No Evidence Of Disease (NED)!!

Kameron continues to get stronger and sassier each day since his last chemo treatment. His blood counts have reached a safe enough level that his oncology team is discussing possibly removing his port. After undergoing multiple scans, Kameron's medical team (radiology, oncology and orthopedic surgeon) all agreed that Kameron shows NO evidence of active disease (NED)! Kam saw his orthopedic surgeon this morning and he agreed that all is well. Kam, in the future, will need to have a job that doesn't require heavy lifting, running or jumping for the remainder of his life. 

Kameron is diligently working each week with physical therapy to improve his strength and endurance. We are seeing positive improvements and growth on that front, each and every week. He is hoping to be able to get a job once his immune system is back to normal, which won't be for 6 months post-chemotherapy. We still have to take extra precautions and avoid potential infection exposure to Kam.

Kam has nearly regained all of his pre-treatment weight and is eating as a healthy 20 year old man typically does. He still needs medications to help with his nausea, which is very well managed at this point. The oncology team says it could take him a few months to not need medications and for his GI system to return to its usual as well.  He is quite happy with having less and less doctors appointments and for getting to sleep in his own bed. His cat Petey is glad to have Kameron back at home on a full time basis, and he regularly is found on the couch with Kam supervising his video games.

An example of how well Kameron's eating these days

We are so grateful for everything that Kameron's medical team has been able to do for him and our family. Kam is cancer free, y'all! It's everything we have been wanting and praying for him. Thank you, Jesus! While there is always a chance the cancer could come back, his medical team continues to watch him vigilantly. Kam will continue to see his cancer doctor monthly, and have repeat scans this first year every 3 months. We will likely hold our breath a bit until we can hear "no evidence of disease" for some extended period of time, on repeat. 

The Thank You drawing I made for Kam's Cancer Clinic

Kam's hair is starting to grow back in.  It's incredible that the only physical sign of what his body has been through is fresh growing hair, a scar on his right knee, and some unchanged minimal high frequency hearing loss that won't even be noticeable or problematic for him. He is continuing to dream dreams and is planning on what may be next for his future once his immune system returns to normal. When you've seen your kid have to lose their dream due to circumstances beyond their control, seeing him plan for a future again is so exquisitely BEAUTIFUL. We are excited for him. This young man has battled hard and strong. We are grateful for the opportunity now to rest a bit. 

Thank you for all of your continued prayers, love and support. Showing up for our family when we were hardest hit, has meant the world to us. And it matters a great deal.

Celebrations and Next Steps

Kam did amazing again with his last round of chemotherapy. The medicine cleared his system by Monday morning, and after a reassuring/unchanged EKG and echocardiogram they did for monitoring his heart, he was discharged home. The nurses and staff on the oncology floor have become almost like a second family to us. We adore them. They couldn't let Kameron leave without him leaving there in style! So they had a mini-COVID friendly celebration for him before he WALKED out of the hospital with one of his favorite nurses. 

This was the first time, after getting Methotrexate, that Kam has been able to walk himself out of the hospital, since I can remember. He did not develop blisters to his hands and feet, whatsoever. A huge answer to prayer! He had a slightly irritated throat, but that cleared up by the next day with some glutamate. He was able to finish strong and with as minimal suffering as one can get with chemotherapy. 

Kam walking out of the hospital after his very last chemotherapy treatment

While in the hospital his nurse assessed him, like usual. She asked how his hands and feet were and he replied, "good." Then she asked, "How's your mouth?" Kameron: (without missing a beat) "Still talks back!" A joke he has since repeated to his oncology doctor. You know Kam is feeling really well when he is extra spicy. And these amazing oncology doctors, nurses, and CNA's show up for it. God bless every single one of them!

Kam had a significant bloody nose Wednesday morning that would not stop. After the usual methods failed, I tried one last trick on him that the ENT team had taught us. Where we live COVID-19 numbers are very high and there are a lot of sick people at every ER and urgent care. So an ER visit, at this juncture, would be a huge risk to Kam and we wanted to avoid it, if at all possible. Thankfully, the ENT trick worked like a charm and he has not had a bloody nose since. 

Kameron got to celebrate and formally ring the bell with a small group of his tribe support yesterday at his cancer clinic. Unfortunately, due to COVID protocols, not everyone was able to attend. So we have included the YouTube video. His labs are doing ok-- he is slightly anemic and slightly low on platelets, but this is nothing unusual for him at this juncture. Nor did it require any transfusion. He was thrilled to be able to see some people he hasn't been able to see in almost a year. 

