HAIR + FAMILY PHOTOS + SLC

It's been a week and it's only Tuesday.

Monday was gloomy, which is fitting because it feels like there have been a lot of stormy days mentally and emotionally recently. The trees are starting to lose their leaves, barely hanging on to their branches, just like my sanity some days. The vibrant colors of a short-lived fall are starting to fade, but we have hope and that isn't going away. Sometimes when it rains, it pours so we will brace for the gloom and prepare for sunnier days ahead.

Our family pictures were scheduled for 4:40pm and it was raining. The day before was a beautiful fall day and that just goes to show how quickly things can change and how some things in life are just out of our control. Our photographer messaged me and said she thought it would let up soon and asked if I still wanted to go for it. I said "Let's do it!" and we did. The rain paused long enough to finish pictures. The weather is temporary and will change again. It's just a temporary storm cloud hovering above us during this season of life and I know it'll eventually pass through.

We came home and shaved Eli's head. Then a pack of his best buddies stopped by with their new hairdos and Eli told me his coaches have a few less strands as well.

#PACKSTRONG

Now accepting suggestions for their band name...

The Buzz Boys
Rusty Razors
Shaved Ice
Bic Six
The Missing Strands Band

I have another really really good one, but this is a family blog. 😉 

This morning Eli and I got up early and I stopped to vote on our way out of town to Salt Lake City to the Primary Children's Hospital to meet with the Sarcoma Orthopedic Surgeon from Huntsman Cancer Institute. We had a slight hiccup with an oversight with our appointment not being scheduled, but they fixed it and we eventually got going. Dr. G. was super thorough and knowledgeable and works on an average of 20 osteosarcoma cases a year. He told us that he had spent a lot of time reviewing the MRI images and looking at Eli's case from every possible angle. He went over the images with us in great detail and discussed the options for surgery. Based on what we are dealing with there are a couple of different options with pros and cons to each. After this next cycle of chemo and the follow-up MRI scan, we will have a little clearer picture and know how close the tumor is to the knee. 

Happy Little Roadtrippers

In the Driver's Seat

A Fan of All the Selfies. All the Time.

If anyone is curious, this is what the tumor looks like in the bone. This is looking at the back of the leg.

Rear View

Side view of the leg. You can see the tumor and how close it is to the knee and how it has grown out of where the femur bone should be and extended into the surrounding connective tissue. The leg is very angry and there is a lot of inflammation.

Side View

We go back to clinic on Friday to check counts. If they have rebounded, we will be admitted and begin the next dose of chemo on Friday. This particular drug takes longer to clear the body so we may be admitted for a couple of extra days. I hope that Eli feels well through this one. The biggest side effect can be mouth sores and that will interfere with eating and he has been eating so well these last two weeks. I've been making him a lot of smoothies lately, without bananas because he is not a fanana of the banana. So maybe there will be a lot more smoothies and protein drinks coming up.

Eli has continued to just take things in stride and roll with the punches. My hope for him is that he continues to find strength even when he is feeling weak; that he can continue to weather the storm even when he is getting pummeled by everything that is uncomfortable. I want him to find courage even he is afraid and scared for what the future looks like with treatment, recovery, surgery and the aftermath of this battle. He's going to be a wounded soldier, but how he is approaching and rising up to the challenge is what will ultimately define him and teach him things about himself that he never knew he was going to learn at such a young age. He's going to have scars. I'm trying to look at this as not what is being taken from him, but what he is gaining and sometimes it's a hard shift in perspective. I know that there are going to be setbacks and it's hard to anticipate them before they happen, but I guess we are as ready as we can be. 

2

Eli's baseball jersey # is 2.

#2 plays hard. He always has. He broke his arm a few years back sliding into home plate, head first, on a suicide squeeze play to win the game. We had a double-header and I thought he was ok to play in the second game. You know, rub some dirt on it and you'll be fine, but it was broken. I wish we could rub some dirt on this cancer. Maybe that's what chemotherapy is - the dirt. 

One of his baseball buddies supporting Eli on the football field.

Eli had a routine appointment today for a blood draw. We will do these weekly to check his counts. We expected them to dip around day 10-12, and it's been exactly 2 weeks since his first treatment. His counts were low, especially his neutrophils and he is considered to be neutropenic at this point. The good news is that this should be the lowest and they should rebound. We need them to be above 250 by next Friday in anticipation of his next treatment.

His hair started falling out this morning. He can literally just tug on it and it comes right out. He said that his scalp felt really tender and sore and then he noticed that he was losing hair. We will probably shave it early next week. We have family photos scheduled for Monday and I was hoping it would hang on until then, but it is what it is.

