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.

PORT PLACEMENT DAY + Week 1 Day 1 Chemo

I met up with my cousin, Jenny, this morning to walk down by the river. It was dark and cold when I left the house and after 3 miles of breathless catching up, the darkness had subsided and there was light. I can see the light. It's the dark that is hard and I have to remember that the light is there, even when I can't see it. Even when I'm facing away from it. Even when I can't feel the warmth.

Eli had surgery for his port placement today. People are starting to recognize us at the hospital and we have quite the collection of wrist bands. The surgery went well and Eli recovered from anesthesia while making the nurses laugh. His first question when he first woke up was, "How'd I do?" and when they told him he did good, he replied, "SWEET!" His recovery nurse was great and she was a Buffalo Bills fan and Eli had some opinions about her football team and was quite chatty, asking her if she was from that area. Before he was wheeled back to surgery he told us that he wanted some chocolate chip cookies soon, and after anesthesia we had a conversation of which cookies are better Crumbl or CHIP. He then said, "I remember when Bella got a job at Crumbl, I was so proud of her..." Then Bella sent me a picture of what she was doing. Coincidentally, she was at home baking chocolate chip cookies and is going to bring some to Eli tomorrow when she visits. 

His appetite came back and he was able to eat and get comfortable in our room for the weekend in the peds oncology unit. They have started him with some IV hydration to make sure his kidneys are nice and flushed as well as some anti-nausea meds and he will start his first cycle of chemo tonight.

Recently rediscovering his love of LEGOs, Eli has put together two cars in the last couple of weeks and asked for another one on Tuesday that he finished last night. He says that there is something relaxing about working on them. While we were waiting in pre-op today he texted me another car that he wanted to build next, BUT I had already picked one up for the hospital stay so I pulled that out once we got settled in to our room. Assembling the Porsche has been occupying his time most of this evening. 

In a little bit he will begin Week 1 Day 1 of chemo with two different medications and a third to protect his heart. I feel like I am going to measure the rest of this year in terms of "weeks". His 1st Cycle will include Week 1 with Chemo A and B (1-2 days) and then 2 weeks off for Week 2 and Week 3. Then Week 4 and Week 5 for Chemo C (3-? Days) and that's the end of the 1st Cycle. Then the 2nd Cycle repeats with Week 6 for Chemo A and B, then off for Week 7 and Week 8 and then finishing with Week 9 and Week 10 with Chemo C. If everything goes according to the plan, he would finish the 10 weeks right before Christmas.

I have been a little nervous about starting all of this going into a cold, wet winter. Winter is not my favorite season and it lasts longer than I would like, but winter has a purpose. Winter can be harsh and reminds us of the resilience of nature and the human spirit. Winter forces us to adapt and get used to shorter days, colder weather, less time spent outdoors and more time spent resting and recovering. Winter won't last forever, even though it seems to drag on. I also know that this season of life isn't permanent and I will look back at how far our family has come and how much rebuilding and regrowth happened during this time of uncertainty. This year, I will lean into winter. I will allow winter to teach us that we are resilient, that we are prepared and that we just need to trust the process. Winter has to happen so that the Spring will be full of growth and change.

ECHO + EKG + HEARING TEST + PET SCAN

This month has been a whirlwind of non-stop appointments. Eli has had an appointment on Oct 1, 2, 3, 4, 7, 8, 10, 15, 16, 17 and surgery and chemo treatment on 18. Breathe. Rinse. Repeat.

Eli had an Echocardiogram yesterday to look at his heart and take some pictures in anticipation of beginning treatment. The power port he will have placed will be threaded into the super vena cava vein and deliver the chemo drugs to his heart, which will be dispersed through the rest of the body. Some of the drugs have a risk of damaging the heart and so another drug will be used to protect the heart. So we need to see how his heart looks now and will continue to run periodic tests to make sure everything is still okay. He had an ECHO a couple of years ago after his pediatrician detected a heart murmur, which turned out to be innocent/benign. Today's tests were within normal limits. 