Kam walking into his clinic celebration of his last chemo

After his celebration we took him out to eat at his favorite Chinese restaurant. He got his usual, stole samples from everyone else's plate (also his usual), and he has been eating well again. We got some good fortunes from our fortune cookies, and are taking them as a good omen for Kameron's future. For dinner last night he wanted crab, lobster, and oysters and chocolate fondue for dessert. So he got them!

Kam's Fortune

Mom's fortune

Kameron's requested seafood feast

Fondue with the family. Complete with Kam dumping the brownies on Toby's plate (since that's all he'd eat.) We were laughing so hard we were crying.

Now Kameron enters into a phase of re-assessment. He had a COVID booster and flu shot today to help protect him fragile immune system, now that his chemotherapy is done. It will take 6 months for his immune system to return to a normal-ish state. He had an x-ray of his leg as well. Tomorrow he will have a MRI of his leg. And on Monday he has a bone scan and CT of the chest. He will start physical therapy again next week, this time to work on getting his strength back. He has been diligently working on his strength when he can. He showed us recently how he can take the steps now, one leg for each step, and sometimes he can even skip a step! Pretty incredible when you realize how crummy chemo makes a person feel. 

We meet again with his oncologists on Thursday where he will undergo another round of lab work and we are prayerful that we will hear the words "No evidence of disease (NED)." Please join us in this prayer. If we do hear he has no evidence of disease, once his bloodwork reaches acceptable levels, they will plan to remove his port. He will then check in semi-frequently with his doctors and undergo repeat scans every 3 months. 

Kam is starting to talk about his future more and more and what he plans to do next. For now he plans to work on getting stronger and working on getting his drivers license. He is considering his career and school options. Please pray for him as he is considering what his future holds for him. We are excited for him.

Crossing the Finish Line

Kam did awesome with his last chemo treatment. We were amazed that he developed NO sores anywhere. Furthermore, his appetite stayed normal for him and he has even put on a bit of weight! The trajectory of the Hand Foot Syndrome Kam gets with Methotrexate is that it typically worsens each round. Not that it suddenly and inexplicably stops happening. We are calling this one a Jesus miracle! A very much needed one exactly when he needed it. Prayer works, y'all. And we cannot thank you enough for being a part of Kam's Prayer Warriors. 

Kam was able to enjoy watching "The Eternals" and "Sing 2" with us this past week and has been busy watching funny TikTok videos and playing video games with his brothers. 

Kam telling Petey this morning he was heading to the clinic. Petey hates it whenever Kam is gone.

Today, Kam went back to the cancer clinic to see if he would make counts for his last chemo treatment. We were all concerned, since he has been feeling more dizzy lately, that he wouldn't. This can be a symptom of low blood counts. Kameron told the check-in ladies he'd likely be heading home to play video games after his appointment. After his lab draw, he got a token for the clinic toy machine and got a funny dice he has been trying to get for months, in his favorite color. It functions like a Magic 8 ball where you ask it a question, then you roll the dice for an answer. We asked it if he'd make counts and it answered, "No!!" 

Needless to say, I wasn't exactly convinced he'd make counts today. Kam is so rarely wrong about his hunches. I told the entire staff that they needed to join me in wishing and praying he'd make counts. There is strength in numbers. And we need to be done with this battle. 

Thankfully, the nurse came in shortly after and informed us of the happy news: "Kam made counts for his FINAL chemotherapy treatment!" Y'all, I am so thrilled I want to shout it from the rooftops and tell random strangers at the grocery store. So I'm going to say it again in all caps for those in the back who may not have heard me:

KAM MADE COUNTS! HE IS GOING TO GET HIS FINAL ROUND OF CHEMOTHERAPY TONIGHT! 

This means this is his last hospitalization, God willing. And that his MAP protocol for his osteosarcoma treatment will be completed. Furthermore, he will complete all of the treatment without any need to reduce or forgo certain medications to kill his cancer. He got through it. Gosh, that's HUGE when you're dealing with weird side effects! We've now been on this journey for 10 months. And we are so very ready to be done.  

Bye Felicia! Bye osteosarcoma! Don't you EVER come back knocking around here again. Get on out of here!

Kam is getting his 6 hours of hydration and once he meets parameters, he will have his last infusion of chemotherapy tonight. Then we wait 72+ hours for the medication to safely flush out of his system so we can take him home. This will likely be this Monday for him. 