Semper Paratus!

Wearing the Coast Guard shirt that our buddy Farmer sent while waiting for our appointment. Semper Paratus is the Coast Guard motto that means "always ready". It's a good motto for life. Always ready because you never know what might happen or what curve ball might be thrown your way. We can hit curve balls. 

Despite Eli having low counts, he headed to the Boise State game tonight. A very generous hook-up organized by the greatest friend secured some sweet seats and pre-game field access for Eli and a couple buddies. Eli got to meet and pose for a photo with another amazing #2 - Ashton Jeanty, running back for the BSU Broncos and Heisman contender. What a super cool opportunity.

2 Strong!

I was concerned about Eli going to the game. Not because of his leg, but now because of the risk that being immunosuppressed presents. We discussed it at his appointment this morning and they said that he should go. We are going to have to find our balance with what we are comfortable with doing. I don't want to be consumed with being so worried about worst case scenarios and forgetting to focus on living. It's these moments and memories with his friends that provide hope. He spent the whole game on the sidelines, talking to different people and soaking in the moment. 

I think his cheesy grin says it all.

Hopefully he's forgiven me for sort of backing in to his new car on the way to the game. It's been a long day. But tomorrow is a new day and cars are fixable. And so is Eli.

HALLOWEEN

 Ocrtober 31. 

There seem to be two different camps on Halloween. Those that dress up to be cute, finding an escape from reality and adopting a different persona. Halloween is a break from reality, a chance to embrace something that you are not. A chance to escape and pretend. For others, Halloween is an opportunity to delve in to the dark and scary....a day to embrace things that are unknown and spooky. 

There has been a lot of unknown and scary during the month of October. 

But, today was a really good day.

This last week has been uneventful. Eli's appetite is back in full force.

He's been getting caught up on school work. Peep the emotional support dog, who needs his own emotional support dog.

Oh, and the Dodgers won the World Series!

Eli has gotten to take back control by way of getting behind the wheel again.

It is important for him to take control of this diagnosis. To feel that he has some say over how he will approach the scary. I am realizing that I have a very stubborn child and I don't hate it. He is determined and strong and his web is constructed of the most awesome fibers of resilience and determination. He is a fighter and will not back down or cower against the toughest opponent. I am in awe of his fighting spirit.

He got back behind the wheel a couple of times this week and today he drove himself to lunch at Gamma's. Lunch at Gamma's is the most special of the specials. Gamma is everybody's honorary Gamma. Gamma adopted Eli from the get-go. Gamma was cheering for Eli in all of her bedazzled bling before I even knew who Gamma was or which awesome kiddo she belonged to. Gamma comes to all of the games. Gamma is style. Gamma hosts lunch on Tuesdays and Thursdays. Gamma's crowd is growing. I want to be Gamma when I grow up.

Eli's Thursday Support Group

This is Gamma.

Then we went to the annual baseball Halloween game. This was bittersweet. Eli has participated the last couple of years. I know he wanted to be out there, doing what he loves. But the next best thing was being on the field. It was a cold and crisp day. It sprinkled for a minute and then the sun returned...the promise of light in the midst of the darkness. The cold is good. It's the cold that makes you feel alive.

Tonight he went to the movies with his girlfriend to see a scary movie. Letting go is hard. Trusting is a challenge.

I just want to keep him safe and watch over his every move and hardship.

I feel like I finally reached a place where I was comfortable letting go. Comfortable with letting him make his own decisions. Comfortable with the consequences of actions and trusting that all of the time and effort that I put in was paying off. Now I want to wrap him in bubble wrap. Worried about his leg. Worried about getting sick. Worried about the unknown. But I know that I can't let my worry prevent him from living.

Halloween is an opportunity to be someone we are not. To dress up in character and pretend to be a super hero, an icon, a character that maybe we aren't or never could dream to be. It's hard to pretend to be strong. You either are or you aren't. 

My hero is Eli. He has been unbelievably strong and courageous. Never complaining or wavering in his strength and acceptance of this otherwise really unfortunate hand that he has been dealt. I won't pretend that this isn't hard. That this unforeseen change in circumstance isn't terrifying and scary. But he has tackled it head-on and with such unexpected bravery. Cancer is the villain, whether it wants to be or not and I would choose Eli as my costume time and again. 

Trick or treat.

Cancer is the trick and the battle is trying to figure out how to beat it.