One of his best friend's brought lunch to him and they watched TV and Chipotle'd together. Yes, it's a verb. It means "To Chipotle - to eat lunch with your friend and get permission from your English teacher to return to class late once a week because you are a thoughtful human." 

I can't help but marvel at how much we know about the human body and all of the tests, machines, imaging that give us insight into processes that are happening inside all of us. Everything is so perfectly designed and it is so easy to take for granted the amazingness that our bodies are and what they are capable of. Yet everything has to be working just perfectly in order for the train not to get derailed. Somedays my train is barely staying on the tracks, but we have a path and I am determined to stay on course.  

I keep thinking about Eli's type of cancer. I know that we've been told that there wasn't a specific event that could have caused this, but I want to know more. I want to know at what point it began. If there was one osteoblast just laying in wait, lying dormant ready to strike. I am curious if something just went wonky and then spiraled out of control, but when, where, why. I know that we will never know. I am aware that it doesn't matter and knowing won't change things, but I'm nosey. That's how I roll. I want to stalk this cancer, but it isn't on social media.

I feel like October is flying by and I can only hope that these next 7 months pass just as quickly and as uneventfully as possible. October has always been one of my favorite months. Today was my birthday. I honestly forgot that it was today. To me, Thursday was hearing test and PET scan day. Not the 17th of October. Today isn't about me. This month isn't about me. The world has stopped still even though everything is still spinning. Today was about Eli. Today was learning Eli's hearing is perfect despite some inperfect listening skills. 

Next was the PET scan. Eli had to fast for 6 hours before the appointment, which meant ALL DAY. He couldn't have carbs, fruit, sugar or starch yesterday or exercise because the PET scan injects radioactive sugar that settles into hotspots measuring abnormal cellular activity. There might have been a garlic bread incident. I hope it didn't throw anything off by too much.

Today was a double rainbow and Buffalo Wild Wings.

Today was friends stopping by with a plant, wine and upside down pear cake. Today was Eli's coach stopping by to visit and watch baseball. Today was a Dodger WIN.

Today was a duffle bag filled with goodies from special baseball families to make Eli's treatments as comfortable as possible and a special gift for us parents to make our stay the best from Riley's mom & dad.

Tomorrow is a step in the process toward getting Eli better. Tomorrow is uncertain but filled with hope and determination and fight. 

Tomorrow the countdown begins to get Eli one step closer to living the rest of his life. 

ONCOLOGIST

I never wanted to have a meeting with an oncologist. No offense to the doctor we met today. I'm sure most of us would be a-ok without ever having to set foot in a cancer center. But here we are and here I sit with my post-visit notes and my head swimming with new information, new medical terms, new protocols. It's all so new new new. 

I knew today would make everything more real. It hit me last night the weight of everything that Eli is going to face and that we are going to face along side him. I wish that I could go through it for him. I would trade places with him in a heartbeat. 

Today was an early morning out the door to meet with the oncologist and go over where we are at and where we are going. We are currently looking at a total of 29 weeks (7 months-ish) of treatment beginning with 10 weeks of chemo (two cycles) with three different drugs. Then the surgery at the beginning of the year to remove tumor and reconstruct the bone with a couple of weeks off to recover and then finishing with 19 weeks of treatment for a total of 6 cycles. That should put us at the end of May/early June depending on whether we have any delays. 

We got to ask a lot of questions and Eli was right in the room with us to go over everything. I've had to limit my internet searches because although I like to KNOW everything, I kinda don't want to know EVERYTHING. I'm mostly curious about the disease process and what osteosarcoma exactly is and how it starts, so we asked some questions and got some clarification today. Osteosarcoma isn't a fleshy, squishy tumor or lump, it's a tumor of unhealthy bone that forms in the end of long bones during periods of rapid growth, like puberty. The immature bone cells start growing unhealthy bone that is weaker and not normal bone, but it overtakes the healthy bone. There are only about 1000 cases of osteosarcoma annually and 500 in teens. Eli is 1 out of 500. I knew he was special, but this is SO extra, sunshine. There aren't really any genetic factors, but there are certain genetic conditions that can lead to risk factors. Certain factors like previous chemo, radiation can increase your risk factors, but none of those apply to Eli. Eventually we will do some genetic sequencing/testing to see if there is anything else going on, but most likely this is some random event that got underway and there is nothing that we nor Eli could have done, foreseen, predicted, prevented. 

