As tough as can be

More often than not we, as a family and individually are commended for our strength. And, I guarantee we all appreciate the support and kind words. Thank you. 

But, I cannot let that be the end of the story. So, let me set the record straight.

Strength does not mean that we make all the right decisions. It doesn't mean that we face every challenge with grace, dignity and peace. It does not mean that we consistently "teach" cancer a lesson, sometimes cancer reminds us of its control. 

Strength means falling apart, but knowing that you're gonna stand back up...maybe in an hour, maybe in a couple days. Strength is not found alone, but with the support and love of others (some who have walked so many steps by our sides and others we randomly come across while living life). 

Everett was a good example of this real strength yesterday at clinic. He has been doing amazing at allowing the nurses to access his port (an uncomfortable process in which a good sized needle is poked into a spongy circle under his skin that then delivers chemo and other meds throughout his body. It's also where they take blood samples). 

So, Everett has been sitting in a chair all by himself the past 2 or 3 visits to get accessed. This is very commendable for a 3 year old to be able to do. It wasn't without squirms and telling us that he didn't want to do it, but he did it and he didn't need us to hold him (or hold him down, ugh). 

But, yesterday, we did have to hold him down. He just didn't want to do it on any level. And, after he was accessed, he was sad. He showed his sorrow and he showed his need and desire for love.

But, he went on...he had a spinal tap to get through. That part was easier for him and he made a comment that his doc dresses up as a banana to give him meds. 

He recouped from the sadness that a challenge such as this brings and with some love, he kept going and he laughed when he could. That is strength.

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We are often mislead, not because we don't seek the truth, but because the truth isn't shared. That helps no one. I want to learn from others and I want others to learn from us. There are so many great byproducts when we open up and share.

Another month gone

Our last clinic visit was July 29. It went well, his ANC was within the appropriate range and all the blood and liver results were good. We went as a complete family and it was all in all a pretty good day. Ev was sick that morning and we still weren't sure why. His doc noticed from his blood work that allergies must be bothering him, so we left thinking and hoping that adding allergy medicine to his daily dose of meds would help him feel less tired and that he would not wake up ill. 

Though I think the allergy medicine helped, it did not take the extra sick days away. I guess we have to assume that he is feeling more side effects from the chemo meds and that this is one of them. Thank God for Zofran and other drugs that off set.

The day after the clinic visit was horrible. Ev felt sick and was inconsolable. I was told by someone who had recently gone through chemo herself that she had days that all she wanted was to be held, yet couldn't stand to be touched. It creaks my heart to hear a grown woman say that and then to think that a child still learning how to deal with emotions is probably feeling the same way.

So, for close to a week life really sucked. It's not that there are no glimpses of joy or that laughter is never heard within our walls...but the challenges out weigh all else. The steroid he is on had very little effect on him at first, then over time, it has started to change his mood. Everett has "roid rage". I think the last time we consistently dealt with that was around christmas time. 

Usually, the bad moods and bad days come and go, but this drug had the upper hand this past round. We will see what comes in a couple weeks (coffee and beer for me...a padded room and plenty of mac and cheese for Ev).

I find that as time goes on, I am more hopeful and proud of how far we've come through this without as many dents and scratches that we could have had. I mean this metaphorically and literally. 

In a couple months we will be close to being half way though his treatment and that's a great feeling.