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.