Three...

Kam ended up having only a couple minor blisters on his feet with his last round of (Methotrexate) chemotherapy. He returned to the cancer clinic on Thursday, and while he was close, he didn't quite make counts to proceed with his in-clinic Doxorubicin. They told him to enjoy his weekend and come back on Tuesday. Kam was thrilled because that meant he would get the week of his upcoming 20th birthday and Christmas off for a break, instead of being hospitalized on Christmas for more chemo! Silver linings. 

Yesterday, in clinic, Kam made counts and got his first of two infusions of his very last round of the Doxorubicin. He is currently receiving his second (last) infusion today. Kam has gotten through all of these rounds without any evidence of cardiac toxicity, which is huge! Cardiac side effects are common with this type of chemotherapy, and so far Kameron's EKG's and echocardiograms look identical to his pre-treatment studies. 

We are amazed at all Kameron has been through. He has largely maintained a strong "let's do this" demeanor throughout these past 9 months of treatment. His body has been through so much. But physically, aside from some minor high frequency hearing loss and temporary blisters-- you'd never even know it. 

After today, Kam has just 2 chemotherapy treatments left. These will be hospital stays which, he doesn't enjoy. We are hopeful that these will feel easier for us, as these are the last two chemotherapy regimens of his planned MAP treatment.

We plan to thoroughly enjoy Kameron's 20th birthday and Christmas with the family next week. We were surprised with a sweet and generous secret Santa gift this past weekend that warmed every single one of our hearts. Thank you, whoever you are. It meant a lot. ❤

Thank you to each one of you who has reached out to us, checked in on as, and genuinely asked how we are. It's kept our spirits up and the demeanor to keep on going. Merry Christmas to you and yours, friends. 

❤Love, The Maddux Family

Four.....

The blisters that Kam gets on his feet from his (Methotrexate) chemotherapy, worsened this past round and has caused him significant pain. He had trouble standing or walking. Fortunately, the nurses had a trick up their sleeves and brought in special bandages for his feet, that helped lessen some of his discomfort. Despite this very painful development for him, Kameron was able to make an early "jail break" from the hospital and came home at the 72 hour mark. We didn't expect it, as he has never made counts on time before. He enjoyed getting to sleep in his own bed and snuggle his cat, Petey. We are counting this one as a miracle! Thank you, God! 

Kameron ready to leave the minute he heard he made counts for discharge.
He teased the nurse "you have 7 minutes to get me out of here." 

Kam cuddling his cat Petey after his discharge from the hospital

After a whirlwind three days at home, he was back at the cancer clinic on Friday to see if he would make counts for his 4th to last round of chemotherapy. He made counts and was hospitalized yesterday. Kameron got his chemotherapy late last night. So far he is doing very well. He has no additional blisters yet, is in decent spirits, and he is eating better than he typically has his previous hospitalizations. The dietician commented how he has been doing a good job of keeping his weight stable over the past month or so, and has had no drastic weight loss! He will likely be in the hospital till Tuesday, as we await the medication to work its way out of his body to have him safely at home.

Kam had authentic Chinese food made for him and brought to him in the hospital.

Thanks a million, Jane! We love you!

After this hospitalization, Kam checks in with the cancer clinic late this coming week to see if he makes counts for his last round of in-clinic Doxorubicin. This medication is administered over a 3-4 hour period, over two days, and he gets to go home once they are done. As you can imagine, he prefers this form of chemotherapy because he gets to go home. Then he will have a 1 week break before the last 2 rounds of in-hospital chemotherapy begin, all of this is blood count dependent. 

Thank you for continuing to keep us in your thoughts and prayers. And for checking in on us from time to time. We ask for continued prayers that the remainder of the chemo kills EVERY SINGLE LAST micro-cell of osteosarcoma in Kameron's body. Once chemo is done, and scans have been completed, our next goal is to achieve NED (no evidence of disease). We ask you join us in praying for that. 

Between rounds of chemo I found two penny's. A good luck sort of thing for our family. 

Thanksgiving and More Chemo

Kameron went to the cancer clinic on Monday. His red blood cells and platelets were doing better and he was no longer experiencing symptoms of anemia, but his white blood cells remained critically low. Too low to proceed with his 5th to last round of chemotherapy. We were told to go home and enjoy Thanksgiving together. And to come back on Friday to see if Kam's cells would bounce back by then, but we were cautioned it probably would still be too low. 

We spent the early part of the week getting groceries and setting up for Christmas. Kirby got us a real Christmas tree and she and Jesse got it set up in the living room. The stockings were placed, and the cinnamon pine cones really helped jolly the house up a bit. 

We enjoyed being home together as a family to celebrate Thanksgiving. It was just us, but it was warm, yummy, and I was grateful to get to be together and not in the hospital. Jesse is an amazing cook and roasted a perfect turkey. He also made Kameron's Thankgiving favorite: stuffing. Jesse, Kirby and I spent most of the day in the kitchen while the boys played games, and watched the Macy's Thanksgiving Parade, the National Dog Show, and a new Christmas movie. 

On Friday, Kameron continued to gain weight (inching closer and closer to his pre-treatment weight). Kam says, "4 or 5 meals a day keeps the dietician away!" He has been doing a good job of snacking throughout the day to avoid more weight loss. We also learned at that visit that his white blood cells had bounced back to a safe level to (finally) proceed with chemotherapy! He was admitted to the hospital yesterday afternoon and had his 5th to last round of chemotherapy last night. After this current hospitalization, he has 4 more treatments left.

