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. 

RECOVERY + DAY 3/4/5 (PART II)

The first day (Friday) in recovery seemed to go well and was mostly about finding the right balance of pain medication and trying to get him to eat a little food and drink some fluids and settle in for the night. He had three IVs, one in his foot and two in his right hand and an arterial line in each hand as well. On Friday night he got a dose of valium to one of the hand IVs and it caused a lot of pain. The same thing happened the next morning. Valium stings when going in anyway, so I think the pain was overlooked. 

The day nurse was unable to flush the IV or get a blood return for lab work and his heart rate had been elevated all day, increasing into the 100s and staying there, bouncing between 100-115 and jumping up to 120s. She called the IV team to see if they could see what was going on and they noticed right away that his right hand was super swollen and that there had been an IV infiltration, where the fluids stop going into the vein and start collecting in the tissue. He had been getting other pain meds into this line as well so it was definitely concerning. He also started to get an elevated temperature. None of these are great signs but it isn't uncommon for tachychardia (resting heart rate over 100) to occur post-surgery. They wanted to rule out any other issues so Eli got a chest x-ray (lungs look great), and an EKG (heart looks great) and a blood & urine culture and some other labs. The pediatric doctor made a visit and assessed him and said other than the heart rate and temperature, he looked and sounded really good. We finally got some sleep a little after 1am and had a pretty restful night.

Sunday morning, PT came by again with a walker and a goal to get Eli to stand up out of bed and maybe take a step. Other than briefly sitting on the edge of the bed yesterday, he has not been up at all. This turned out to be too ambitious of an ask because after the first step, he got light-headed and I had to hold him up while he briefly passed out until we got him seated again. He definitely should have eased into this a little more slowly.

He can't bear any weight other than a toe touch for six weeks and then we will do x-rays again to see how it is healing. He will resume chemo in 10 days and that will slow down bone growth and healing. After the six weeks he might be able to bear a little more weight and begin more PT.

The Ronald McDonald House lounges are on a three different floors and provide different amenities. I got lucky and scored an unoccupied washer and got a load of laundry done. It is really such a nice added service. I will forever round up at McDonalds. The main lounge also provides meals twice a day that are prepared by volunteers for families with children receiving treatment at the hospital. The cafeteria and room service is pretty good as well and Eli has actually been eating what we order for him.

Late Sunday the IV in his left hand started to fail, but his night nurse caught it early. The IV team was called up again and started a new one in his forearm and removed the one from his foot. He got another EKG and everything checked out with his heart, despite his consistent elevated heart rate. He woke up to the sweetest card left by his night nurse with a Door Dash gift card. She wrote the most thoughtful and encouraging words to Eli and it made both of us overcome with emotion. He was hungry for food Monday morning and has had an insatiable appetite for fruit, specifically strawberries and pineapples. 

Dr. G made a visit and we were happy to see him. I will forever be grateful to this man and his surgical abilities and kind heart.

Dr. G. showed us Eli's x-ray. This is the compress mechanism that has replaced the femur/knee.

And here is the x-ray of Eli's hardware:

He got to keep his kneecap, which is over the metal.

Then there is a tibial stem that is fitted down into the center of the medullary cavity in his tibia to anchor it in place.

The tibial stem isn't 100% anchored in place and will allow a little swivel motion.

Richard is flying back to Boise tonight. Bella has been holding down the fort like the boss babe she is. I think Eli and I should hopefully get out of here by Wednesday. We are decreasing his dose of ketamine and will disconnect the IV catheter with the lidocaine tomorrow. 

This journey is not over and could be full of twists and turns, but there is nobody that I would rather navigate this bumpy road with other than our circle both big and small. Eli has had such an impact on everyone that he has come into contact with. He is such a strong fighter and his tenacity, resilience and determination shines through as he overcomes every obstacle, no matter how great. He has risen up time and time again and if he can't do something the first time, he challenges himself to try again or stand for a little longer, fight a little harder. He expresses his thanks multiple times a day for everything that he needs help with. He talks about how he wants to be a dad someday and all of the people that he wants with him when he gets to ring the bell. Sometimes this cancer doesn't feel real. Most of the time it doesn't feel real that it has happened to us. I am so proud of Eli everyday and grateful that I get to raise my hero.

SURGERY + HEALING + MOVING ON (PART I)

Our bodies provide some amazing protection in times of stress. I can tell that my body has been in fight mode. Eli's body has been fighting for months.

I hadn't eaten much in about a week after New Year's Day. I wasn't hungry and my appetite was non-existent. Turns out stress is an appetite suppressant. I kept waking up at around 5 in the morning feeling like my heart was on fire, full of adrenaline, ready to run.

This was a rough week in so many ways. Sometimes your body betrays you. Sometimes a nobody betrays you. But there are life lessons in everything and something that I have realized is that the Parker kids are resilient, strong, stubborn and determined with a fighting spirit that makes me proud to know them every. single. day.

Saturday night we got dinner with friends and all of the kids for a much needed night out. Eli hasn't seen everybody all together since he was diagnosed.

