Week #8 and #9 Treatment Updates

Kameron got really ill last week. His throat suddenly started bothering him, his ears hurt, and his temp started going up to 100.0 F. He was miserable and quite ill. We saw his oncologist and they felt he had a pretty miserable throat infection. He was on hospital watch. Any worsening at all, and we'd have to go into the hospital for inpatient treatment. Kameron hates the hospital.

We decided to put him on magic mouth wash with an anti-yeast medication and an antibiotic. His pain got so bad he needed pain medication (if you know Kam well, he hates medicine and prefers to take the fewest medications possible). The first set of pain meds made him puke and he was not able to eat much and keep it down. It was a pretty tense ~24-48 hrs, but he finally got better after that! He was eating, playing with his brothers, asking to play family board games and go for walks. 

Today, Kameron was re-admitted to the hospital for week #9 of chemotherapy after "making counts." His throat infection has largely cleared and he no longer has pain or difficulty with swallowing. He will likely be in the hospital for 4-5 days and then will be home briefly for a few days; before another round of chemo next week.  It's a bit like Groundhogs Day.  Thankfully, this round he gets the biggest room on the ward. I joked with Kam that I could do cartwheels in here.

Once he is done with the next 2 rounds of chemo, we wait for Kam's blood counts to recover, and then he has surgery to remove this beast of a tumor. His surgery will happen in July.

Kam is a warrior. He is fighting taste buds constantly changing due to chemotherapy side effects, and he has managed to find a way to push through the nausea, illness, vomiting 🤢 and put back on a bit of weight! This has been hard won for him. But we have found a regimen that's working for him. Hallelujah! 

Thank you for keeping us close to heart, sending positive vibes, and keeping us in prayer. For reaching out and checking on us. For the words of encouragement sent. We have been getting all of them. And it's so appreciated. 

While many fighting cancer struggle with feeling isolated, we feel supported. Loved. Encouraged. The tribe keeps showing up. Much love to you all. ❤❤❤❤❤❤

Kameron meeting the cousins new puppy this past weekend

Surgery Plans and Update

Kameron met with our local oncology orthopedist on Tuesday to discuss his upcoming surgery to remove the tumor in his leg. His surgery is tentatively scheduled on July 19th. He will need to undergo extensive preoperative testing, new imaging for surgical planning, etc. This will all need to happen before his scheduled surgery.

Then Kameron had an appointment with his oncologist on Wednesday. They gave him an antibiotic infusion to prevent pneumonia and rechecked his blood counts. His platelets (which help with clotting) are low and his white blood cells (which help fight infection) are also quite low.  And he is anemic. He may need a blood transfusion in the next week or so. All are expected side effects from his chemotherapy.

Kameron had this past week and this upcoming week off from his chemotherapy regimen. He should undergo two more infusions of methotrexate the following week and the week after that, should his counts permit moving forward with treatment. There is always the possibility Kameron won't be stable enough for chemotherapy.

We've been able to get Kameron to eat enough to maintain his weight. But it's been hard to have an appetite with such an aggressive chemo regimen. In addition, he has had mouth sores. But thankfully those are improving. 

Kam has been struggling a lot with a recurrent bloody nose. Yesterday he had one so intense that was not responding to our home measures, and after a call to his doctor, he had to go to the ER. His platelets, white and red blood cells continue to lower (but not severe yet). They packed his nose and infused it with a gel to prevent further bleeding. It finally has stopped. We are hopeful this may stop his daily nose bleeds.

We will see his oncologist again on Wednesday. Please pray for our warrior's appetite. Weight maintenance (and gain) is imperative for his battle. Pray his nose bleeds stay away, as it's been a daily struggle and is probably worsening his already miserable nausea. That his counts stay up and we won't have a delay for his treatments. Delay in treatments can mean delay in surgery. Continue to hold our family in prayer. For Jesse and I to maintain energy levels and our ability to encourage. 

Thanks for being our tribe. ❤

Huntsman Cancer Institute: University of Utah Update

We had Kameron's Telehealth appointment(s) with the Huntsman Cancer Institute at the University of Utah on Monday for second opinions from their sarcoma team. We met with their oncologist and oncology orthopedic surgeon. The doctors agreed with the diagnosis for Kameron's tumor, the treatment plan, and that the recommended surgical plan here is exactly what they would do if we were to go to Salt Lake City, Utah. Their outcomes, like Boise, are on par with the national average for his type of cancer. We also learned that there are no current medical studies for osteosarcoma that are looking promising (ie: better than the current protocols and standard of treatment) that they'd recommend to Kameron. It was reassuring that we are doing all the right things, but also kind of a blow. It left us feeling like the wind had been let out of our sails a bit. 