Many have asked us, after that... then what? Kameron will then undergo numerous scans: a MRI of the leg that had the tumor, a bone scan or PET scan, and a CT of his chest to look for any more tumors. He will also be closely monitored by his oncology team. Once he is doing well and there is no evidence of active spread of his cancer, then he will be seen every 3 months for at least a year. Then every 6 months the next year after that. It will take his body 6 months to recover from the chemotherapy and for his immune system to be normal-ish. 

I say "normal-ish" because there are some long lasting effects from treatment Kam will always have. Such as, a degree of irreversible hearing loss. His cancer is a super aggressive type, and he will need to be monitored every year for any heart side effects or a resurgence of cancer for the rest of his life.

Please continue to keep us in thought and prayer. We've admittedly been, at times, discouraged. Thank you to those of you who reach out and check on us. It means a lot. We know Kam and our family are not battling this alone. 

Five Treatments Left

Kameron handled the chemotherapy in clinic like a champ! We saw little change in his energy level and he never got sick once! More importantly, he was able to continue eating well and has even put back on some of the weight he had lost. After his last chemo treatment a couple weeks ago, I took him out to Red Pavilion, his favorite Chinese restaurant here in the Treasure Valley. I told him "mom's paying" and he ordered 3 things off the menu. I was happy to pay! It is so good to see him have an appetite and eating heartily. 

Last week Kameron enjoyed his expected week break from treatment and all was well at his weekly check-up. Our two youngest sons were able to get their COVID vaccines last Saturday and it was a HUGE relief for our family. As they say in the cancer world, "if you want to protect the castle (Kam) you fortify and take care of the moat" (his family, those closest to him that could and would most likely get him ill). Unfortunately, Noah, Kam's youngest brother, started coming down with cold symptoms the next day. We immediately quarantined Noah and Kameron away from one another, and as Jesse and I are used to saying by now, "we divide and conquer." Thankfully, Noah was NEGATIVE for COVID, but we still have to keep them quarantined from one another none-the-less to protect Kam. 

This week we anticipated a hospital admission for Kam's next round of chemotherapy. Unfortunately, he did not make counts for admission and was quite anemic (critically low) on red blood cells. Furthermore, he was showing mild symptoms of anemia: fast heart rate when getting up, headache, and mild lightheadedness. So yesterday he received a blood transfusion in clinic and was sent home. His platelets (which help with blood clotting) and white blood cells (which help fight infection) were also critically low. So he failed meeting admission criteria this week on multiple fronts.  His energy level and spirits remain good. For this we are grateful.  

We also celebrated Kameron's Gotcha Day on Tuesday, the same day as his brother Noah's birthday. It's hard to believe he became our son 6 years ago. It often feels like he has always been our son.  Kameron returns to the clinic on Monday to check in and see where he is at with his counts and if he meets admission requirements, at that point. This delay has extended Kam's anticipated end of treatment to sometime early January 2022. 

As we head into the holidays, we'd like to wish you and your family a Happy Thanksgiving. We are grateful for those in the tribe that continue to pray, send encouragement, and love on us in the various ways many of you have in this difficult season of life. We ask for continued prayer and encouragement as we get closer and closer to the finish line. Much love and blessings to you all. Thanks for battling with us. 

Kam begins Cycle 5 of Treatment for Osteosarcoma

Kameron did not make counts last week to start his 5th and final cycle of chemotherapy, so he had an unexpected week off. For those who've closely followed his story, this means he will not be done with treatment until after Christmas. This expected end date of treatment is constantly shifting, as the doctors say, we cannot make bone marrow make cells any faster then it's going to. Today, he made counts and starts with the in-clinic chemotherapy and he will come back in tomorrow for day #2. He was happy to hear he made counts this week. He is ready to finish treatment and be on the other side of this battle.

This cycle of chemotherapy is anticipated to be a total of 8 weeks long. He loses 1 of the 3 chemotherapy medications he has previously been given. And now there are only 2 one week breaks over this 8 week cycle. And 4 of those weeks will require a hospital admission. This means he is likely to be spending Thanksgiving and Christmas in the hospital. 

Kameron enjoyed his extra week off playing video games with his brothers, building some of his Monkey Kid Lego, trick or treating at the Oncology clinic, watching movies and TV, and we went to a local retro arcade as a family. Noah (the youngest brother) was beating Kameron at the game Street Fighter. Kam thought he was playing the computer. When he realized it was the youngest brother repeatedly defeating him, that lit a fire in him to overcome, that gave all of us a good laugh!

A lot of you've asked what you can do to help during this difficult season. One request I have is if you have leftover Halloween candy you want to get rid of, we can take it off your hands! The cancer clinic has recently been down to bubble gum in their candy supply. We brought in our leftover chocolate lovers bag from Halloween and it brought smiles to a lot of kids faces! Please message me or Jesse if you'd like to donate. Please donate fresh/recent/untampered candy only. These are sick kiddos with fragile immune systems. Another option is, please donate blood or platelets to your local blood bank. These donations help kids like Kameron (who has had 2 platelet infusions so far in his treatment).

Thank you for your continued prayers, encouragement, and genuine love and support that you've held for our family. We are getting closer and closer to the finish line. Today and tomorrow's infusions mean Kam has 5 treatments left after this week!

... 7........

Kam went to the cancer clinic on Friday for his weekly check-up and possible admission for his next round of chemotherapy. He made counts and was admitted to the hospital yesterday. Last night he got his 7th (to last) round of chemotherapy. This is the medicine that causes the blisters on his hands and feet. A very rare and unfortunate side effect. He has already experienced blisters to both feet the previous round of chemotherapy, that seem to be healing well. One of his cancer doctors told him "you know that's really weird, right?" I explained to Kam that was doctor code for "you've been super interesting and we plan to talk about you at our next conference with all our doctor nerd buddies."

