confidence and stubborn.

The next week, we were up bright and early Monday morning for the first of Eli's re-scans - the PET Scan. Sunday he couldn't eat any carbs or sugar in order to get the most accurate results and not long after we were back home, I got the notification that the results were in. I had a little scanxiety and I was really nervous to review the findings. I was hoping for boring and uneventful results and as I scanned them quickly, my heart starting beating faster and my breath quickened as I was surprised that a couple of his lymph nodes had an increased uptake of the FDG tracer. I was pretty confident that it was inflammation and/or reactivity from nearby trauma from surgery, mucositis, infection, etc. I sat on the news for a couple of days. Our appointment to review the scans was well over a week away and his doctor had said that she would call me if there was something we needed to discuss sooner. I called the clinic on Wednesday and Dr. V said she wasn't worried AT ALL about the lymph nodes and that her opinion is exactly what I was thinking and that everything looked good. Whew.

Friday we did the CT and MRI. I was confident, but on edge. Confidently on the edge. The CT was fast - about 15 minutes or so and the results came in while we were in the MRI waiting room. I opened them right away and right at the top read "No signs of intrathoracic metastasis". I breathed a huge sigh of relief and gave a fist bump to Eli. The report also noted that his heart and pericardium are normal. While I was pretty sure that the CT would turn out this way because he went into this with a clear CT scan, it was a relief to know that nothing had spread.

We got moved to a second MRI location within the hospital once we were told that the original machine they had scheduled was too strong to produce the best images of Eli's knee/femur. MRI scans function by using a strong magnetic field which reacts with the hydrogen molecules in the body (since our bodies are largely made of H20). But when you have large metal "artifact" like Eli does, the MRI machines with the stronger magnets (3.0) actual produce worse images compared to the lower level magnet (1.5), so we moved to the other side of the hospital to wait for the machine that would produce less distortion. The room was chilly and I was plugging away working while Eli was getting bored, restless and we were both getting hungry. We had arrived at the hospital at 7:45 and by around 10:45 the machine was free and he went back.

We headed to In N Out for lunch and as we were waiting in the drive-thru line, I got the notification that a new test result was ready. I hesitated and then opened it. I was overjoyed to read "There is no evidence to suggest residual or recurrent disease"! My eyes welled with tears and I looked at Eli and told him he didn't have cancer any more and I hugged him tight. This was the final scan and with all of the results we know could feel confident that he had officially gotten rid of all of the osteosarcoma.

We got up to the window to pay and the guy at the register told me that the car in front of us paid for our food. I burst in to tears. After composing myself I told him that we had just received final confirmation that Eli had just beat cancer after a long 8 months. He gave us his blessings and congratulations. 

So we cheers'd our cheeseburgers.

Next week we check his heart with an ECHO and EKG and a final hearing test. Then we meet with his onc doc on Friday. We have surgery to remove his port on July 1.

He'll continue to go to clinic over the next few months to do monthly blood work as they monitor his labs to make sure that everything gets back to normal ranges. He'll have a scan schedule, the first being 3 months from now and then planned out over the next year. It is my understanding that CT scans will be most important to continue to monitor lungs. I am looking forward to the FIVE year mark. Right now, we are overjoyed that he is NED. We heart NED.

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.

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.