Home Sweet Home

Ezra was finally released from the hospital today. He really does so much better at home, but I have to think any child would. He was busy playing, smiling, running, and being very somewhat difficult.

He looks a little paler than usual, which is hard to believe, I know. He will be treated another ten days on antibiotics for the ear infection. They have also changed his oral chemo dosing. He was on 100% chemo dosing, but they lowered it to 50%, they don’t want his counts to bottom out again, they will check his counts soon and hopefully slowly increase the chemo back up to 100%. His oncology team said it is typical for kids to bottom out in maintenance when he did. His ear infection didn’t help his counts either.

It all still seems a little surreal at times, like when I read back what I just wrote and words pop out at me like oncology team, counts, and chemo. It all became a part of our reality so quickly. I am not going to lie, our lives had started to seem some what normal lately. This last hospital visit very rudely reminded me how far from normal our lives truly are. I don’t know that our lives will ever really be normal again. And you know what? I am ok with that, if you know me at all, I am not very good at normal….

We are so glad to be back home! Thank you for all the thoughts and prayers.

Way To Go Sweet Boy!!!

Tomorrow Ezra will start the long term maintenance phase of his chemotherapy. When we first got the leukemia diagnosis it was so hard to envision ourselves getting to this point. Don’t get me wrong, long term maintenance isn’t going to be all rainbows and unicorns.

For the next 2.5 years he will receive chemo every day in the form of a pill, steroids 5 days a month, spinal taps every 12 weeks, and Vincristine once a month. We won’t be up at the clinic nearly as much, but the harsh reality won’t fade, with the daily chemo pill reminder.

Words really can’t express what Ezra has taught me in the last 6 months. He is the bravest person I know, and he is 2. I am honored to be his mother, and I would say I was proud of him, but that wouldn’t do it justice. It is beyond pride. So instead I will leave you with a little video I have made with clips from the last few months.

I apologize, the quality isn’t the best, it was taken with my point and shoot. But you will get the gist of it, and maybe you will see what makes him so special too.

I love you sweet boy, keep kicking cancer’s ass!!!

Week Delay

Ezra did not make counts yesterday, his ANC was 450. So we go back next week to retest his blood, and hopefully at that point he will be able to start long term maintenance.