He also had his monitoring chest CT his last hospital admission, which showed the 5 nodules in his lungs remain unchanged since his initial diagnosis in April. Furthermore, the oncology team and radiologist said the appearance of these nodules "don't look like cancer." All things considered, this was the best news we could get! The plan is to keep watching them for any changes.

So far, this hospital stay, he has remained quite "boring." Which, in the cancer world, is a very very good thing. It's never good news as the patient or family to be interesting or exciting to your medical providers. He underwent a screening echocardiogram (an ultrasound of his heart) yesterday to monitor for any heart side effects, known to be possible with one of his chemotherapy medications. This turned out normal and unchanged. For now, Kameron mostly rests. He occasionally asks for food or watches videos on his phone. We like boring. Boring means you get to go home, once your treatment is done, as anticipated. 

Today, we got some unexpected good news. One of the oncology doctors (Kam has a team of 4 doctors) rounded and notified us that his next chemotherapy cycle, some of the medication can be done in their office and he may not need to stay in the hospital next week! This was very wonderful and exciting news. No offense hospital, thanks for saving our man-cub and all, but we would LOVE to see you a lot less than we already have to! This means of his 6 chemotherapy treatments he has left--- only 4 more would require a hospital admission. 

Should Kam make counts for each of the 6 remaining chemotherapy treatments, he will likely be discharged on or around his birthday. Please keep this in your prayers. Kam has been brave and strong this entire battle. He has continued to desire to be done in time for his birthday and Christmas. We want this so badly for him and would welcome any and all prayers in this regard. Also, he has started to talk more about what he wants to do after this battle is over for him. Please also keep this in prayer. We know that whatever Kameron sets his mind to, he does. And he does it with excellence and strength. Thank you friends, for joining us in heart and prayer for our guy. It really means a lot to our entire family.  

Last Two Week Break, Misfortune, and Fortune Cookies

Kameron made counts and was admitted to the hospital again this morning for his next regimen of chemotherapy. Yes, he is hospitalized each time he gets chemo. No, it's (unfortunately) not possible for him to do this outpatient due to the type of chemotherapy his specific cancer requires. The good news is he has 8 treatments left for his osteosarcoma protocol. He has 7 left after this current hospitalization.

This regimen of chemo is the one that will, inevitably, cause sores to his hands and feet. This rare side effect is unfortunately, anticipated to worsen each combo (he gets 2 of these back to back) that he does. He is expected to have 6 of the 8 remaining rounds with this form of chemotherapy. The plan for now is to trudge ahead and continue with the protocol until Kameron cannot tolerate it anymore. If/when that happens, the plan then is to do half of the dose. These are what we call in medicine "a rock and a hard place" kinds of decisions.

Kameron enjoyed this last 2 week break from chemotherapy that he is expected to have. After his next two rounds, things will speed up for the last 6 treatments with only a couple 1 week breaks in-between. We remain hopeful and prayerful that his chemo treatments will be done in time for his birthday and Christmas.  He spent this break playing video games with friends and his brothers. He also got to spend time with his cat Petey. These two have really bonded over these past few weeks. He is the best cat dad.

Kameron & Petey

We got a good scare this past week when our youngest son quite suddenly spiked a fever and started coughing. Our youngest two sons are not yet eligible for the COVID vaccine, and it unexpectedly put me into an IMMEDIATE quarantine with our youngest. And it had Jesse holding down the fort with our other 3 sons. But regardless of what virus "it was" we have to immediately quarantine away from Kam due to his low white blood cell count. I took our youngest to a local urgent care and had him tested for COVID. Thankfully, his fever broke within 24 hours and his test was negative. We've had to continue quarantine for him to keep Kam away from ANY possible viral infection, as his immune system cannot handle it. 

Our dog Harley's social distanced visit while we awaited COVID test results 

Please continue to pray for Kam. And for his youngest brother, who is still recovering from a viral bug. For our family, as we've had to dive in, dig deep, and divide and conquer right before a really grueling set of back to back hospitalizations. Which, already keeps our family separated for multiple days at a time. For our friend, Kirby who has gone above and beyond to help our family out in a million different ways in this hard season (all of which will likely embarrass her if I tried to list them out here, so I'll refrain). She has been a gift to our family. She helps to keep all of us moving forward when we feel we want to give up. It's an incredible blessing to have friends that hold up your arms when you feel you can't endure much more. 

If you know Kam well, then you know he has a knack for knowing "good" things. Whether it be picking out the best cat at the rescue shelter, the best foods at a restaurant, music, you name it. He just knows good stuff! Tonight his fortune cookie with dinner couldn't have been ANY more accurate! So I'll leave you with this....

Start of Cycle 4: Delay and Unexpected Blessings

Kameron did not make counts (not enough of certain blood cells) last week to resume with the projected chemotherapy plan for his osteosarcoma. It's hard to say whether we were happy or disappointed in this news. Both, maybe? It was a welcome break, as Kam has had a lot of setbacks, complications, and difficulties as of late. Instead of a hospital stay and another round of chemo, he got to spend last weekend playing video games for hours with his 3 little brothers. The giggling from the living room was a welcome sense of normalcy we haven't had in some time. We took walks with Kameron in a wheelchair, due to the painful sores he has on his feet, and got some light exercise and fresh air as a family. He also worked on one of his Lego cars with his dad. It did all our hearts some good to have that family time and for Kam to have some more time to recover from all he has been through. The downside is that any delay in treatment pushes Kameron's final chemotherapy date a week closer to his birthday. He has had his heart set on being done before his birthday (December 21st) and Christmas.

