Update

I have been awful at updating this blog! My apologies, I guess it is a good thing though since it means there isn’t much to tell.
Ezra went to clinic today, he is now on his 3rd cycle of maintenance. Ezra has had a pretty high ANC the last couple of times we went in. At his last appt. there was talk of increasing his chemo to 125% dosage.
But of course that all changed today when we got back his counts and his ANC was 237! He was at 1700 last Monday, just to give you an idea of how quickly it can change.
He received his chemo today in clinic and will still get his spinal tap tomorrow, but is off of his oral chemo until his counts go back up to at least 750. When he resumes his chemo he only be getting 50% dosage so they can make sure his counts don’t crash again. Its been quite sometime since he has been netropenic!
He has been handling his chemo like a champ, has little to no side effects from it so far.
In other news, sweet boy turned 3 over the weekend. We had an awesome party with friends and family.
Here is a video I made for Ezra for his birthday, I forgot to post it here too.

Heavy Heart

I wanted to post about all the things I am so grateful for, and all that I have learned this last year. But the truth is, my heart is heavy.

One year ago today I stood in the deli section of our grocery store and listened as a Dr. told me over the phone that my son needed to be seen by a pediatric oncologist. Purely precautionary, he said.

One year ago today, my family walked away from our grocery filled shopping cart, and walked into what has forever changed our familial landscape as we knew it….

And so these last few weeks have been flooded with the raw memories of all that we have been through this last year. I have found myself crying, on more than one occasion.

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This morning while watching Ezra play, I found me eyes welling with tears. He came and sat on my lap and asked, Mama crying? I told him yes, but Mama is happy. And then he caught my tears in his chubby palms as they fell down my face. Got it! he exclaimed as he caught a fresh tear and giggled.

365 calendar days may have passed in this epic story, but not a thing has changed about my sweet boy. He is still the same lighthearted, boisterous, sweet old soul that he has always been.

While I would like to say Ezra’s cancer hasn’t changed me either, it has and in ways I never thought possible.

I treasure every day a little more.

I listen to my intuition.

I believe in myself.

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I can’t wait until we are on the other side of this story, when leukemia is a part of our past. When Ezra is a grown man with a son of his own. I can’t wait to tell his children what an amazing person he is, and always has been…..

Keep fighting the good fight, sweet boy.

And know that Mama will never stop fighting for you.

You boys are my everything.

I love you.

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.