Delayed Intensification, Part 3

After getting his 2nd injection of the week today, then eating lunch at Costco, Aidan fell asleep in the car on the way home. I couldn't get him inside, so I let him sleep while I unloaded the car and cleaned the house. Luckily it was cool outside today so it was the perfect temperature with the windows and back of the car open.

Aidan's mood worsened as the day went on (which is not abnormal for him). But he seemed to be feeling ok until everyone got in the swim spa after dinner and he was too tired and nauseated to join. While I put the other kids in bed, Aidan worked on drinking his daily cocktail of protein powder (to help cut down on mouth sores from the chemo) and miralax to keep his bowels moving, mixed with whatever he feels like drinking. I gave him Zofran in hopes that we could keep the nausea at bay. Then I gave him his chemo pills, which he swallows with applesauce. That kid is a pro at swallowing pills! I had him put on jammies while I tucked the big kids into bed, and then he got to snuggle with John and me on the couch and watch tv for a while. I gave him the Zoloft he takes at night (to try to help with the anxiety and depression that are normal for kids fighting cancer). It's a small pill and he swallows it without anything to wash it down. A few minutes later he started to have an allergic reaction. This has happened a handful of times in the last 2 months or so, and we're struggling to find an explanation. His ears and throat start itching, and it's very upsetting for him. We give him Benadryl, and the itching subsides and he falls asleep and sleeps well, but it's frustrating not knowing what he's reacting to. It must be fairly normal, because the doctor doesn't seem concerned when we tell him about the incidents. Also, we have an epi-pen on hand because allergic reactions to chemo are common. This is comforting, but alarming because I'm always wondering if this is the time that Aidan's throat will start to swell and I'll have to jab that pen into his leg or something. Man, I hope John's home if that ever happens!

As we were waiting for the Benadryl to kick in, Aidan started getting severe heartburn. From the Benadryl? The chemo? I don't know. All I know is that it's as close to hell as I ever want to come. My poor child is bald with not very many hairs trying to come in. He's scarred and bruised on his chest from the port-a-cath and the many recent accesses. He's nauseated from the chemo, and the nausea medicine causes headaches that we deal with around the clock. He's writhing on the floor because he can't stand the itching in his ears and throat, and now he's grabbing his chest because of the heartburn. All we could do was wait for the Benadryl to kick in and hopefully knock him out. I held our handheld massager and tried to massage him while John tried to rub his back, but we couldn't stop the writhing and crying out in agony. I finally left and said a prayer and cried in the other room.

After an intense 20-minute period, at the least, Aidan's symptoms started to quiet. He didn't fall asleep immediately as we had hoped, but he was able to calmly watch tv with us until he finally succumbed.

I with that I were battling cancer instead of him. I can't stand watching him suffer and being, for the most part, powerless to help him fight it. I hate that more often than not his frustration with his pain and discomfort leads to anger toward me. I understand that he has to take out his feelings somewhere, but it's painful enough without him pushing me away and saying mean things.

I'm so grateful to say that this week I'm finally starting to see a light at the end of the tunnel. This phase lasts 2 more weeks. No more injections after Saturday, but his counts are expected to get super low and if he avoids a hospital stay because of infection we'll be beating the odds. (I fully plan on him beating the odds!) But after the next 2 weeks, he gets treatments every 10 days for 40 days, and then we should be in maintenance! I don't even really know what that means, except that the intense treatments should be behind us. And he'll start working his way back to school. And maybe he can start to be a normal kid again. I can almost see the end in sight. This is the best I've felt about things since getting his diagnosis in March. Hallelujah!