The best rice

Ezra and I are making our way through another week away from home. We are mostly doing fine, suffering only a bit of boredom.

Ezra’s especially immunocompromised state means indoor play spaces aren’t a great idea right now, neither is being around too many other children. This means we are very limited as to what we can do during the week.

Ezra has also had some muscle weakness and other discomforts caused by his most recent week of steroids. This means adventuring on wet and icy walking paths is a tad too nerve wracking for me – and not high on his list of things he wants to do.

We have spent a bit of time in the backyard at the place we are staying. What a blessing to have this space. We have also wandered over to a couple of different parks. But, most of the time Ezra and I can be found doing some homeschool work, crafting, playing games, playing video games and watching TV.

While Ezra dominates the TV during the day, once he’s sleeping Cody and I have been watching older episodes of The Amazing Race separately, but together.

Because the steroids also affect Ezra’s mood, he has also become less tolerant of me doing something that isn’t about him. That means if he happens to wake before I have joined him to go to bed, he is immediately annoyed that I am not laying down beside him.

The other day, when we were leaving the hospital, Ezra asked me why I have to watch so much of “the best rice.” Confused, I asked him to explain what he meant. I eventually figured out he meant “The Amazing Race,” and have since renamed the show The Best Rice.

Bacon, eggs and toast for breakfast make a very happy boy.

Ezra’s renaming of the show is very on brand for him right now. He is very fixated on food (another steroid quirk), being satisfied after a meal for no more than an hour. He’s eating fairy normal things this time – no crazy need for Wendy’s cheeseburgers or shrimp chips, but still eating lots.

It’s a bit crazy to think that three months ago he had an NG tube inserted because he wasn’t eating. Now the complete opposite is true.

This week we have blood work on Friday to determine if we can move onto the second half of this cycle on Monday. Despite being very careful about exposure to cold and flu bugs, Ezra does currently have a very minor cough. Prayers that it would clear up quickly, on its own, are appreciated.

Moving on from liquids

Big news! Ezra has figured out how to swallow tablets. This means we can start switching all of his medications from liquids and suspensions to tablets and capsules.

A couple of months ago I asked Child Life if they would work with Ezra on learning how to swallow pills. The Child Life Specialist gave it her best shot but in the end she looked at me and said, “Sometimes, some kids just don’t figure it out.”

🤨

So, I let it be. I resigned myself to the fact that Ezra would need everything in liquid form for a while yet. While he no longer fights us on taking his medications, they don’t taste great and he won’t take them without juice. It also takes hours longer for the pharmacy to prepare our refills because they have to make the various suspensions.

Then, on Day 1 of this cycle the hospital pharmacy delivered to me two bottles of steroids in tablet form for Ezra. I said he didn’t do pills, but the pharmacist seemed reluctant to have the prescription changed. After checking that I could just crush them and feed it to him on a spoon with some jam or whatever, I told the pharmacist that it was fine, we would figure it out.

That first night Ezra drank almost half his water bottle trying to get two pills down but by day four he was almost a pro, by day six, he was swallowing them without issue, on the first try.

These tablets are small, and I knew some of his regular medications come in rather large capsules, so we decided to practice with Tic Tacs as well. The Tic Tacs are more difficult for him to swallow but he’s getting them down now fairly quickly as well.

This is just such a big milestone for Ezra (or maybe just for me?). He’s gone from having to set timers five minutes apart for each medication (in the very beginning he sometimes had six to take at one time, which meant medications took such a long time), from having him work himself up and then back down before he was even willing to take his medications, and from gagging on each one – to now simply swallowing them with a bit of water.

Amazing.

As for where we are at in his treatment, Ezra just finished his third dose of doxorubicin. This is a new chemo for him, and one that comes with a few more side effects. So far, Ezra has gotten away with very little nausea. His hair, which had just started to grow back, was expected to fall out. It has rubbed off in the back (moms will know the spot. The same spot a baby’s hair rubs off when they are newborns), but has mostly remained on his head. In fact it’s even grown more over the last couple of weeks. His eyebrows have not faired so well though. They are probably 75 per cent gone right now and could probably disappear completely over the next week or two.

Doxorubicin also brings with it a risk to Ezra’s heart. He had an echocardiogram done before we started this cycle and he will have several more over the course of his treatment.

At the beginning of this cycle Ezra did have a very minor cough and runny nose. It was however enough to make his oncologist decide to postpone a lumbar puncture by one week. Not a huge deal treatment wise, but it really opened my eyes again to how much of an annoyance a small cold is when it comes to Ezra’s treatment.

We were able to travel home last week for five days. The boys loved being together. My favourite memories from the week include listening to the older two laugh over a joke and then hearing Elliott join in with his own loud laughter. Elliott likely had no clue what they were laughing at, but he wasn’t about to be left out of the fun.

We will stay in Edmonton now until the end of this cycle despite Ezra not having any chemo scheduled for the next two weeks. He is expected to be very neutropenic again during these next two weeks and we can’t risk him picking up any viral symptoms from Elliott (who appears to be a magnetic for everything and anything going around daycare).

This means Cody is solo at home once again. If you are local to us and have some time to make him a dairy-free meal, I know he would appreciate it.

This is Ezra’s last cycle where he and I will need to stay in Edmonton full-time. So, while the separation of our family is hard, and we continue to appreciate all of your prayers, I am feeling good about having an end in sight.

Depending on his neutrophil levels, that end will be somewhere around the end of April. Then, once he is in the maintenance phase of his treatment we will still need to travel to the city once a month for about a week at a time, but that means the remaining three weeks will be at home. And that feels good.