Kameron cuddling his cat Petey

Noah sporting a Childhood Cancer Awareness Ribbon

This past Friday, Kameron's blood cells made a miraculous comeback and he was able to resume his chemotherapy. He was admitted, but there was a slight delay getting him onto the hospital oncology floor. As some of you may know, our state (Idaho) is operating under Crisis Care measures due the the COVID-19 pandemic. We do not know what the cause of the delay in his admission was, but we do know that staffing everywhere is scarce/low. The amazing staff and providers at Kameron's oncology clinic were incredible. They started him on IV fluids (as step one of chemotherapy is adequate hydration to protect the kidneys) in clinic so he wouldn't ultimately have to stay in the hospital longer and his chemotherapy could begin on schedule. And they brought him a free Lego to work on to pass the time. Kameron was thrilled! This was made possible by a non-profit organization called Brody's Bricks. Our wait to be admitted to the hospital was much shorter than expected and we were quickly transported over to the hospital within the hour. 

As we awaited Kam to meet chemotherapy parameters, we decided to have a Lego build off. He building his new Lego, and me one I had brought that Kam had given to me as an unexpected gift. Four hours later, I (mom) was the victor by a mere 15 minutes! He'd swear to you the reason for his loss was that he stopped to be a gentleman and help me find a missing Lego piece. Always the kind hearted young man. 💕 

So long as Kameron stays nice and boring, he should be discharged from the hospital on Sunday. Then he gets a two week break from treatment, barring any unexpected complications. His nose bleeds have stopped. He has put back on some weight last week and used the break to eat well. And Kam has been so incredibly generous to all of us. As Kameron told me last week, "Mom, when you go through a really hard time that's when you realize who is really there for you. Who really loves you." Oh, sweet man cub, ain't that the truth!

Difficulties and Setbacks

It seems every positive step forward in treatment, soon accompanies two steps backwards in Kameron's fight with osteosarcoma. Last week, two hours after beginning his most recent round of chemotherapy, he suddenly felt horrible. We were bummed, as the week prior had unexpectedly gone so well for him. The doctors and nurses took every step to repeat what they'd done the week prior, with night and day responses. It was discouraging, to say the least. 

Kameron has since developed a rare side effect to one of his chemotherapy regimens which causes painful blisters on his hands and feet, known as Hand-Foot Syndrome. Every round being more serious and more painful then the one before. He has 3 more rounds of this combination before treatment completion. The decision was made to proceed as planned until the side effects become intolerable. If that happens, they would go down to half the dose to minimize the side effects. Tough and hard decisions when we know that this combo of chemo kills ~100% of his tumor cells. 

Kameron was discharged home Monday evening, once his side effects were at a manageable to stable levels, and his chemo levels were at a safe level to send him home. He has also developed numerous painful mouth sores which make eating difficult and painful. 

This week Kam had woken up with a bloody nose each day. Yesterday, his nose bleeds wouldn't stop with the usual bag of tricks we know to do. Kam had to go into the oncology clinic (it was so nice to bypass the ER given the current state of the COVID pandemic our area is in). They checked his blood. While he is certainly anemic and low on platelets, it wasn't low enough that oncology felt like it was likely contributing to his nose bleeds. The oncology (cancer) doctor consulted our ENT. He wanted him to get platelets, so he did. He also advised trying some easy things in their clinic. After an hour, they still weren't completely working, but things were better. We were going to be sent home to monitor Kam closely, when Kam began spitting up blood.  

The oncology doctor consulted our ENT again and it was decided he would come in to the ENT office and see his PA (a friend of mine). Kameron was absolutely exhausted. And I needed to get him to yet another doctor's office. We arrived at the ENT and he was given the option to pack his nose for 3-5 days or cauterize the bleed. Kam decided on cautery. It was painful and hard for him. But ultimately, he is happy with his decision because it worked and allowed him to go home breathing through his nose. This morning he woke up without a bloody nose for the first time in many days. 

Kameron was supposed to be seen today to consider admission for his next round of chemotherapy. Unfortunately, his levels yesterday were too low to meet criteria. We will check in again tomorrow to see if he has met criteria at that point. We also were informed that each time before he is hospitalized he will need to undergo a COVID swab 2 days prior. This is certainly complicated by his bloody noses. More hoops to jump through, when already faced with a seemingly unending set of hoops. 

Despite the many difficulties and challenges, there have been bright spots. One of our dearest friend's family has this saying that if you find coins on the ground that "grandpa is looking out for you." Kam found a penny on his seat in the oncology clinic before everything went sideways. I found one at the carwash the other day. It felt like a hug from heaven. 

We've had Chinese friends continue to bring beautiful homemade Chinese food and dumplings to help encourage and entice Kam to eat when he feels so miserable. Yesterday, we had learned about Hayley Arceneaux, one of the Space X Inspire4 astronauts that launched yesterday. A physician assistant and osteosarcoma survivor. There is a new hero in this house. And its been fun to watch the Netflix special and watch the launch last evening. Today, we have a dance party playing 90's Rock Anthems on Spotify.  

Continue keeping Kameron in your prayers. He is halfway through his treatment, and we know it will get worse before it gets better. As we navigate additional hoops and challenges that never cease to arise in this journey. Pray as we also parent 3 rambunctious younger brothers with their own needs and challenges. Thanks for holding us up in prayer, good thoughts, and well wishes. We appreciate and love our tribe. 

