Wednesday, December 15, 2021

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

Saturday, December 4, 2021

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. 

Saturday, November 27, 2021

Thanksgiving and More Chemo

Kameron went to the cancer clinic on Monday. His red blood cells and platelets were doing better and he was no longer experiencing symptoms of anemia, but his white blood cells remained critically low. Too low to proceed with his 5th to last round of chemotherapy. We were told to go home and enjoy Thanksgiving together. And to come back on Friday to see if Kam's cells would bounce back by then, but we were cautioned it probably would still be too low. 

We spent the early part of the week getting groceries and setting up for Christmas. Kirby got us a real Christmas tree and she and Jesse got it set up in the living room. The stockings were placed, and the cinnamon pine cones really helped jolly the house up a bit. 
We enjoyed being home together as a family to celebrate Thanksgiving. It was just us, but it was warm, yummy, and I was grateful to get to be together and not in the hospital. Jesse is an amazing cook and roasted a perfect turkey. He also made Kameron's Thankgiving favorite: stuffing. Jesse, Kirby and I spent most of the day in the kitchen while the boys played games, and watched the Macy's Thanksgiving Parade, the National Dog Show, and a new Christmas movie. 
On Friday, Kameron continued to gain weight (inching closer and closer to his pre-treatment weight). Kam says, "4 or 5 meals a day keeps the dietician away!" He has been doing a good job of snacking throughout the day to avoid more weight loss. We also learned at that visit that his white blood cells had bounced back to a safe level to (finally) proceed with chemotherapy! He was admitted to the hospital yesterday afternoon and had his 5th to last round of chemotherapy last night. After this current hospitalization, he has 4 more treatments left.

Many have asked us, after that... then what? Kameron will then undergo numerous scans: a MRI of the leg that had the tumor, a bone scan or PET scan, and a CT of his chest to look for any more tumors. He will also be closely monitored by his oncology team. Once he is doing well and there is no evidence of active spread of his cancer, then he will be seen every 3 months for at least a year. Then every 6 months the next year after that. It will take his body 6 months to recover from the chemotherapy and for his immune system to be normal-ish. 

I say "normal-ish" because there are some long lasting effects from treatment Kam will always have. Such as, a degree of irreversible hearing loss. His cancer is a super aggressive type, and he will need to be monitored every year for any heart side effects or a resurgence of cancer for the rest of his life.

Please continue to keep us in thought and prayer. We've admittedly been, at times, discouraged. Thank you to those of you who reach out and check on us. It means a lot. We know Kam and our family are not battling this alone. 

Friday, November 19, 2021

Five Treatments Left

Kameron handled the chemotherapy in clinic like a champ! We saw little change in his energy level and he never got sick once! More importantly, he was able to continue eating well and has even put back on some of the weight he had lost. After his last chemo treatment a couple weeks ago, I took him out to Red Pavilion, his favorite Chinese restaurant here in the Treasure Valley. I told him "mom's paying" and he ordered 3 things off the menu. I was happy to pay! It is so good to see him have an appetite and eating heartily. 

Last week Kameron enjoyed his expected week break from treatment and all was well at his weekly check-up. Our two youngest sons were able to get their COVID vaccines last Saturday and it was a HUGE relief for our family. As they say in the cancer world, "if you want to protect the castle (Kam) you fortify and take care of the moat" (his family, those closest to him that could and would most likely get him ill). Unfortunately, Noah, Kam's youngest brother, started coming down with cold symptoms the next day. We immediately quarantined Noah and Kameron away from one another, and as Jesse and I are used to saying by now, "we divide and conquer." Thankfully, Noah was NEGATIVE for COVID, but we still have to keep them quarantined from one another none-the-less to protect Kam. 

This week we anticipated a hospital admission for Kam's next round of chemotherapy. Unfortunately, he did not make counts for admission and was quite anemic (critically low) on red blood cells. Furthermore, he was showing mild symptoms of anemia: fast heart rate when getting up, headache, and mild lightheadedness. So yesterday he received a blood transfusion in clinic and was sent home. His platelets (which help with blood clotting) and white blood cells (which help fight infection) were also critically low. So he failed meeting admission criteria this week on multiple fronts.  His energy level and spirits remain good. For this we are grateful.  