We were really hopeful that there was a way Kameron could avoid, what is essentially, a fancy (ie: more extensive) knee replacement. The surgeon there took his time with us and showed us Kam's MRI in detail. There is a less than 4 cm tumor in his right knee, but a lot of surrounding white signal that the surgeon said, "I'd bet my money on, is salt sprinkles of cancer cells!" Those extend into the knee joint itself. In an effort to get ALL the cancer cells and take wide margins, there is (unfortunately) no other way to remove the tumor. Kameron's surgery is anticipated to occur at the end of June/beginning of July. He will meet with the local oncology orthopedist next week to discuss a more definitive surgical plan to remove the tumor. 

Kameron's MRI of his knee. The doctor is pointing to the "salt sprinkles" of cancer below the larger (globular) tumor.

Kameron made it to his high school graduation last night! There were some tense moments that made us concerned it may not happen for him, but he persisted. We will do a separate post on that at a later date when we have photos and more time to share and put words to such a monumental occasion for our guy. I haven't seen him that happy in weeks and that made my momma heart leap for joy! It was a very quick couple days for him at home after his discharge from his most recent hospitalization, family came to town to celebrate this accomplishment, and as of 8 am this morning we were headed back to the hospital and he has been re-admitted for week #6 of chemotherapy. 

Chemo has been hard on his body causing bruises, dry skin, mouth sores, severe nausea and a poor appetite. This is a hardship for a guy who is a self described foodie. Prior to cancer, Kameron could handle anything super spicy. He'd say "not spicy enough" as nothing we could find was ever too spicy for him. Since the chemotherapy, he cannot eat such spicy things. It's kind of like Superman losing the ability to fly. He has lost quite a bit of weight, so once he gets discharged home from the hospital, we need to prioritize staying on top of his nausea and him eating as much as he can tolerate. As Dr. Meeker (one of the team of oncologists Kam has) says, "there is a lot of data that says if you aren't well nourished, cancer cells have a way of coming back. And we don't want that." Kameron is more determined then ever to do what he can to beat this beast.  He has been planning his post-hospitalization menu in detail.

Please keep Kameron in prayer as this cycle of treatment has been particularly intense and grueling. Pray we can keep spirits up, weight up, and that Jesse and I can find moments to get the rest we need in this season. We are grateful to everyone who continues to check in with us, who have come alongside our journey in various ways, who send love & encouragement, and to our family for their recent visit. It has sustained us through some tough moments.  Much love to you all. 

The Whirlwind

Claiming these promises in this difficult season

Since learning of Kameron's "something's wrong in his knee" diagnosis back at the end of March, learning the next steps in the treatment process has been understandably overwhelming for us. In PA school we were told, "it's like a fire hydrant has burst open. Open your mouth and absorb what you can." Knowing full well, we would be missing some things. Probably, important things. Add stressed out brains and you're understanding and absorbing even less than usual. So we are taking the next steps as they come and learning as much as we can along the way.

As we are going along, we are picking up more and more. The cliff's notes version of Kam's treatment plan: Kameron will be getting 3 different kinds of chemotherapy (Cisplatin, Doxorubicin, and Methotrexate). He'll have 10 weeks (we are in week #5 currently) of chemotherapy. Around week 10, he has surgery to remove the tumor from his leg. Then after that, 18 more weeks of chemotherapy. 

We were able to schedule Telehealth visits with Huntsman Cancer Institute at University of Utah in Salt Lake City for Monday afternoon for a second opinion from their oncologist and surgeon. Getting in was much easier than our previous attempts, so thank you for those prayers. They worked! They have already sent Kameron's pathology specimens to their pathologist for a second opinion. We learned yesterday that they agree with the Mayo Clinic's interpretation: high-grade osteoblastic osteosarcoma. It's weird to feel grateful for consistency in a horrible diagnosis you don't want. It was also good to know Kameron isn't going through all this for nothing.  

We had a generous family friend have support bracelet's made for Kameron. We are handing these out as we are able to Kameron's friends, supporters, prayer warriors, and encouragers. Thank you to all of you in Kameron's tribe. We have people praying for him on EVERY continent but Antarctica. We have prayer warriors in Australia, Asia, Africa, Europe, North & South Americas!! We know our boy is well loved, seen, and supported. <3<3<3.

Kameron graduates on Tuesday, May 25th, 2021 @7pm (MT) at the Idaho Center. He is determined to be there. And he is doing everything within his power to get better, fight cancer, and make this happen. His doctor is supportive of allowing him to be there. Everything and anything the nurses or doctor ask of him, he does it. Even when he feels absolutely miserable doing it. We have known this about him for a long time, Kameron is a fighter!