Past the Halfway Point of Treatment

Kam completed week #14 of chemotherapy last week and was discharged home on Monday. This was the halfway mark of his overall (total) treatment plan for his osteosarcoma. 14 weeks down. 14 more left to go.

This chemotherapy went significantly better for him than any round has ever gone! The doctors believe he has been dehydrated and such, and that was making him even more sick. It's really hard to drink when everything tastes weird because of the chemo medicine. 

They were diligent to get him really well hydrated before his chemotherapy, and wouldn't you know it, he barely needed any medications to manage his nausea! He was more awake, eating better, and cracking more jokes with the nurses and staff. It was absolutely amazing and a complete 180 for him. 

When Kameron got home, a friend had sent him a cool car Lego, and he was so thrilled. "It's a GTR, mom! A GTR!!" He resolved to complete it before his next round of chemo 3 days later. And this guy, he always meets his goals..... 

Today, Kam was seen in the oncology clinic and made counts. He was admitted to the hospital this afternoon to begin week #15 of chemotherapy. Please keep him in prayer as he has developed some mouth sores which make eating painful for him. Otherwise, the other side effects he was managing last week have thankfully gotten a lot better for him.

This past weekend we took the boys and Harley to Julia Davis Park in Boise. I'm not sure how I didn't know this before, but there is an area there all about cancer. We didn't expect to feel so encouraged and seen during our walk. An unexpected blessing and encouragement for all of us. 

The Hospital Yo-Yo

Last week, Kameron suddenly started not feeling well and having chills. We watched him like a hawk and started measuring for a fever.

Last Friday early morning, he woke us up with sudden severe eye pain. We were able to get him calm enough to inspect his eye and saw that his corner eyelashes had curled inward and were scratching his eye. I was able to remove the problematic eyelashes, and while it was better, his eye pain somewhat persisted. He was able to see his eye doctor later that morning who confirmed he had scratched his cornea and gave him an antibiotic ointment. Between his scheduled physical therapy for his knee and an unexpected eye doctor appointment, he was pretty wiped out after that. Not to mention his low white blood cell count and platelets not helping his low energy. So he took a long nap after he got home. 

He woke up later that evening with 101.5 F temperature. We immediately called the on-call doctor who advised we take him to the ER for admission and an infection work-up. When he arrived at the ER his temperature shot up to 102.8 F and he was lightheaded with a low blood pressure of 87/63. They quickly whisked him back to an ER room for an immediate work-up and fluids. After a negative COVID test and chest xray, he was placed on IV antibiotics with labwork pending, and at 2 am on Saturday morning Kameron was admitted to the cancer floor. 

We still have no idea what caused it, but the moment he got the antibiotics his fever was gone, his blood pressure went back to normal, and his funny sassy humor was back. He has been having fun teasing and cracking jokes with the nurses. We also watched Good Burger to pass the time, one of his favorite movies that he frequently quotes.

The blood cultures were all negative (hallelujah.. the last thing he needs is a port infection!) He has had some medication side effects that have been super tough to manage and he has lost about 10 lbs. He remained in the hospital until home health for IV antibiotics could be arranged and his team of doctors could all round on him. Jesse has stepped up and learned how to give his IV antibiotics himself and was given two thumbs up by the nurses for his excellent skills. 

Kam got to be home for a couple days. During that time, the hair he was growing back fell out again. Kameron let Jesse shave most of his head to avoid having loose hair in his pillow and bedding. 

He was seen in the oncology clinic yesterday. He miraculously made counts and was admitted to the hospital yesterday for his next round (week #14 of 28) of chemotherapy. The next few weeks are grueling back to back treatments. Over the next 17 days he is likely to be in the hospital at least 12 of those days.

Please keep Kam in your prayers. He is experiencing some unpleasant side effects from his various medications, is losing weight, and he really hates being in the hospital. Please pray for our family as we have had some unexpected transitions lately and that has been additionally hard. 

The In-between

Kam has bounced back, slowly but surely each day, since resuming his chemotherapy. His weight has miraculously maintained to improved since his last hospitalization, despite him having quite a few rough (not feeling well nor up to) eating days. We have absolutely zero explanation for this, but know God's looking out for Kam! His hair that has grown back in, has miraculously hung on longer than the last round of chemotherapy too. 

He is making good progress with his knee surgery recovery, and in physical therapy as well. He likes his physical therapist therapist and PT aide, and they both like to tease one another and talk about cool cars. 

Kameron had a recent bone scan which came back inconclusive. The doctor recommended x-rays to rule out evidence of metastatic (spread cancer) lesions and thankfully those came back as ok. 

This week we learned Kameron's blood counts are very low and, in particular, his platelets (these help with clotting/stopping bleeding), are very low. Normal is 150,000 or more. His were 11,000. We had to stop his Aspirin to prevent blood clots and are watching him for any signs of uncontrollable bleeding. He has already underwent a platelet transfusion once, which improved his numbers only slightly to 14,000. He will see the clinic again on Monday and he may need a transfusion then. Until then we are watching him incredibly close for any problems.

I got to have lunch date unexpectedly with Jesse and Kam this past week, after Kameron had physical therapy. His physical therapists office is located across the hall from where I work as a PA. Kam had Jesse text me an invite and you better believe I jumped on the chance to have Panera with some of my best men!

This morning Kam woke up with a foreign body sensation in one of his eyes. I found a cluster of eyelashes that had turned inward and were poking him and removed them. It felt some better, but is still bothering him a significant amount. He is seeing his eye doctor later today for a thorough check. 