We also celebrated Kameron's Gotcha Day on Tuesday, the same day as his brother Noah's birthday. It's hard to believe he became our son 6 years ago. It often feels like he has always been our son.  Kameron returns to the clinic on Monday to check in and see where he is at with his counts and if he meets admission requirements, at that point. This delay has extended Kam's anticipated end of treatment to sometime early January 2022. 

As we head into the holidays, we'd like to wish you and your family a Happy Thanksgiving. We are grateful for those in the tribe that continue to pray, send encouragement, and love on us in the various ways many of you have in this difficult season of life. We ask for continued prayer and encouragement as we get closer and closer to the finish line. Much love and blessings to you all. Thanks for battling with us. 

Thursday, November 4, 2021

Kam begins Cycle 5 of Treatment for Osteosarcoma

Kameron did not make counts last week to start his 5th and final cycle of chemotherapy, so he had an unexpected week off. For those who've closely followed his story, this means he will not be done with treatment until after Christmas. This expected end date of treatment is constantly shifting, as the doctors say, we cannot make bone marrow make cells any faster then it's going to. Today, he made counts and starts with the in-clinic chemotherapy and he will come back in tomorrow for day #2. He was happy to hear he made counts this week. He is ready to finish treatment and be on the other side of this battle.

This cycle of chemotherapy is anticipated to be a total of 8 weeks long. He loses 1 of the 3 chemotherapy medications he has previously been given. And now there are only 2 one week breaks over this 8 week cycle. And 4 of those weeks will require a hospital admission. This means he is likely to be spending Thanksgiving and Christmas in the hospital. 

Kameron enjoyed his extra week off playing video games with his brothers, building some of his Monkey Kid Lego, trick or treating at the Oncology clinic, watching movies and TV, and we went to a local retro arcade as a family. Noah (the youngest brother) was beating Kameron at the game Street Fighter. Kam thought he was playing the computer. When he realized it was the youngest brother repeatedly defeating him, that lit a fire in him to overcome, that gave all of us a good laugh!

A lot of you've asked what you can do to help during this difficult season. One request I have is if you have leftover Halloween candy you want to get rid of, we can take it off your hands! The cancer clinic has recently been down to bubble gum in their candy supply. We brought in our leftover chocolate lovers bag from Halloween and it brought smiles to a lot of kids faces! Please message me or Jesse if you'd like to donate. Please donate fresh/recent/untampered candy only. These are sick kiddos with fragile immune systems. Another option is, please donate blood or platelets to your local blood bank. These donations help kids like Kameron (who has had 2 platelet infusions so far in his treatment).

Thank you for your continued prayers, encouragement, and genuine love and support that you've held for our family. We are getting closer and closer to the finish line. Today and tomorrow's infusions mean Kam has 5 treatments left after this week!

Saturday, October 23, 2021

... 7........

Kam went to the cancer clinic on Friday for his weekly check-up and possible admission for his next round of chemotherapy. He made counts and was admitted to the hospital yesterday. Last night he got his 7th (to last) round of chemotherapy. This is the medicine that causes the blisters on his hands and feet. A very rare and unfortunate side effect. He has already experienced blisters to both feet the previous round of chemotherapy, that seem to be healing well. One of his cancer doctors told him "you know that's really weird, right?" I explained to Kam that was doctor code for "you've been super interesting and we plan to talk about you at our next conference with all our doctor nerd buddies."

He also had his monitoring chest CT his last hospital admission, which showed the 5 nodules in his lungs remain unchanged since his initial diagnosis in April. Furthermore, the oncology team and radiologist said the appearance of these nodules "don't look like cancer." All things considered, this was the best news we could get! The plan is to keep watching them for any changes.

So far, this hospital stay, he has remained quite "boring." Which, in the cancer world, is a very very good thing. It's never good news as the patient or family to be interesting or exciting to your medical providers. He underwent a screening echocardiogram (an ultrasound of his heart) yesterday to monitor for any heart side effects, known to be possible with one of his chemotherapy medications. This turned out normal and unchanged. For now, Kameron mostly rests. He occasionally asks for food or watches videos on his phone. We like boring. Boring means you get to go home, once your treatment is done, as anticipated. 