We also got to meet with a social worker who discussed some financial programs that we can apply for to help offset treatment costs. Eli can also take advantage of some counseling sessions.

This week we have a hearing test and ECHO + EKG and then the PET scan on Thursday, which will further localize exactly where the tumor is in the leg. 

He has surgery scheduled Friday for the port implant and then will be admitted for the beginning of his first treatment cycle over the weekend. This one will just be two days. 

Upwards of 70% of patients become survivors of osteosarcoma depending on how they do with treatment. I'm mostly concerned with him feeling poorly and all of the other chemo side effects so we will just support his immune system and body in the best way that we can. 

Eli has a sister named Bella. She is a senior and is 17 months and 1 week older than him. Her brother was her first friend and her best friend. She told me that she's always remembered how to spell the word believe because it has ELI in the middle of it. The sunflower, my favorite flavor, is the flower of osteosarcoma and butterflies are the symbol of bone cancer. I bELIeve that Eli will have an amazing story of strength, bravery and fight after all of this is behind us and as Bella says, he will have one amazing college essay of overcoming adversity.

FIRST WEEKEND POST-OP

Friday was a pretty good day. I was able to get some work done, even if it was from the comfort of my bed. I made a portable gaming station by putting Eli's gaming monitor and XBOX on a rolling cart so he could play some Rocket League in the living room. His pain was pretty manageable and his laughter while he was watching the Tom Brady roast was music to my ears. I made Indian food for dinner and we relocated Eli to his room and he played some games with his friends until he went to sleep. 

Oh, and the Dodgers won. Eli was rooting for them, so there. 

However, he called me at around 12:45am as medication was wearing off because he was in pain, but his next dose of Tylenol wasn't due for another almost hour. We were also given something stronger if the pain got worse with direction to take 1-2 pills, so I gave him one of those but he was still in pain and couldn't get comfortable. I decided to stay the night in his room so I could keep a close eye on him. He did pass out for a couple of hours, but that was about it. Neither one of us got much sleep. 

We decided to up the dosage to 2 of the extra strength pain pills and that seemed to do the trick. He was able to take some cat naps on the couch and was in much better spirits. He got a special delivery from Crumbl from a friend/baseball teammate. THANK YOU A.Mes!

One of his bestest and oldest friends stopped by in the evening with some goodies and to hang and watch some college football with him. 

I assembled his shower chair (thank you, Amazon Prime!)

His appetite was good, but not quite putting it away like he usually does. 

More buddies stopped by to watch the BSU game with our couch potato.

Saturday night he slept on the couch and got a little bit more rest in, but was still feeling pain in his leg requiring taking the full dose of pain pills. 

On Sunday we rearranged his room and moved his bed to the opposite wall, where he has wanted it for a while. We got him a TV and I assembled a new console table. This new layout makes the room look much bigger and now I have to go in there if I want to see him. His room is also staying really clean. ;) Riley came over and spent time time watching TV and hanging out.  

That brings us to Monday (today!), which was the best day he's felt thus far. His appetite seems to have fully returned and he was hungry and then still hungry. I will cook for him forever. He had the Dodger game on and I printed out a picture of Max Muncy because Eli complains every time he's up to bat. 

One of his coaches brought by everyone's favorite - Chick-Fil-A, which was super nice and he got to visit with Eli for a few minutes.

We got a sweet delivery of a yummy box of goodies to reheat and stock the fridge and freezer. 

The best thing about today was dialing back his pain meds and hearing him playing games with his friends and making his silly voices.

We meet with the oncologist tomorrow morning. The prelim pathology results of the biopsy have confirmed osteosarcoma. The stage/grade will be determined by another lab to determine size of tumor cells and how fast they are growing. This week might be our last normal-ish week before everything starts to get even more real. 

Thank to everyone who is checking in, reaching out, dropping by, praying, lighting candles and keeping Eli and our family in your thoughts, hearts and prayers. We can feel the love and support from all of you and it is giving our boy courage and strength.