For those of you who wish to be able to attend the graduation but are not local, here is a virtual link:

• The link to the graduation stream channel is https://www.twitch.tv/cpaudio.

• **Just before the event ends a link will be posted in the live chat to each video. CP Audio will create events on Twitch in the next day or so for each ceremony. Anyone who would like to be notified that the events are about to start just need to visit https://www.twitch.tv/cpaudio then click on the notifications bell. **

Kameron's Graduation Announcement

Kameron Treatment Update

We were disappointed to learn, after many weeks of effort, that the University of Texas MD Anderson will NOT be seeing Kameron for a second opinion for his osteosarcoma. Long story short, after lots of calls back and forth to the insurance company, (MD Anderson) Houston, and our doctors offices-- we found out our insurance will not approve us for in-network benefits. Their reasoning was that Kameron can be seen at a more local (in-network) cancer center-- Huntsman Cancer Center in Salt Lake City, Utah. To say I am frustrated about this development, is putting it mildly. After hours of our own research, MD Anderson is nationally ranked #1 in treatment for osteosarcoma with the best rates of a cure. This has been a tough blow for us to accept. 

We are now pursuing a second opinion in Utah. We are tired. And we are having to start over in the referral process with a new hospital. Please be in prayer that this can be facilitated quickly.

As far as we understand right now, Kameron will undergo additional rounds of chemotherapy each week for the next 2-3 weeks. He'll be hospitalized for 3-4 days at a time (each week) as the oncology team administers a 3rd kind of chemotherapy medication. Kameron graduates from high school later this month. We are excited for him and his accomplishments, and also nervous as COVID restrictions relax around us, because selfishly those protect Kameron from potential exposure to possible infections (ie: colds, etc).  He'll be at the height of his treatment and most at risk when he walks for graduation.  

Kameron's hair is falling out. His white blood cells that help fight infections are at a critical low, due to the chemotherapy. That means he can catch infections much more easily than usual. And any slight fever will send him to the ER. However, his spirits remain good and his resolve to kick cancer's butt remains unwavering. He has the same sharp wit and good humor. 

Thank you to those who've mailed us notes of encouragement, ding-dong ditched donuts at the door, taken the younger boys to play with friends or assisted with childcare, sent money for Kam snacks, brought him Chinese food, etc. It has meant a lot to us. It has taken a village. <3<3<3

Kameron's First Week of Treatment

After 3 days in the hospital, Kameron is home! As you can probably imagine, after undergoing his first round of chemotherapy, he has been quite tired and feeling under the weather. It has been a whirlwind couple weeks since receiving his osteosarcoma diagnosis. We are sorting out our new normal and what Kameron's treatment/appointments/expectations will look like over the next months.

This week (Tuesday) we met again with the local oncology orthopedist. At the 10 week mark, Kameron will need to undergo surgery to remove the tumor in his right femur. The doctor explained what his surgical plan would be for removal. It would require an oncological resection of the tumor with wide margins, utilizing cadaver bone, and instrumentation that would look like a fancier (more entailed) knee replacement. However, surgery is more risky for Kameron because of his chemotherapy, which makes him immunocompromised (ie: susceptible to infections). Infection is a big concern. As well as blood clots.

We also checked in this week with his oncologist (cancer doctor). Kameron has always had intermittent bloody noses, but the chemotherapy has made that worse for him. They helped us navigate plans to manage those at home and prevent them. They have been wonderful about navigating social programs and secondary insurances that will help cover Kameron's extensive medical needs. Their program made this complex process easier to understand and navigate in a clear, step-by-step process. It was so wonderful to see a system work so well for its patients! 

We are doing what we can to support Kameron as he fights osteosarcoma. He has had to go on a low-microbial diet. Which means, no sushi. That was a bummer. Basically, it's super important we keep hot foods hot and cold foods cold, and wash the heck out of anything fresh he eats. We also got him a gamer's laptop that he'll be able to take with him to his treatments (which we learned will require an inpatient hospitalization every time he has a chemotherapy treatment). The treatments really affect his appetite, so we have been diligent to make him or get him whatever he is feeling up to eating. Somedays, it's mint chocolate chip ice cream for dinner! He has been loved on by friends and had snacks, blankets, Chinese food, and activities brought to him to fight boredom. He was able to video chat with dad during his hospitalization and go "virtual shopping" for snacks at the Asian Market, which he seemed to enjoy.