Next week we are celebrating BIG! This battle has been long and we are quite frankly, exhausted. Not the kind of exhausted that sleep helps. While I've never run a marathon myself, I imagine it feels similar. We are on the last leg and the finish line is right there and within sight! We are tired, everything aches, and we want to stop and rest. But we know we cannot. Not just yet. But soon. Very, very soon.

Please keep Kam in your prayers as he gets his last round of chemotherapy. Pray this last round kills any remaining micro- cell of osteoblastic osteosarcoma in his body. That he would again miraculously not develop any blisters. That he will stay nice and boring this hospital stay. For Jesse and I who are battle weary, but determined to finish strong. For Kam's brothers who are ready to have him back full-time and done with cancer. For Kirby who has done an amazing job helping our family in this really difficult season. She's been a down right angel. God knew we'd need her, and what a gift she has been. And that Kam will not relapse. 

Thanks for sticking with us during this grueling, long, and arduous battle. Let's kick cancer to the curb! Thank you to all of you who have shown up, loved us well, and helped lift our arms when we are tired. It has taken a village. 💓

Two....

Kam made counts today! Which means he was hospitalized to proceed with his second to last dose of chemotherapy. Tonight, he will get his methotrexate infusion, and then we wait the 72 hours for the medicines and fluids to flush it out of his system so he can safely come home. He is expected to get his final round of chemotherapy next Thursday! Fingers crossed. 

I love how well the amazing staff at St Luke's love Kam. Down to the fat kitty drawing just for him. 

Kam telling Petey (his cat) he was likely to be in the hospital for a few days

We enjoyed a lazy New Years Eve at home watching the new season of Cobra Kai together. All of it. The boys all stayed up to midnight to wish 2022 welcome and I went to bed early. Let's just say 2022 is going to need to earn my respect. 

Kam enjoyed the extra time at home playing video games with his younger brothers and using some of his Christmas money. We made his favorite meal of hot pot last night, at his youngest brother Noah's request, to celebrate his last 2 rounds of hospital stays. 

Please join us in prayer as we've learned of two other families we love dearly who've unfortunately joined our "cancer sucks" club. It's not a membership we want or would wish on anyone. Please pray that the sores Kam gets on his feet from the chemotherapy would be mild to non-existent. And that my jaw would finally release (it's better but not resolved). 

Much love to you all. ❤ 

Kam Turned 20!

Kam turned 20 years old on December 21st and we celebrated at home. We made him his favorite things for breakfast, he got to go out for his favorite seafood with a good friend for lunch, and had hot pot for dinner. And he had his favorite cake--a Tres Leches Cake. He got a Minion Lego and a Stephen Curry ("the three point machine, mom!") jersey he had requested for his birthday presents. And he got sent letters, birthday cards, and gifts from loved ones from all over the country. He said it was his best birthday to date. Thanks to everyone who reached out and helped make it special for him. 

A few days later we got to celebrate Christmas at home. Together! Jesse, Kirby and I made a Christmas Eve feast and we had prime rib, some Chinese side items, macaroni and cheese, homemade eggnog, yeast rolls, various cookies, fudge and muddy buddies. A little bit of something everyone loves. We got matching jammies and even the dog got her own set. We had a really good Christmas and everyone was happy with their gifts. And mostly, the gift of being together. A day of games, rest, play and togetherness. Thank you, Jesus. 

Last week, we anticipated Kameron would proceed with his second to last round of chemotherapy. Unfortunately, he did not make counts. I think Kam has just been determined to spend exactly zero holidays in the hospital these past 9 months of treatment. He goes back in again to the cancer clinic this week and is anticipated to make counts then, and he will likely be hospitalized for the next couple weeks with just a couple day break in between treatments. Which means he will be done with his MAP chemotherapy treatment for his osteosarcoma very soon, all count dependent. 

The stress of all we've been through the past couple years hit me late on Christmas Eve and manifested as lock jaw (trismus). To be clear, no-- I do NOT have tetanus. I've been grinding my teeth at night since I can remember, but my jaw has been popping and intermittently locking since October. But it went out in a BIG way on Christmas Eve. This has made talking and eating difficult for me. After consulting with my doctor and my dentist (all of whom I adore), and a normal x-ray later it was determined that my TMJD and overall stress have been contributing to it. Ultimately-- I need to stress less. Which is much easier said than done. I've been doing what I can to reduce and manage my stress, prevent my teeth from grinding, and finding things that bring me joy and relaxation. I've rekindled a former love I've had for art, and have been taking wheel pottery lessons with Kirby, and I've been drawing a lot.

