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.