We would appreciate continued prayers as we continue to navigate getting a prior authorization/approval from our insurance company to go to University of Texas MD Anderson in Houston, Texas. Our doctor wrote a letter for us on Tuesday asking them to expedite our request to be seen out-of-network, as their sarcoma program has better than the national average odds for Kameron's specific kind of cancer. We are wanting the best/most promising treatments possible for him. We are currently in a waiting pattern for approval, and this can take 72 hours. We are hoping for answers on this soon. 

Kameron has another off week of chemotherapy treatments, this coming week. He will see his oncologist again next week and he'll have more lab work to closely watch how his body is handling treatments. His type of chemotherapy requires three different medications. These can cause damage to his heart, kidneys, hearing and peripheral nerves-- which is why they watch him so closely in the hospital. 

Because Kameron is so susceptible to infections with his treatments, we are limiting our outings and exposure to others. We ask if you are sick, you respectfully keep your distance, to keep Kam safe.

Thank you to those of you who have reached out. For those continuing to hold up our family in prayer. We know Kameron isn't battling this alone. And many of you have come alongside our family and supported each of us, loved on each one of us, and helped carry and encourage us when the load gets heavy.  Thank you doesn't seem like enough, but right now, it's what we have. 

Kameron Update: A New Challenge

For those of you who have been following our journey, and for those who are newly joining us, we recently announced a devastating medical diagnosis we received for Kameron. As you can tell, it has been quite some time since we last posted here on our adoption blog. Kameron has been doing great. He is an incredible son. So funny. He literally has all of us constantly cracking up. He has handled the COVID-19 pandemic, all the challenges that have come with it, and anything high school could throw at him like a champion! He is getting good grades and has dreams to join the Air Force some day and fly the drones.

About 3 months ago, Kameron started complaining of some minor right knee pain. He didn't injure it or anything, it just showed up. For those of you who don't know our family, I (his mother) am a Physician Assistant. When I examined his knee, other than some minor swelling things seemed fine. I tried a neoprene sleeve and Ibuprofen. These helped, but his pain did not go away. After 6 weeks of persistent pain, I called our sports medicine doctor, and made him an appointment during Spring Break. 

We met with the doctor and he did a detailed knee exam and took an x-ray. The doctor agreed, his exam was normal. He looked really close at the x-ray where Kam said he was hurting and noticed a slight irregularity to the bone. The radiologist favored it to be benign (IE: no big deal) but advised we get an MRI, out of an abundance of precaution. Two days later Kam had his MRI. We learned quickly after, that the MRI was concerning for a primary bone tumor. What we didn't know was which kind. After a whirlwind couple of weeks he had a bone scan, bone biopsy, and a CT scan of his chest, abdomen and pelvis. It took a week and a half for Kameron's pathology results to come back from the Mayo Clinic:

Osteoblastic Osteosarcoma- High Grade. 

For more information: (https://www.hopkinsmedicine.org/health/conditions-and-diseases/sarcoma/osteosarcoma)

To say we were devastated by this news, is a given. Thankfully, as far as we understand, Kameron is considered in the earliest stages-- Stage II. No cancer has spread to a detectable level. 

This past Monday we met with his oncology team. He has the kindest of doctors and support team. We had met his lead oncologist, Dr. Hansen, almost 11 years ago to the date, as he was the on-call pediatrician when our son Toby was born. I remember him joking as we took our newest son home, "Well, I hope I never see you again." We laughed. And we hoped so too. Fast forward, and as we meet him again, he says, "I am so sorry you have to meet me again." 

We learned that Kameron would be admitted to the hospital the next day (Tuesday). He will need to undergo extensive baseline testing, chemotherapy, and a surgery. The plan is he will undergo 10 weeks of chemotherapy, surgery, then additional chemotherapy. Yesterday, he had a port-a-cath placed which will help deliver him medicine to help fight this cancer. Today, Wednesday, they have fully hydrated him and are beginning his first round of chemotherapy.

Our family has decided to pursue a second opinion. Not because our team out here isn't great. They are wonderful! We know the general national odds of successful treatment for Kameron's type of cancer are about 66% or so. University of Texas MD Anderson in Houston is known for being the national leader (#1) in cancer treatment and research. Their sarcoma program is 80% successful. At some point, once we can get all the insurance hoops aligned, we will travel out there for further evaluation. 

While many patient's facing such a hard diagnosis feel isolated, we have been blessed, supported, and loved on by so many in our community. Y'all have been inventive and wonderful despite COVID precautions making things extra difficult these days. Bless you. We have felt your love. For those asking what they can do to help, we genuinely don't know yet. But we have put you on our list of people to reach out to when needs arise. It takes a village, and we love our tribe deeply. You showed up and continue to show up! Please continue to pray for Kameron and our family. We firmly believe that prayer is what moves the hand of God. We have one heck of a tenacious fighter in Kameron.