WEEK ONE AND DONE

Food brings people together and one of Eli's favorite things is eating. He's been a food enthusiast since 2008 and "getting food" is a hobby. If we need to run an errand he always asks, "can we get food?" On the way home after a baseball game, "can we get food?"After a doctor or dentist appointment, "can we get food?" He's lost about 10 lbs in the last little stretch here, but Wednesday was a good eating day and some of his buddies and baseball teammates dropped off Panda Express. I'm sure that they all love ending up on this here blog. 

I've been the most worried about how treatments, surgery, anesthesia etc. would affect Eli's appetite knowing that food is his favorite and it makes me sad that nothing sounds good, so I am sort of going out of my way to say yes when something actually does sound good and then will try to sneak in as much nutrition as possible.

I know how important it will be to keep him as strong and healthy as we can. We need and want him to be #ELISTRONG, just like these amazing bracelets that our friends made for us to support Eli. Each time I look down at them on my wrist I can't help but feel like we've got this battle.

Bella had an asthma flare-up this week that came on literally overnight and was accompanied by some wheezing, so I grabbed her from school to get checked out at the doctor while Eli stayed home and slept in. Some asthma meds and an inhaler refill should hopefully get her on the mend soon. We are definitely meeting our insurance deductible this year! It never fails that she gets bronchitis every couple of years and the recent turn in cold weather hasn't helped. I checked in on Eli on our way home and compromised on his request of cookies and cream ice cream in exchange for a breakfast sandwich first. He is taking the doctor's comments of letting him eat whatever sounds good, quite literally.

I got out of the house and went to the district football playoff game last night. The theme was "Wear Yellow" to support our little minion and Timberline ended up winning in dramatic fashion in OT with a 2-point conversion. It was a good distraction, even though it was chilly.

Today we headed to our clinic appointment to get Eli's port accessed for the first time doing some out-patient blood draws to check his counts and follow-up with the oncologist. This is going to be a regular thing to check his white & red blood cells, platelets, neutrophils and more to make sure his counts aren't dropping too much and that they have recovered enough before the next treatments. So far they looked really good today, but he went in to this first treatment at his healthiest and they usually drop around Day 10. He's had a little ringing in his ears the last couple of days, which is caused by the Cisplatin that permanently damages the hair cells.

He was hungry and wanted Costco pizza and I figured I could pick up a few things. He ate a few slices on the way home and has felt pretty good today. It was nice to get out of the house and I told him that he can get back to driving and going for a cruise on days that he feels good enough. 

We had a crockpot full of awesomeness and some frozen enchiladas delivered by Cobes. Food is a language that everyone speaks and it is really nice that people are communicating with us through meals. It really is nice to not have to think about one more thing a few days a week. My sweet longest and oldest friend ever sent a beautiful yellow-themed flower arrangement with sunflowers and Eli finally got his CHIP cookies, because "chip happens". 

Thank you all for loving us and loving our boy.

#ELISTRONG

I don't know what else to do, but create, so I designed some hoodies, sweatshirts and tees to spread awareness about osteosarcoma. Some friends and family have asked if they can order, so I created this little storefront. 💛 Bella came up with the bELIeve.

TUESDAY TUESDAY

WELL, Sunday sucked. 

Eli didn't have much of an appetite on Sunday, which was to be expected. Overall, he was just feeling weird. Fortunately, this dose of treatments only happens once every 5 weeks and he'll do 6 cycles total, so Round 1 of Cycle 1 is over. Ding Ding.

Monday he slept a lot and ate a little. It's hard when nothing sounds good. I was able to get him to eat some sourdough toast and a popsicle and one of sister's chocolate chip cookies.

Tuesday he ate a little more - toast, apple, popsicle and some protein shake. He's usually a pretty good patient, but lack of food and energy was making him grumpy. He did eat some Chick-Fil-A nuggets and fries Tuesday evening and hung out with his favorite person. I could tell he was starting to turn a corner last night.

He's been sleeping well though and isn't in any pain in his leg or chest after the port placement procedure. He hasn't needed any pain meds since last week and only had Tylenol in his IV on Friday and hasn't needed anything since.

We had our post-op appointment this morning. His leg has been wrapped and in a brace since the bone biopsy with clear instructions that the orthopedic surgeon would be the first one to look at it. I started spiraling while we were waiting, worrying about all kinds of things since it's been 13 days, so I was really relieved that everything is healing nicely and looks good. He will still wear the brace for support, but can take it off now to move and bend his leg and he can shower! He said he was actually hungry as we were leaving and ate a cheeseburger on the way home. Don't judge.