Today, we got some unexpected good news. One of the oncology doctors (Kam has a team of 4 doctors) rounded and notified us that his next chemotherapy cycle, some of the medication can be done in their office and he may not need to stay in the hospital next week! This was very wonderful and exciting news. No offense hospital, thanks for saving our man-cub and all, but we would LOVE to see you a lot less than we already have to! This means of his 6 chemotherapy treatments he has left--- only 4 more would require a hospital admission. 

Should Kam make counts for each of the 6 remaining chemotherapy treatments, he will likely be discharged on or around his birthday. Please keep this in your prayers. Kam has been brave and strong this entire battle. He has continued to desire to be done in time for his birthday and Christmas. We want this so badly for him and would welcome any and all prayers in this regard. Also, he has started to talk more about what he wants to do after this battle is over for him. Please also keep this in prayer. We know that whatever Kameron sets his mind to, he does. And he does it with excellence and strength. Thank you friends, for joining us in heart and prayer for our guy. It really means a lot to our entire family.  

Friday, October 15, 2021

Last Two Week Break, Misfortune, and Fortune Cookies

Kameron made counts and was admitted to the hospital again this morning for his next regimen of chemotherapy. Yes, he is hospitalized each time he gets chemo. No, it's (unfortunately) not possible for him to do this outpatient due to the type of chemotherapy his specific cancer requires. The good news is he has 8 treatments left for his osteosarcoma protocol. He has 7 left after this current hospitalization.

This regimen of chemo is the one that will, inevitably, cause sores to his hands and feet. This rare side effect is unfortunately, anticipated to worsen each combo (he gets 2 of these back to back) that he does. He is expected to have 6 of the 8 remaining rounds with this form of chemotherapy. The plan for now is to trudge ahead and continue with the protocol until Kameron cannot tolerate it anymore. If/when that happens, the plan then is to do half of the dose. These are what we call in medicine "a rock and a hard place" kinds of decisions.

Kameron enjoyed this last 2 week break from chemotherapy that he is expected to have. After his next two rounds, things will speed up for the last 6 treatments with only a couple 1 week breaks in-between. We remain hopeful and prayerful that his chemo treatments will be done in time for his birthday and Christmas.  He spent this break playing video games with friends and his brothers. He also got to spend time with his cat Petey. These two have really bonded over these past few weeks. He is the best cat dad.

Kameron & Petey

We got a good scare this past week when our youngest son quite suddenly spiked a fever and started coughing. Our youngest two sons are not yet eligible for the COVID vaccine, and it unexpectedly put me into an IMMEDIATE quarantine with our youngest. And it had Jesse holding down the fort with our other 3 sons. But regardless of what virus "it was" we have to immediately quarantine away from Kam due to his low white blood cell count. I took our youngest to a local urgent care and had him tested for COVID. Thankfully, his fever broke within 24 hours and his test was negative. We've had to continue quarantine for him to keep Kam away from ANY possible viral infection, as his immune system cannot handle it. 

Our dog Harley's social distanced visit while we awaited COVID test results 

Please continue to pray for Kam. And for his youngest brother, who is still recovering from a viral bug. For our family, as we've had to dive in, dig deep, and divide and conquer right before a really grueling set of back to back hospitalizations. Which, already keeps our family separated for multiple days at a time. For our friend, Kirby who has gone above and beyond to help our family out in a million different ways in this hard season (all of which will likely embarrass her if I tried to list them out here, so I'll refrain). She has been a gift to our family. She helps to keep all of us moving forward when we feel we want to give up. It's an incredible blessing to have friends that hold up your arms when you feel you can't endure much more. 

If you know Kam well, then you know he has a knack for knowing "good" things. Whether it be picking out the best cat at the rescue shelter, the best foods at a restaurant, music, you name it. He just knows good stuff! Tonight his fortune cookie with dinner couldn't have been ANY more accurate! So I'll leave you with this....