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!

Strength

Good day at the clinic because Sam was not screaming about eating...it is the steroids...I can't wait until they are done. Radiation was quick, the anesthesiologist was anxious to get back into the room so I assume there was a moment of Sam not breathing, but all was well (I'm calm about it as not breathing is a minor bump these days)!!! At home Sam asked for a nap and was very shaky...radiation is taking its toll. Vincristine is also causing major weakness and pain...but Sam is really handling it well. He did start singing along to a song, "I hate being sick"...and cried a little in bed with me. I think Sam, Brian and I take it in turns to loose it...really! One of us cries and the other two are amazingly strong...lucky :)

Tomorrow Brian will take Sam to the clinic for blood work, and then he goes for radiation and the LP. Sam is terrified of having the port taken out. I told him I would put the numbing cream over the accessed port so he doesn't feel it as much. I am not sure he is fully convinced, but it might work.

Sam has talked a great deal about the length of his illness. He now understands that his port will be in for about two years..."I'll be seven when it comes out!" He is getting a little exasperated about having to go to the clinic so much, he has been every day this week and will do the same next week. Thankfully he is a very clever little guy and tells the nurses and doctors, Dr. Singer (the head of the ICU) included, that he is feeling so bad because of the medicine, not the leukemia, as he doesn't have that anymore.

Sam talks in terms of months and years now. "Will I be able to have my birthday out of the hospital?" or "Can I play golf again?" or "Will I still have to visit the clinic next year and if so, how can I go to Florida?" The hardest is,"If I don't have leukemia anymore, why do I have to keep taking the medicine?" Tonight I finally told him it was to make sure the cancer doesn't come back. He took it calmly, with acceptance. He is the strongest person I have ever met.