Kameron has spent his past 2 off weeks playing video games, watching funny or cute cat videos, and building more Lego cars. He has been doing a great job on them and intends to have a whole fleet when he is done!

Please pray for Kameron's counts to improve. He is tentatively scheduled this coming Thursday for his next round of chemo, but that cannot happen if his platelets are below 50,000. Delays in treatment push back his finish date, and he is very hopeful he can be done by his birthday and Christmas. Please pray for his eye pain to get better soon; and that the sores on his tongue he developed from the chemo, continue to heal and resolve. 

Thank you, friends. ❤ 

First Round of Post Surgery Chemotherapy

This past Tuesday, Kameron was re-admitted to the hospital to begin his 18 weeks of post-surgery chemotherapy for his osteosarcoma. He has since ben discharged back home. He is making excellent progress with physical therapy with his right knee range of motion, and his pain has remained minimal! He takes his Celebrex only for his pain. He has picked up an interest in really cool cars (ex: McClellan, Bugatti, Ferrari, Porsche). He bought himself his dream car Bugatti Lego. And as a celebration of his recent amazing pathology report results-- we got him a Porsche Lego which he finished putting together before his most recent hospitalization.

This round of chemotherapy has been more difficult and harder on his body. He has been sicker. We believe one of the medications that had helped minimize this for him, was helping him far more than we had realized. Unfortunately, this is the same medication that led to his fall and low blood pressure while previously in the hospital. Side effects have been a hard and mucky part of this journey to navigate.  

Because Kameron has been sicker, it's harder to inspire and encourage him to eat and drink. Basically, our mantra has been "what doesn't sound horrible?" During chemo treatments, we've all had to shift our frame of mind from what sounds good, to what sounds like you might be able to keep it down? Sometimes the answer is mom's special snacks (the one's I usually would share with NO ONE). Sometimes it's ice cream on a giant brownie from Stella's. Basically, so long as he is eating, it doesn't matter. He is eating.

We did receive some good news from the hospital's social worker that Kameron has tentatively been approved for disability. What this exactly means for him, we don't know yet. We do know that we have additional paperwork to complete and that we will have more financial assistance with Kameron's medical bills. Which is a HUGE blessing!

Kameron gets to have a couple week break from treatment and then resumes an intense 3 weeks of back to back weekly chemotherapy treatments and hospitalizations before his next break.   

Please continue to pray for our family as we've been hit hard with even more stressors lately. School is starting soon for our younger three in the coming week or so (and they're all super excited). Navigating last minute back to school shopping items that come up, various doctor's appointments for all the kiddos, and a grueling chemotherapy regimen for Kam while mom also works full time-- is no joke. Let alone the ability to make time for self care in this season. (We are doing our best).

Thank you to our tribe. Those who continue to hold us up in prayer/love/thought, through words of affirmation, encouragement and in acts of service. We thank God daily for you. We often get told "we have no idea how you're doing this." It's Jesus. And it's God showing up through our people like you. Holding our arms up when we just cannot do it anymore. It's showing up in your various acts of love and support. You're proof that it takes a village. And we are so very grateful for our tribe. 💖💖💖

The Pathology Report

This week Kameron got a break from visiting the oncology clinic, as his chemotherapy treatments are on hold until he's cleared by his orthopedic surgeon. As much as we adore his oncologists, it was nice to have less doctor visits for a change. He saw the surgeon on Tuesday.  Kam had the dressings all removed from his leg (sweet, sweet freedom!!) and steri-strips put in their place. He was also given a bit of freedom to take the brace off when he is sedentary or laying down, and he is allowed to put a bit more weight on his leg now. X-rays were taken and show his knee replacement is looking absolutely perfect! The incision is healing well and he is doing better each week. His surgeon cleared him to begin his post-operative course of chemotherapy as soon as early next week. His doctor also ordered physical therapy to work on knee bending, which he started this morning. He learned today how to get up and downstairs safely so he can finally sleep in his own bed! He has stretches to do at home to keep him busy.

His chemotherapy (and hospitalizations) will start again on Tuesday (8/10/21). It will be 18 weeks in total on the post-operative end of his treatment plan. The first 10 weeks look identical to the previous pre-operative 10 weeks of chemotherapy, and the last 8 weeks are closer together and we lose one of his 3 chemotherapy medications at that point. If all goes well and as planned, he will be done just prior to his birthday and Christmas. 

Today, Kameron's surgeon called us with news of the pathology report. He had negative margins (meaning: they see no tumor cells outside of the big tumor they knew laid inside his femur) and that nearly all of those tumor cells were D-E-A-D! This means Kam's chemotherapy is WORKING and his cancer is responding very well to the chemotherapy medications they are giving him. This was literally the BEST news we could have received and means excellent things for his prognosis!

Please continue to pray for our fighter. And our family as we support his fight. We are about to enter round #3.  We fight on. 

The Tumors Out. Now what?

Kam has continued to do really well after his surgery to remove the tumor. His pain has been controlled the entire time with simple Tylenol and prescription anti-inflammatories. He has needed no pain medications otherwise! He is doing more and more each day and has nearly put all of his pre-chemotherapy weight back on. He has been sassy, eating better, and is mischievous as ever! It's so nice seeing him feeling better.