I will update tomorrow once we know more. 

BONE BIOPSY

Yesterday wasn't awful. I went on a walk with the bestest friends and had lunch with Riley's mom. She bought me lunch and said that I could return the favor in a year when we are celebrating Eli's recovery. She has been such a bright spot through all of this. [[[Hi Cheryl]]] Everybody has. The support and rallying behind Eli shows me the impact that he has had on those that have been lucky enough to meet and get to know him. 

Eli had a bone biopsy surgery performed today to take a section of the tumor to determine grade, which is looking at the cancer cells to see how aggressive they are. We checked in at 10:45am for a scheduled surgery at 1:45pm. We were able to go with him during pre-op and wait until his surgery. He got a nice aromatherapy lavender patch on his gown and relaxed by watching Sponge Bob. 

He told me he wanted to go to the football game tonight. Sadly, that just isn't going to happen. Aside from the physical pain and symptoms of treatment, one of the hardest aspects of all of this is going to be missing out. I think the only reason he goes to school is to socialize and see his people. I know he will still see them, but he is going to watch as everyone else goes about their normal life. I know my job is going to be to make him feel as "normal" as possible and I will try my best. 

Max brought over some beautiful hydrangeas yesterday. 

Eli also spent some time with his girlfriend last night and came home in quite a bit of pain as the meds were wearing off. It took a while to get him comfortable with some ice, more pain meds and elevation. He still had to take his antiseptic shower to get as germ-free as possible so he did that and got into some clean clothes and freshly washed sheets. I gave him some more Tylenol at around 4:30am, but he said he actually had a good night of sleep and has to repeat the antiseptic shower this morning. Probably the cleanest he's ever been!

I was looking at old Facebook posts and these stuck out to me that perfectly capture Eli.

His surgery started a little later than planned. We had amazing nurses and an even more amazing hospital gown. It was giving "Minecraft'.  His anesthesiologist was funny and everyone was very thorough in making sure he was comfortable. 

We waited in the surgery lobby for longer than we thought. When we checked in we were told the surgery would take about 1.5 hours but then the doctor said he didn’t think it would take more than 30 minutes. I’m sure there were additional factors we were unaware of, but you can’t help but spiral when a surgery takes longer. Your mind has the tendency to wander in dark places. 

We were then called to the consult room to meet with the surgeon and that took an additional very long 30 minutes. But he finally joined us and let us know he did great and everything went well and the got what they needed and would be calling us back to recovery. 

Recovery Eli was funny. He was giving groggy confusion and was such a vibe. :) We got some food on the way home because he was starving and once settled in at home, the anesthesia continued to wear off and he was feeling really good. He has a wrap on his entire leg that is basically an ice pack connected to an ice machine that circulates ice cold water. He has to wear this until we meet with the surgeon in a couple of weeks. I hope he likes Sponge Bob Sponge Baths. 

We have a pretty good pain plan in place and hope to stay on top of any discomfort as much as possible. I think we were all a little stressed about today and are glad that it’s behind us. 

He had a friend stop by with a huge basket of snacks and Riley came to see him with a sweet gift basket of her own.

It’s one thing to love your kid more than life itself. It’s another for other people to love them too. 

I will post again after our appointments next week and results of the biopsy.

Test Results

I stalked Eli's MyChart all night and before I said goodnight to him he asked me if I would let him know as soon as I found anything out. It's tricky when results populate into a chart that haven't been read by your medical team yet. It can either be good or potentially really bad. I went to sleep not knowing what we would find out in the morning. We had an appointment scheduled at 10:30 am with the orthopedic surgeon. Not long after I woke up I got an email that the results were ready. The best words to read were "no evidence of metastatic disease". That was the best possible result. Eli had a cold last week that I was hoping was just an upper respiratory infection, but the fact that he was coughing was unnerving to me. His cough is now gone and he is feeling much better.

