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!

Delayed Intensification, Part 2

We're on week 2 of this phase of treatment. The week began with Aidan's regular appointment on Wednesday - blood tests, then waiting for the results, then seeing the doctor for a checkup. This time, Aidan got the first of his 4 injections after the visit with the doctor. We opted not to keep Aidan's port accessed this week because of the new swim spa we had delivered on Tuesday.

The plan for the swim spa was hatched early in the summer. I was worried about keeping the kids, especially Aidan, entertained all summer while we weren't able to go to many public places or see a lot of people. Plus our hot tub was leaking like a sieve, despite many repair attempts, and John's joints are wearing out from running. Also, Spokane summers last about 2.7895 days, so an outdoor pool isn't something we're ready to commit to.

The swim spa was delivered on Tuesday, while the other kids were at their first day of school. Unfortunately it took most of the day to install. By the time it was filled with water, we were eating dinner. There was no way for it to heat up before bedtime, so the kids were diving into the 56-degree swimming water and then jumping into the 74-degree hot tub to warm up. Pretty funny what kids will do if they really want to.

This morning after the kids left for school Aidan swam by himself while I showered and cleaned the house. Then we got ready to go the hospital for his injection. Getting ready consists of putting numbing cream on Aidan's port and putting a tegaderm over it, and taking Zofran to head off the nausea that the chemo will cause. 

The injection was a little bit more complicated than last week because we didn't leave Aidan accessed so the tubing wasn't already in place. But it still didn't take long to access his port and do the injection. Aidan wanted to eat lunch at Costco afterward. His blood counts are good enough that I felt comfortable taking him, so we went shopping and grabbed food at the food court to eat at home. (I'm not chancing the germs from eating on those tables.) While we were at Costco, an older woman approached Aidan and asked him if he's a cancer patient. I was so nervous that he'd get mad or embarrassed, but he nodded. She told him that she's a cancer survivor. She showed him her full head of hair and told him that his hair will come back and that he'll get through it. I was so touched that I gave her a hug and then she told us her story and asked about his treatment. While we were talking another woman, closer to my age, walked by and whispered to Aidan that she's a survivor as well and wished him luck. Aidan is such a private person and easily shuts down. I was pleasantly surprised with how well he reacted to the attention. He texted John from Costco to tell him about it.

In the checkout line, a little boy ahead of us couldn't stop staring at Aidan. He was too young to know better, and I tried to convince Aidan to let me explain his bald head, but he was too upset by it. 

Delayed Intensification, Part 1

This phase began last week. Last Tuesday we went to the oncologist for Aidan's weekly blood test and checkup. The results of the blood test would tell us if Aidan was strong enough for this, the worst phase of Aidan's chemo treatment plan. The tests came back with the right numbers. So on Wednesday, we got to the hospital at 7am to start an infusion of a new drug. The infusion took a few hours, and then required 4 hours of fluids afterward. During that 4 hours, Aidan got a spinal tap (his 8th since Mar 30th) so they could inject chemo intrathecally (into his spine). In the end we were there for 9 hours. We actually had some fun - I surprised Aidan with a pretty cool Lego set that we worked on most of the day, building the 3 different scenes that could be built with the set.

Orca whale and a cute boy in a hat ;)

Lighthouse Lego set - notice the light on top

While we worked on Legos we made a playlist for Aidan on Spotify. It was fun to listen to his favorite songs and hang out together. He got a really bad headache after his spinal tap, which thankfully was not a spinal headache, but we had to stay a little longer for some IV morphine and monitoring. So he wasn't as happy going home as we had been earlier, but overall the day was much more pleasant than I had expected.

About to be put to sleep for his spinal tap

We had to go back to the hospital on Thursday, Friday, and even Saturday, for injections. The nurses left Aidan accessed, meaning that his port-a-cath has a needle in it with tubing coming out of it. The tubing gets a tegaderm (clear plastic bandage) over it and tape everywhere. It itches and gets in the way, but it makes it very easy for the nurses to clean the tubing and give the injection and let us leave. By Saturday even the short visit was too much for Aidan and he fought everything. It's difficult because I understand his frustration, but I want him to cooperate so that we can get it over with and get home.

Chemo treatment 8/10

I got up before 6 am this morning to shower and get kids ready to go where they were going while Aidan & I went to the hospital for chemo. I got the kids to friends' houses/sitters and Aidan & I stopped at McDonalds AND Starbucks on our way to the hospital. Anything to keep spirits up. And it started well. When it was Aidan's turn to have his vitals taken, he was playful. He weighed his shoes before stepping on the scale himself and joked about his height. I haven't seen that side of him on treatment day for a while and it made me happy. We played Spot It in the waiting room and we were having a lot of fun. When it came time to access his port-a-cath his mood dipped a little. He didn't put up as much of a fight as he has in the past, but didn't make it easy, either. He's so sensitive to smells right now that the wipes they use to clean his tubing make him gag and almost vomit. He had a Dum Dum in his mouth, but it didn't seem to help. Still, things were ok when we returned to the waiting room. But by the time we went back to see the doctor, Aidan was completely shut down. I had to practically carry him into the exam room. He curled into a ball on the little couch and made it really difficult for the doctor to examine him. He refused to answer questions and made rude remarks when we spoke to him. Back in the waiting room awaiting the chemo, he completely lost it. He sat on the ground and banged his head on the couch I was sitting on. Over and over. He had a bright red mark on his forehead and one on his nose, but he continued to do it and I didn't have the physical strength to fight him. I tried talking to him about it, but he got less and less receptive as we sat there. I tried every trick I had up my sleeve. I take some of the same games & entertainment to every appointment, plus I try to add some new things each time. He was angry and resistant to all of my suggestions. By the time the nurse came out with the IV pump Aidan was on the floor and I had a very difficult time getting him on the couch where she could reach his tubing. It was a miserable 20-30 minutes while he got his chemo, and de-accessing his port was a crying, fighting experience. I was almost in tears myself.

These days take a lot out of both of us. We had to go to Fred Meyer on our way home - he wanted to go so he could get the action figure I had promised him. He was starting to feel better emotionally, and I was melting down. I fought back tears in the checkout line. At home he was ok for a while, then he broke down over nothing and sobbed in my arms for quite a while. He ended up running around with his brothers playing in the backyard and we snuggled and watched Curious George before bed. I told him after prayers that I wish I could have cancer instead of him. He told me that he's glad it's him because then he gets to go to the hospital with me instead of me going by myself while he stays with babysitters and dad goes to work.