Friday, March 30, 2012

Immunizations - Gone!

One of the things we were told, way back in the midst of treatment, was that Sammy might have to have some immunizations re-done as chemo for leukemia can wipe them from the system.  Given that my little boy had been hospitalized pretty much for a year with a WBC of zero, we expected him to need quite a few.   Sometimes I am just not a big fan of being right!

During the last visit to the clinic, Sammy had blood drawn to check for antibodies and the need for more immunizations.  Low and behold, we discovered that he actually needs every single one of them done again!  He has no coverage...nada!  There are a few reasons I am 'slightly miffed' about this:

1. My poor son has to endure more pain and fear, as he will have to get shots each visit until they are completed (I refused to have them all done at once).  

2. I have to tell Sammy that celebrating the end of treatment did not actually mean no more yucky stuff!  He is going to be heartbroken and very scared.

3. I am going to re-go though all the angst of  immunization safety:  I agreed to immunize in the first place but was terrified of the MMR.  Ironically, it was just days after the MMR shot that Sammy was in the ER with strange symptoms...okay it turned out to be cancer, not anything caused by the MMR, but I'm still terrified of having to expose him to these drugs again.  

In the grand scheme of things, I am glad we have to re-immunize rather than face relapse, bone-marrow transplants another fight for life etc.  Things could certainly be worse.  But I am still disappointed that our journey continues to have speed-bumps, albeit much smaller than before.  I look forward to a smoother road in the future...sometime.

Tuesday, March 27, 2012

Friday, March 23, 2012

Six Months Post Treatment



Yesterday was Sammy's sixth month post-treatment check-up.  What a difference!  Sammy was showing off the tape he has on his legs from PT which helps him to move his legs properly; the doctors were all marveling at how wonderful he looks sans chipmunk cheeks and with soft, slightly shaggy hair.  All the signs are good...Sammy is still clear of cancer and has no indication of relapse.

We are on monthly visits to CHAM for check-ups and bi-weekly visits on a Tuesday afternoon for  Sam to see his psychologist.  Cancer and chemo almost seem a lifetime away: I see pictures of Sam in his bald, frail and sick condition and feel a bit of a disconnect...did that really happen?  Well, yes it did, and I was surprised at how easily I felt like forgetting it.  So much for my gallant "I will never forget" stance as we ended treatment half a year ago.

My head was forcefully removed from the sand during this past CHAM visit.  It really has been a while since I have been in the actual clinic part of the hospital.  Sam was upset by his blood-draw; having to have a vein in his hand accessed rather than just the finger prick.  He seemed like he had reverted back to the terrified newbie, crying and begging the technician to let him tell her when he was ready.  He was never going to be ready, as we learned over three years ago (wow!) and she stuck him and drew the blood among a flood of tears.  I am ashamed to say I was awful at dealing with idea why. I just couldn't get my act together to help Sammy out.  I almost scowled at him to just let her do it and stop making a fuss.  ME...I did THAT!!!  But I hated myself and ran over to hug him and make him better, still feeling like a fish out of water...and a complete bitch! 

There aren't many blogs about life after childhood cancer.  There is a sucks to remember it.  But once Sam and I had endured a couple of hours in the CHAM clinic, I remembered why it is so important to keep this fight going. 

A little girl, no more than three years old, was skipping along the hallway.  Her head was bald except for a few strands of whispy brown hair.  Her skinny body and sunken eyes indicated that she was in the heart of the treatment.  Her nights would most likely be filled with chemo and pain, possibly vomiting and mouth ulcers. I didn't look at her and want to run over to her parents to tell them Sammy did well and she most likely will too. (This had been my inner response since treatment ended.)  I just wanted to cry with them and acknowledge where they are in their journey. 

As Sammy spoke with his psychologist, who visited rather than have us come back on Tuesday, we heard the screams of children resounding around the room.  Curtains were pulled across to suggest a semblance of privacy; nurses, our friends, shuffling carts filed with syringes and catheters ready to pump toxic chemicals into infants, toddlers, grade-schoolers and young adults.  Parents seemed to either melt into the shadows, quiet desperation on their faces; or hover over every moment, watching avidly to check everything was done as it should be, determination in their eyes. 

Sammy was opening up about his frustrations with not running as fast as his friends, how he felt they were less kind to him now he was just slow and easy to catch in tag.  But as time went on, Sammy began to withdraw too.  He was hearing the screams, watching the activity in the room, probably remembering his own ordeal.  We wrapped up the session early.  I made a mental note never to have him in the back again.  It sounded like a torture chamber in a movie. 

So, watching this from the other side was something I will never be able to fully describe.  Cancer may be in our past, but it is always going to be embedded in our souls.  You see, we know.  We understand.  We shall never forget!  Yesterday I learned how to stop hiding from cancer.  I made a promise to get back on the wagon and be active again in spreading the word.  Cancer can be beaten if enough people work hard enough at it.  I will be reactivating this blog and pushing for more exposure.  Strangely I did not do that as much when I was directly involved...perhaps I was too close to it?  But now I am going to blog and shout all the way to the top of the mountain.

There are still kids suffering indescribable pain due to cancer and the treatments currently available.   There  are still siblings who watch and wait for life to return to them too.  There are parents whose worst nightmares have been realized and there is nothing they can do about it.  Superman Sammy is my hero, now he will help others too!


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