I Cried Today

I don't know what makes a day one of those days, but today was a humdinger of a day.  Last night I was so tired...you know, that tired to the bone, desperate for sleep kind of tired that makes you grumpy and a little high-strung.  Who am I kidding?   I've felt like that for months....it's part of the journey I'm on with my family and dear old cancer!

Anyway, I digress.  So last night, tired beyond reason, I sat in the kitchen comforting my amazingly strong son who had just HAD ENOUGH:  Sam is sick and tired of the treatment, fed up with not being 'normal'.  He says he is not a 'normal kid'.  He says he wants to be able to play and chase his friends at recess.  He says he wishes he had never had cancer, as it is too much now.

I validated everything, no sugar-coating, just plain agreeing with him.  It sucks, stinks, feels like crap, blah, blah, blah.  (My words, not his...."Cancer is stupid" is Sam's release....my real release words would make this blog R rated!  We are getting closer to the end of treatment, but tell a kid he has at least five more months to go and it doesn't register the same way it does to all our well-wishers.  It still seems like forever, and so much of his life has revolved around not being normal (his words).

Sam also showed how much things are getting to him when Leslie, his psychologist, had the session with him in the clinic.  Playing doctor often helps in a therapeutic way.  Sam has a monkey he looks after and often works on 'teaching' the monkey how to cope with the treatments he gets from Sam.  This visit was remarkably different: instead of helping the monkey feel better, Sam stuck the needle in the monkey's eyes, nose, ears...basically anywhere it would hurt, and with no plan to calm the monkey before treatment.

So, back to today:  I drove to school with the sunglasses hiding my tears, blamed allergies as kind colleagues checked in with me, and sucked it up and gave it my all once the students were in the classroom.  Only those closest to me knew what was going on.

This is a crying day....I have them....I will continue to have them spring up and surprise me for many years to come, I'm sure.  I hope Sammy does not continue to have them once treatment is over, and I won't let him know if I do.

Why share this?  'Cos I'm a sap!   No, it's because the people reading this who are in my shoes will relate and understand, they might feel better about their own crying days, they might give themselves a break and let it go...it happens.  I still feel like crying, the day is not yet over.  Tomorrow, however, is another day.

You Can Tell Things Are Getting Better When....

We still have a long road ahead...the rest of Sammy's life, in fact.  But I am beginning to see that each stage has it's pros and cons.  The earlier stages were, obviously, more immediately harrowing.  Read the earlier posts to see details.

Now we are in the maintenance phase, there is a more 'normal' pattern to our lives.  Three week cycles provide us with the stability of knowing when Sammy is going to grow steroid 'devil horns', when he will have the Vincristine pain, and when we can plan something fun as he will be okay.

What I have noticed lately is a mixed blessing.  Sammy is really becoming aware of his inability to do things.  I mentioned this before in the post Questions From A Six Year Old.

A couple of days ago, I watched Sam 'run' around the playground with his friends....last as usual, with the limp and gait which sets him apart from the others.  We stayed at school late that same night to watch the annual talent show...great fun.  I also met the father of one of my former students.  He survived cancer twenty years ago and is now a big player at the Leukemia and Lymphoma Society.  He and Sammy exchanged port stories...Mr. M had his on the same side, but his was external, Sammy had the Port-a-cath....buried under the skin.   Connection made, stories shared, offer of help if ever needed gratefully accepted.  We headed home.

But at the end of the day, Sam was sad and melancholy.  He was upset but didn't really know why.  As usual, we did our little talk and out it all came:

Sam is sick of being the one everyone knows as having cancer.  He is sick of not being able to run, and he is sick of having a port!  The last one really surprised me for some reason.  Then Sam explained that he just wanted to be back to 'normal'.  No amount of telling him "he is 'normal', he just has some extra things to deal with," helped...duh!  But I had to try.

This time, however, I did not have the heartbreak I had previously during one of these discussions.  I was beginning to realize that, as Sammy was getting upset at his lot, it was because he was feeling so much better, healthier, able to get on with life!

So, you know things are getting better when...Sammy is ready to take on the world as a non-cancer kid!

Camp!

Sammy bounced back nicely from five horrendous steroid days.  He is at camp as I type...at his own request...playing sports, swimming, watching movies and generally being a kid!  I am so happy camp is possible this week.  We have also signed him up for swimming lessons every Saturday.  We are going for normal while we can.

So the camp is at the Italian Center and is, in no way shape or form,  a special camp for kids with cancer.  My mummy radar is up at all times, checking for the vibe that tells me to break land-spead records to get to the IC to rescue my chid from some major catastrophe such as a foam ball to the head!

I am also beaming with pride that my little man has continued to be so independent and confident.  His brother is not doing the camp with him due to a high fever and some kind of yucky virus.  See Jack's own blog for details.

Independence has always been a strength of Sammy's.  Being restricted in so many ways must have driven him crazy over the past year and a half.  We are open to giving him as many opportunities as we can to continue being 'normal' and enjoying new experiences.  I WILL swallow my angst and deal with it...what's the worst that can happen?  And kids do get bumps and scrapes...it's part of being a kid so why deprive Sammy of these rites of passage?

Yesterday, Sammy returned home rather achy and tired but happy.  He had made 'friends'...he was not willing to actually ask them their  names, but hey, at least he got to interact with kids!  He also really wanted to be signed up again for today,  so we did...I think/hope we are seeing the beginning of a more sporty Sammy emerge!

I do not know what today will bring...Sammy was very stiff this morning but happy and eager to get to camp.  As I waved goodbye, he was in the midst of a group game of dodgeball....oh yay!  and having a blast.

This is a big development for us as a family.