Eli told me that he was really nervous to meet with the doctor. We headed there and spoke with the orthopedic surgeon. The next step is to get a bone biopsy, which will confirm the osteosarcoma, as to which of the several types of osteosarcoma we are battling and the stage and grade. We got to see the MRI images, which were just ugly, but medically fascinating at the same time with what modern technology is capable of. Eli's bone biopsy surgery is scheduled for Thursday. The ortho surgeon let us know that osteosarcoma is rare and St. Luke's gets maybe 1 case annually. His best guess is that this has been growing for about a year. We have a PET scan scheduled for 10/17 that will check Eli's metabolic activity. He will then begin chemo treatments for a few months before surgery to remove the tumor and bone and rebuild/replace the bone/knee and then follow with additional treatments for approximately 6 months.

Today was good and bad. Good that we didn't get any worse news, but the reality set in regarding the length of treatment, surgery and knowing that he won't be able to play ball. One of my greatest joys has always been watching my kids do what they love. There is nothing Eli loves more than baseball. He has been obsessed with the game since he was a little boy. It doesn't matter how early the game or practice. I never have to remind him. It's the one thing he has always prioritized and he gets to do it with all of his best friends. He has met his bestest buddies through baseball and we have met our bestest friends. 

This is going to be a long road and I was waiting until after we met with the doctor to share with everyone we know about what is going on so today has really been emotionally draining. 

The good: We are surrounded by love. People have stepped up in amazing ways to offer countless efforts to support our family. Our kids have the best people in their lives. I am blessed to be able to work remotely from home and can take my work anywhere. I am lucky to have an understanding company that puts people first. We are grateful to exist in a time where modern technology can provide answers and treatments.

The bad: The unknown is scary and dark, but we are fortunate. Humans are resilient. It's amazing what the human spirit is capable of when tested. 

I love my kids more than anything on earth. My greatest accomplishment and badge of honor are these beings that I was entrusted to raise. They are better than me. They are the best parts of us. My only goal is their health and happiness and I will go to the ends of the earth to make sure that they are okay. Always.

Bone Scan & CT Scan

Monday morning was busy and we headed out for the first appointment of the day for the bone scan. Eli had to get another IV, this time with radioactive isotope with a phosphate marker. I could tell he was starting to panic a bit toward the end of the injection and although he said he was fine to leave the chair, we had to hold him up as he slumped against the hospital hallway wall. We had to get some assistance (Thanks to Kyle!) with getting him back to the room and elevating his feet above his head. It definitely wasn't a good look to have a patient sliding down the wall out in plain sight. He started feeling better after water and a wet cloth and was ready again to get the heck out of there.

We then had to wait a couple of hours while the phosphate absorbed into his bones. Any areas with issues would light up as hot spots. We spent this time by getting some food and a LEGO set that he wanted to build while we were waiting. 

We returned at 11am for the bone scan, a huge expensive spaceship of a machine. The scan took about 30-40 min with a panel moving both below and above Eli's body taking images of his bones. I could see them all fuzzy-like on the monitor. It took images of his full skeleton and some close ups of his knee. 

Fortunately, I got to be in the room with him for this scan and he didn't have to keep his head still once the machine moved away from the upper part of his skull.

We then came home and he finished his LEGO car and took a nap. We then headed to a different part of the Treasure Valley for the CT scan of his chest, pelvis and abdominal cavity at 4:30pm. This scan is to check to see if the bone cancer had metastasized to any other area of his body, and also required an IV of iodine and an oral solution. I went back with him to do the IV and warned the imaging tech that he likes to faint, so they laid him down and used an itty bitty butterfly needle. This one was easy peasy and I retreated to the waiting room to wait only for the tech come back about 20 min later and let me know that I needed to come back. I panicked and asked if he was ok and she assured me that everything was fine, BUT that she forgot to scan his chest and she had already taken out the IV. I went back while they restarted one in the other arm this time, which hurt a bit more. Eli may or may not have looked at me and said some choice words. 

We finished up and returned home to a gift of meals by one of our baseball families. We are surrounded by so much love and support. It's been a huge help to not feel alone. We moved here just over 5 years ago only knowing one other family that we moved here with and the outpouring of love and offers of help have made us feel less alone even though this is all so new and scary.