He meets with his surgeon again early next week. They'll remove the dressing, that acts as a wound vac, to keep the wound clean and closed. His surgeon has really gone above and beyond to ensure Kameron has a good outcome and to minimize his risk of any potential complications. We could not be more grateful for his expertise, attention to detail, and his willingness to go above and beyond for our boy! Each day Kameron is able to walk a bit more with his walker. He still cannot bend his knee yet, is in a straight leg splint, and he isn't to put more than just slight weight on his surgical leg. 

We met with Kameron's oncologist yesterday. His case was discussed at tumor board and they all felt that his small 5 lung nodules were of low likelihood to be osteosarcoma. They also confirmed they (the nodules) are indeed there, that they are stable since April, and they are something to be watched closely for any changes given Kameron's type of cancer. The thoracic surgeons recommended not to "go after them" as it is likely difficult to reach (at best), and the plan is for regular chest CT's to monitor for any changes.

We also discussed his post-operative chemotherapy plan. He is likely to re-start chemo late the second week of August. He has 18 more weeks of chemotherapy ahead of him. The first 10 weeks look identical to the previous 10 weeks. Then the last 8 weeks of treatment he loses one of the chemotherapy medications, but he only gets one week breaks (twice) the entire time (more grueling, less recoup time). Until-- the finish line. 

All of this is pending his surgeon's approval to proceed with treatment, Kameron making counts to proceed with chemotherapy treatments, and that Kam stays without complications. If all goes as planned, he would be done after the first week of December with treatment.

We ask for good thoughts and prayers for continued and uneventful healing of Kameron's leg. For his social security disability request to go through. And for us helping Kam fight this fight. This has been a long grueling fight. We battle on. 

Kameron's Surgery

Kameron's surgery yesterday went well and he had no complications! We are thanking God for such excellent news!

Yesterday morning we got ourselves up and ready for the big day. Kam did his pre-surgery shower with antibacterial soap, got dressed, and he seemed to have an extra pep in his step. On the way to the hospital, he played his music to get himself pumped and ready. Mom usually does not allow commandering of her radio.. but this was a special day. And we needed hype music. 

We started at the oncology clinic so their nurses could access his port and draw labs. Then we checked in for his surgery. When they went to call Kam back.. things started to go a bit awry. It started with the CNA initially not wanting to let me go back with him due to COVID hospital protocols and "ma'am he isn't a minor." I explained "yes, and he has osteosarcoma." We'd also obtained approval from his surgeon prior. The CNA said he'd have to speak to the nurse. Kam did some advocacy of his own, because I waited no more than 10 seconds and then Kam was calling me to go back with him.

Then they wanted to put an IV in his arm. Cancer kids (and their family) with ports are told to not allow peripheral (away from the port) access due to chemotherapy increasing their potential infection risk, it makes their veins easy to tear/break, and frankly it's traumatic for them. We had to advocate they triple check that was what they really wanted before consenting to proceeding. After consulting with the anesthesiologist, we were told the port was too slow to push rapid fluids or blood, if it was needed in the OR. So while it made sense, it left us confused. Then why did they insist the port be accessed beforehand? Accessing the port alone is an infection risk. These kinds of questions are tough to navigate in the midst of the usual pre-surgery anxiety. 

As you can imagine, tensions were really high at that point. Kameron's anesthesiologist returned and asked Kam "are you from Boise?" He proudly said, "No. I'm from China!" The doctor asked, "Which part?" I explained he originally is from the Sichuan Province. Then the doctor unexpectedly started speaking fluent and perfect Mandarin to him! It helped calm both of us down. This also helped build trust with Kameron as he performed a local block in his right leg for anesthesia. It's cool to see God show up in people.

After that, everything else went smoothly. Kameron's surgery took as long as they estimated. His surgeon was very happy with how it all went. He lost very little blood and did not require a blood transfusion. They removed the prior biopsy tract and took wide margins of his distal (lower) femur. The hope was to see no tumor when he removed the bone in which it was encased and thankfully what the doctor saw looked like healthy bone on the outside (this is what he was hoping for because it signals the tumor was able to be removed without exposing it inside Kam's body). That specimen was sent to the pathologist and it will take ~1-2 weeks to get results back.

We are continuing to pray for negative margins and a high necrosis rate on the pathology report. All mean improved odds and a better prognosis for Kam.

After surgery, I was allowed to be with Kameron in the PACU. He had requested that specifically and they honored his request. He has had very little pain. The block in his leg has continued to help him and he has needed no pain medications thus far. 

After they got him to his hospital room, he was cocooned over in a transfer blanket by a small crane above his bed. He threw up a couple times last night from the anesthesia and surgical pain meds. But other than that, which all was expected, he is doing awesome. He is sleeping a lot and already meeting some of his discharge goals. 

Kam is in good spirits. Just sleepy. Today he will work on walking safely (multiple times) with physical therapy. He is in a straight leg splint for healing and is allowed to put only slight weight on his leg (not full weight yet). He also will work on eating and drinking-- which he ate some Chick-fil-A this morning and handled that like a champ! The doctor anticipates he will likely come home tomorrow.

In addition to prayers for the outcome of the pathology report we are also asking for specific prayers for the incision to heal well, for no infection to develop, no blood clots to form, and for Kam's pain and nausea to be well managed. Thank you to the tribe (that's you all) for all you've done to help our family get to this point. Much love and gratitude to you all. ❤❤❤

Let's Bring Y'all Up to Speed

It has been 3 weeks out of the hospital with a pause on chemotherapy while Kameron awaits his tumor removal surgery. Kam has used this opportunity to work on eating ALL the snacks and milkshakes and putting some weight back on. He also spends a lot of his free time finding really funny cat videos. Chemo has been hard on him and makes him super sick. The first week he was off, he ended up with a pretty intense superficial skin infection in his feet and that nearly landed him back in the hospital. Fortunately, we were able to manage with at home wound care and oral antibiotics 4x a day. His infection has thankfully since resolved. 

