Difficulties and Setbacks

It seems every positive step forward in treatment, soon accompanies two steps backwards in Kameron's fight with osteosarcoma. Last week, two hours after beginning his most recent round of chemotherapy, he suddenly felt horrible. We were bummed, as the week prior had unexpectedly gone so well for him. The doctors and nurses took every step to repeat what they'd done the week prior, with night and day responses. It was discouraging, to say the least. 

Kameron has since developed a rare side effect to one of his chemotherapy regimens which causes painful blisters on his hands and feet, known as Hand-Foot Syndrome. Every round being more serious and more painful then the one before. He has 3 more rounds of this combination before treatment completion. The decision was made to proceed as planned until the side effects become intolerable. If that happens, they would go down to half the dose to minimize the side effects. Tough and hard decisions when we know that this combo of chemo kills ~100% of his tumor cells. 

Kameron was discharged home Monday evening, once his side effects were at a manageable to stable levels, and his chemo levels were at a safe level to send him home. He has also developed numerous painful mouth sores which make eating difficult and painful. 

This week Kam had woken up with a bloody nose each day. Yesterday, his nose bleeds wouldn't stop with the usual bag of tricks we know to do. Kam had to go into the oncology clinic (it was so nice to bypass the ER given the current state of the COVID pandemic our area is in). They checked his blood. While he is certainly anemic and low on platelets, it wasn't low enough that oncology felt like it was likely contributing to his nose bleeds. The oncology (cancer) doctor consulted our ENT. He wanted him to get platelets, so he did. He also advised trying some easy things in their clinic. After an hour, they still weren't completely working, but things were better. We were going to be sent home to monitor Kam closely, when Kam began spitting up blood.  

The oncology doctor consulted our ENT again and it was decided he would come in to the ENT office and see his PA (a friend of mine). Kameron was absolutely exhausted. And I needed to get him to yet another doctor's office. We arrived at the ENT and he was given the option to pack his nose for 3-5 days or cauterize the bleed. Kam decided on cautery. It was painful and hard for him. But ultimately, he is happy with his decision because it worked and allowed him to go home breathing through his nose. This morning he woke up without a bloody nose for the first time in many days. 

Kameron was supposed to be seen today to consider admission for his next round of chemotherapy. Unfortunately, his levels yesterday were too low to meet criteria. We will check in again tomorrow to see if he has met criteria at that point. We also were informed that each time before he is hospitalized he will need to undergo a COVID swab 2 days prior. This is certainly complicated by his bloody noses. More hoops to jump through, when already faced with a seemingly unending set of hoops. 

Despite the many difficulties and challenges, there have been bright spots. One of our dearest friend's family has this saying that if you find coins on the ground that "grandpa is looking out for you." Kam found a penny on his seat in the oncology clinic before everything went sideways. I found one at the carwash the other day. It felt like a hug from heaven. 

We've had Chinese friends continue to bring beautiful homemade Chinese food and dumplings to help encourage and entice Kam to eat when he feels so miserable. Yesterday, we had learned about Hayley Arceneaux, one of the Space X Inspire4 astronauts that launched yesterday. A physician assistant and osteosarcoma survivor. There is a new hero in this house. And its been fun to watch the Netflix special and watch the launch last evening. Today, we have a dance party playing 90's Rock Anthems on Spotify.  

Continue keeping Kameron in your prayers. He is halfway through his treatment, and we know it will get worse before it gets better. As we navigate additional hoops and challenges that never cease to arise in this journey. Pray as we also parent 3 rambunctious younger brothers with their own needs and challenges. Thanks for holding us up in prayer, good thoughts, and well wishes. We appreciate and love our tribe.