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.