Thank you for your continued love and care for our family. Please join us in prayer that Kam makes counts this week and he can get going on completing his last two chemotherapy treatments. As you can imagine-- we are all ready to be done. This battle has been a long one. Please pray that my jaw unlocks soon. It's been better, but hasn't completely released yet. 

Three...

Kam ended up having only a couple minor blisters on his feet with his last round of (Methotrexate) chemotherapy. He returned to the cancer clinic on Thursday, and while he was close, he didn't quite make counts to proceed with his in-clinic Doxorubicin. They told him to enjoy his weekend and come back on Tuesday. Kam was thrilled because that meant he would get the week of his upcoming 20th birthday and Christmas off for a break, instead of being hospitalized on Christmas for more chemo! Silver linings. 

Yesterday, in clinic, Kam made counts and got his first of two infusions of his very last round of the Doxorubicin. He is currently receiving his second (last) infusion today. Kam has gotten through all of these rounds without any evidence of cardiac toxicity, which is huge! Cardiac side effects are common with this type of chemotherapy, and so far Kameron's EKG's and echocardiograms look identical to his pre-treatment studies. 

We are amazed at all Kameron has been through. He has largely maintained a strong "let's do this" demeanor throughout these past 9 months of treatment. His body has been through so much. But physically, aside from some minor high frequency hearing loss and temporary blisters-- you'd never even know it. 

After today, Kam has just 2 chemotherapy treatments left. These will be hospital stays which, he doesn't enjoy. We are hopeful that these will feel easier for us, as these are the last two chemotherapy regimens of his planned MAP treatment.

We plan to thoroughly enjoy Kameron's 20th birthday and Christmas with the family next week. We were surprised with a sweet and generous secret Santa gift this past weekend that warmed every single one of our hearts. Thank you, whoever you are. It meant a lot. ❤

Thank you to each one of you who has reached out to us, checked in on as, and genuinely asked how we are. It's kept our spirits up and the demeanor to keep on going. Merry Christmas to you and yours, friends. 

❤Love, The Maddux Family

Four.....

The blisters that Kam gets on his feet from his (Methotrexate) chemotherapy, worsened this past round and has caused him significant pain. He had trouble standing or walking. Fortunately, the nurses had a trick up their sleeves and brought in special bandages for his feet, that helped lessen some of his discomfort. Despite this very painful development for him, Kameron was able to make an early "jail break" from the hospital and came home at the 72 hour mark. We didn't expect it, as he has never made counts on time before. He enjoyed getting to sleep in his own bed and snuggle his cat, Petey. We are counting this one as a miracle! Thank you, God! 

Kameron ready to leave the minute he heard he made counts for discharge.
He teased the nurse "you have 7 minutes to get me out of here." 

Kam cuddling his cat Petey after his discharge from the hospital

After a whirlwind three days at home, he was back at the cancer clinic on Friday to see if he would make counts for his 4th to last round of chemotherapy. He made counts and was hospitalized yesterday. Kameron got his chemotherapy late last night. So far he is doing very well. He has no additional blisters yet, is in decent spirits, and he is eating better than he typically has his previous hospitalizations. The dietician commented how he has been doing a good job of keeping his weight stable over the past month or so, and has had no drastic weight loss! He will likely be in the hospital till Tuesday, as we await the medication to work its way out of his body to have him safely at home.

Kam had authentic Chinese food made for him and brought to him in the hospital.

Thanks a million, Jane! We love you!

After this hospitalization, Kam checks in with the cancer clinic late this coming week to see if he makes counts for his last round of in-clinic Doxorubicin. This medication is administered over a 3-4 hour period, over two days, and he gets to go home once they are done. As you can imagine, he prefers this form of chemotherapy because he gets to go home. Then he will have a 1 week break before the last 2 rounds of in-hospital chemotherapy begin, all of this is blood count dependent. 

Thank you for continuing to keep us in your thoughts and prayers. And for checking in on us from time to time. We ask for continued prayers that the remainder of the chemo kills EVERY SINGLE LAST micro-cell of osteosarcoma in Kameron's body. Once chemo is done, and scans have been completed, our next goal is to achieve NED (no evidence of disease). We ask you join us in praying for that. 

Between rounds of chemo I found two penny's. A good luck sort of thing for our family.