Kam petting our dog Harley

Kam has since had a whirlwind of pre-op appointments, labs and tests while we have been waiting for his surgery. He needed new (up-to-date) scans of his lungs and of the tumor in his leg. The good news is the tumor in his leg has shrunk! According to Kameron's orthopedic oncology surgeon this is an excellent prognosis for him, as it confirms his tumor is responding to the chemotherapy medications! Some tumors are resistant and do not respond to chemotherapy. It was reassuring to learn he wasn't having to go through all this hard treatment for nothing.

The bad news was we learned Kameron has lung nodules. The number one place that osteosarcoma likes to spread is the lungs. Obviously we had a lot of questions, as the radiologist noted he had "3 to 5" unchanged lung nodules. His scans in April had been read as normal, so this was certainly news to us. After Kameron's oncologist spoke to a third radiologist (who had not read his previous images) we learned that an adult radiologist had read his initial scan. Having a few tiny nodules on an adult scan is within the range of normal. However, a pediatric oncology radiologist would look at these tiny nodules and note them as they may or may not be concerning for metastases (spread). Kameron falls right in the middle of whether or not to be concerned (based on his age, cancer type, and demographics). The oncologist will be reviewing his case further with the tumor board, and we are waiting to hear if they will recommend any more things to do then repeat scans in a few months to monitor them. Kameron's oncologist feels these tiny nodule are likely too small to remove or even biopsy. They are favored to be non-cancerous given their appearance. However, that isn't completely reassuring for us, as we were initially told Kameron's tumor probably wasn't osteosarcoma as it didn't look like it either. The positive part is that these nodules, whatever they are, haven't changed.

Meanwhile, Toby and Noah (Kameron's youngest two little brothers) were able to attend sibling camp at Camp Rainbow Gold this week. Sibling camp is for the siblings of local kiddos with cancer. Toby is currently there. Noah came home on Wednesday after an amazing 4 days and had the time of his life! He is begging to go back next year. I keep learning, every time he talks to me about it, of all the amazing things he got to do over those 4 days. I am not sure how those wonderful people can pack so much amazing into 4 mere days! We have been so grateful for this opportunity. 

Toby and Noah at Hidden Paradise Ranch. Home of Camp Rainbow Gold.

Kameron's surgery is scheduled this next week in Boise, Idaho at St Luke's Hospital on Monday, July 19th 2021. We check in to the hospital at 10:30 am. He will start at the cancer clinic to get his port accessed and then he will go through pre-op. The surgeon plans to resect the tumor and replace it with metal and cadaver bone. Ultimately his surgery will appear similar to a knee replacement, but we are told he will keep his patella (knee cap) bone. The surgeon says we are praying for a good necrosis rate (this means cancer cells that died from chemotherapy) and negative margins (meaning they get every last salt sprinkle of the cancer cells in the leg). He will likely be in the hospital a couple nights. He estimates that he will hold chemotherapy 3 more weeks, before Kam starts post-surgery chemotherapy again.

We are all ready to get rid of this tumor! Please join us in prayer for all of these things. Pray that Kameron's pre-surgery COVID test on Saturday is negative. Pray that Toby has a great time at the remainder of his camp. Pray for Kameron's upcoming surgery: a high necrosis rate and negative surgical margins. Pray for his surgeon and surgical team-- for steady hands, no complications, and for no infection to occur. Pray for those lung nodules to be nothing and for momma to stop feeling worried about them. Pray for our family as all of this has been hard. God is good and we are trusting Kam to him. 

 

Kameron Graduates From High School!

On Tuesday May 25th, Kameron officially graduated from Skyview High School! We have grieved the end of his high school career not looking like anything we had ever imagined or expected. His school has been wonderful and understanding. They made this part of the process as painless as possible on him. He missed Prom, his Graduation Parade, finals, grad night, etc due to his cancer treatments. We had a direct point of contact at the school who kept us in the loop with expectations of graduation since Kam would be missing a lot of the critical information. They made sure he walked towards the beginning of graduation so he'd be able to participate, despite it putting them out of alphabetical order. They've been amazing to our whole family. We will miss Skyview and its wonderful teachers and staff fiercely. They've loved us well and been compassionate when we needed them to show up. His teachers have checked on him occasionally. And they continue to let us know how very much they care for Kameron. 

When Kameron was adopted 5 1/2 years ago, we went to a fancy jade jeweler in Kunming City, China and bought him a piece of jade. We were told there that this was a Chinese tradition (at least, in the province of Yunnan) that parents give their child a piece of jade when they graduated high school or college, got married, etc. It marks a monumental occasion. So just before Kameron's graduation, he received that piece of jade we'd bought for him. It was a special moment. 

Kameron had a big showing of his tribe at graduation. Many members of mom's family, Jesse's mother, and friends showed up in big numbers. He had people in various states following graduation virtually and cheering him on from afar. He was happier than I've seen him in months! He'd made it. There were tense moments leading up to it with difficult to control nose bleeds, chest pain (don't worry-- he was worked up and all is well), and moments of not feeling well that had us questioning if this would even be a reality for him. What we know about Kam is, he has tremendous amounts of grit. Of course he made it. 

Kameron graduated with honors and a GPA > 3.5. He has worked so hard overcoming a language barrier, learning a whole new language and culture, while maintaining his fluent Mandarin. We couldn't be prouder of him.