2025 is a year full of change for our family as we all move forward in realizing who we are, knowing what we want and what we don't want. Bella and I spent a lot of time together, engaging in some retail therapy and a trip to our happy place - the book store. The one thing about my daughter, is she knows who she is and who she isn't. She's also learning who she is becoming. I love her confidence.

I woke up on Monday feeling like the countdown was on. We had a referral to the Ronald McDonald House in SLC, but wouldn't know if we had an actual room until the day before, so I booked a backup hotel just in case. We also wanted to rent a car so that Eli would be comfortable on the return trip. I knew I needed to get a lot of work done so I plugged away and cried at my desk like a literal faucet all day, drippy with emotion. 

Eli started online classes on Tuesday. He will have science and history for the first quarter and then math and english the second quarter. His teachers and counselors are fully aware of his situation so he'll just have to communicate when he can't attend the virtual lessons.

I got the call Wednesday that we had a room at RMH and we hit the road at about 4pm and made good time. We were grateful for dry weather and clear roads, especially this time of year. We got settled in, got something to eat. I think I slept for a couple of hours and then was up the rest of the early morning until we needed to leave in time for the 5:45am check-in time.  

Primary Children's Hospital was just a 5 minute drive up the road and we got checked in. The team started making their rounds not long after - nurses, anesthesiologists, IV nurses and finally the orthopedic surgeon. I finally found a sense of peace after we talked to Dr. G and pretty soon it was time for them to take Eli back to the OR. I was finally able to eat something and felt hungry for the first time in days. 

The hospital has a Ronald McDonald "Family Room" which is essentially a lounge with comfy chairs, couches, kitchen, dining area, laundry, nap space and showers. This space helped provide a less clinical waiting area for the 9 hour surgery. The OR nurse called every two hours to give us updates on his vitals and the procedure. We got regular reports that his vitals were strong and stable and that he was doing amazing. At around 3pm, we got word that Dr. G. was finishing up and we could head down to the PICU waiting room. We spoke with him at around 5pm, went over everything, asked a lot of questions and he sent me pictures. The bone and bone tumor was O-U-T! 

We got to see Eli as he was not quite awake from surgery. What a relief, but I think I would have preferred him a little more awake. It took him a little longer to come out of it, and then he was shivering for quite a while despite a mountain of warm blankets. He started opening his eyes more. One of the first full sentences he muttered was "Dr. Groundland is a G!" and other sweet sentiments about missing his girlfriend. 

One of the nurses said "we're gonna need a new brain", in reference to the pole with all of the computers on it and Eli sat up alarmed and said "Whhaaatttt? I need a new brain? Haven't I been through enough?" We were dying laughing realizing his confusion and concern.

He currently has a nerve block into his groin with lidocaine and a PCA pain pump with dilaudid and some other things on board. He got some valium to help the muscles relax. 

This is the hardware that is now in his leg. One of the challenges during surgery was the titanium rod that is placed down into the tibia was not fitting right because Eli's tibia isn't fully straight so that took some extra time. Then the metal hinge "knee" sits on top of a plastic piece and is anchored in place by the compress implant in the femur, where they created a space for it to fit, anchored by some pins that screw in to the bone. There are a series of washers that are tightened to a specific torque that will create bone hypertrophy, according to something called "Wolff's Law", which states that bones will adapt and cause the spongy bone to strengthen and grow onto the implant. This process takes time for the bone to achieve osseointegration and the bone growth will be slowed down by chemo. 

Eli's vitals have stayed pretty stable post-op. His nurses have been super attentive. His blood pressure dipped the first night so he got some extra fluid. He was able to sleep for a four hour stretch and I guess I did too. We were up pretty early as the PICU is not a very restful place, which is to be expected with so much going on at all hours. I was grateful that I got to stay with him because we weren't sure if that was an option.

He got some x-rays Friday morning and ate a couple bites. Then we got transferred to his room on the third floor, which was a little more private. He stayed awake most of the day, taking some naps and watching football. 

He had a mostly restful night Friday night and slept a lot. The balance is that we want him to sleep but then he isn't aware of the pain and isn't pushing the pain button so then he wakes up and we have to get on top of it again. They are also giving him some valium for any muscle spasms, since some muscle was removed where the biopsy tract was performed. We woke up to snow on Saturday morning. He ate a few bites of breakfast and napped for a bit.

He was able to transition to oral pain medication now that he is able to tolerate food. PT and OT stopped by at around 2pm to work on getting him to be able to sit on the edge of the bed. They were a really sweet team and helped him get all kinds of things done. Sitting for just a couple of minutes was enough and he returned to a comfier position. He is currently taking a combination of valium, ketamine, tylenol and oxycodone. He ate some dinner and watched the Chargers lose. We had a situation with his IVs and a little IV infiltration and his hand swelled up like the hulk. It was a bummer because they should have been able to access his port, but we had some disagreement over what exactly they should do.

We should be here for a couple of more days. We were told to plan for five and want to make sure that his pain is managed and recovery is underway and he is able to get out of bed and move. We will forever be grateful to Eli's surgeon and everyone who has cared for him round the clock. Thursday was so rough and the messages of love, support, care and spiritual uplifting kept us on track. 

I will post another update once we are home and settled in.