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