The final pathology report is back from John Hopkins and the bone/soft tissue expert agreed with the St. Lukes pathologist that Eli has telangiectatic osteosarcoma (TO) and that it is Grade 3 of 3. If osteosarcoma is rare, then telangiectatic osteosarcoma is even more rare, accounting for between 3-12% of osteosarcoma cases. What the actual f-word. Special Teams, Special Players, Special Sarcoma. The orthopedic surgeon has removed several osteosarcoma tumors, but this is the first TO case he has seen. He is recommending (and we agree) sending to Huntsman Cancer Institute in Salt Lake City for second opinion. Hopefully we can get in touch with them soon to discuss our options and to find out if they would do anything different. Huntsman has oncologist/surgeons that are specific to osteosarcoma. I will drive to the ends of the earth if I have to. 

Source: Teleangiectatic Osteosarcoma Info

We also met with Eli's school counselor last night and he chatted with Eli a bit about everything that he and Eli's teachers will do to make sure that he is able to finish the current semester and complete his core classes, but then he will begin the second semester just doing online learning. It is just too risky to send him to school and possibly fracture his leg or get sick and delay treatments. I know he'll miss the social aspect of school, but that's been the furthest thing from our minds lately.

MISSING IN ACTION

Last night Eli's treatments went "missing in action". They weren't brought up with his other meds and they weren't in the pharmacy. After some investigating, it was determined that the order had never printed in the pharmacy and so the treatments were never made or delivered. He was supposed to start everything about 8pm, so this delayed the treatments by about two hours, which was ok, but made for a little longer night. We finished watching the baseball playoffs while the Yankees beat the Mets to go on to the World Series. 

Do you know who isn't missing in action? Our tribe of supporters, including food delivery folks, family & friends who are checking up on us constantly, our loved ones offering to run errands and tackle whatever need we might have and everyone near and far who is praying, lighting candles, sending messages with positive healing vibes and good energy. We feel all of the love and support and it helps in so many ways.

Richard brought Bella for a visit and she brought Eli some of her homemade chocolate chip cookies. 

Richard relieved me of my hospital duties and I ran home for a little refresh and a quick errand to get a few drinks for the mini-fridge in our room. While I was gone, Coach T (one of Eli's coaches and his first Timberline coach when he was in 8th grade) stopped by to visit with Eli. Coach T has the best energy and spirit and just exudes fun and positivity. His Dugout Dances are my favorite to watch from the stands and he knows how to connect with the boys in all the best ways AND he is always ready with a mean PB & J if you ever need a late night snack in Walla Walla. We are grateful that Twisted T isn't missing in action, especially when rapping "3 chicken wings wit da fried rice".

Riley & Cheryl also came for a hangout and Riley brought another LEGO car.

They hung out and caught up and chatted about college and future careers. Eli eventually fell asleep holding Riley's hand. I am so glad that they have each other and that Riley and Watermelon Gatorade aren't missing in action.

Our family moved to Boise just over five years ago. It was the summer of 2019 and Bella was about to start 7th grade with Eli finishing up his last year of elementary school. I vividly recall attending a back to school parent meeting in the gym of the junior high, observing all of the moms and dads greeting each other and chatting about where they went on summer vacation. I felt like a fish out of water and so alone, not knowing a single soul while everyone else seemed to know each other. It feels surreal looking back, feeling like a total stranger amongst familiarity, in stark juxtaposition with how we feel now. 

Looking back, it feels so long ago, but like yesterday at the same time. I've always said that baseball is special. You spend countless hours in the stands, on the sidelines and waiting around between tournament games. Your baseball friends become the family that you didn't know you needed. You coordinate rides, volunteer in the snack bar together and groan over the same bad calls behind the plate. Pretty soon your kids are best friends and so are their parents. I know that all of our family wish that they could be here too, and so do we. 

Treatment finished sometime in the early morning hours with several round the clock vitals and check-ins. I've been sleeping pretty well. Eli had a hint of nausea mid-evening, so we got ahead of that and so far, so good. He didn't have much of an appetite for dinner. Once the doctor makes rounds in a bit, we should be able to blow this popsicle stand and get back home. He will not have any treatments Week 2 or 3, just some appointments to check his counts and some follow-up visits with the orthopedic surgeon. Now we just settle in and prepare for Week 4.

My mama promise to Eli is that I will never be missing in action. I will be by your side every step of the way, whatever you need, I will do it. Forever.

And, I CANNOT wait for the day that this osteosarcoma is MISSING IN ACTION.