Tuesday, March 23, 2010

Hating Cancer

At bedtime tonight my little boy opened up in a big way.  We were snuggled up for cuddle time and he stated quite categorically, "I hate having cancer, it has changed my life so much and I want my old life back!"  Sam has said this before, but tonight he went into more detail. 

His life is different in so many ways that bother him.  He wishes he could go to school:  this broke my heart as he tried to go today and had such a bad panic attack, Poppa had to take him home.  Sam also wants to be able to do all the things he used to do with his healthy, strong body: ride his bike, play golf, swim, and have playdates.

Sam was also expressive about how sorry he feels that the whole family suffers with his cancer.  He heard Jack open up about his frustrations with seeing Sam get so many toys and replied, "But Jack, it's because I have to have all the procedures and yucky things."  Jack wasn't convinced.

We spoke about how things will begin to get easier; how we will try to start school properly after the vacation, and how his body will begin to get stronger as he feels more able to begin to get around more. We even talked about his birthday (mainly the food he will eat) and the possibility of us beginning swimming soon.  Sam even said he wanted to dive but felt a little too afraid right now.

I marveled tonight at how expressive Sam was with his feelings. (I am hoping the Zoloft takes a positive effect and is not the cause of this sadness).  Strangely my heart did not break upon hearing these words, in fact I felt relieved he was opening up more.  I was able to tell him about things we will do and how, although treatment will last for a couple more years, he should feel a lot better as time goes on.   Of course, as I type, I feel myself crossing my fingers that I am right...but I think I am.

Monday, March 22, 2010

Thankful Yet Again

So week eighteen crept up on us by surprise.  We have done so much 'cycling' it seems we are loosing count of the weeks.  Week eighteen is when the next scheduled lumbar puncture (LP) happened.  Sam received several monstrous chemos intrathecally...thankfully he was put to sleep again, and then began day one of his regular cycle. 

Day one began on Friday this time due to power outages from major storms and parent-teacher conferences all mushed into one joyful week!!!   We were very lucky to be rescued from the blackout by Nana and Poppa's friends, Sue and Marty.  They provided a very comfortable night for Sam, Jack and I while Brian stayed at home to look after the animals.  I was so relieved to be showered and presentable as I spoke to parents, although I secretly wished we could get the LP and day one over and done with on the normal Thursday visit. 

Friday came and Brian took Sam in.  All went well with the finger prick, and Leslie the psychologist was there to support him.  She had to leave just as he was going in to be put under (typical but totally not her fault) and Talia from Child Life took over whom Sam loves to see.  Sam had a whole support team around him as well as his daddy.  I have to admit I do love how well Sam and Leslie have got on.  She has given him so much strength. 

Sam apparently got the jitters just as he was going to sleep as it had been so long since the last time.  He was soothed and the LP went well.  Brian reported everything virtually in real time as I was working but glued to my text messages on my Blackberry.  I am usually very nicely distracted by work and enjoy being there, but that day was different and I was aching to be the one with Sam. 

Once home, Sam settled into the first week lethargy with a vengeance.  He kept commenting on the fact that he was much more tired than usual.  He even slept in on Saturday until woken up at midday!  He has NEVER done that.  We checked in via email with Dr. Cole and he reassured us it was the new addition of the Zoloft.  We are giving it a couple of weeks to see what effects it has and will keep our fingers crossed it calms him without knocking him out.  To be honest, today (Monday) he has been a little more active and (dare I say) the pains have not been as bad.  The steroids are working their number on the eating demands...my goodness that is such and issue...but things are not as bad as I dreaded with the extra chemo pumped directly into his spinal fluid!  The good news (I think) is that, due to the recent and frequent low counts, the dose of the Mercaptopurine has been lowered to 80%.  Hopefully his counts will stabilize a little. 

So we have had quite a week and Sam has been through yet another procedure.  But I am VERY thankful for so much today.  We have had so much help with the blackout, the hospitalization the previous week and the day to day management of working and looking after Sam.  The grandparents are amazing (all three of them) in how they have made our lives bearable.  Our friends have supported us and kept our heads above water at work and at home.  There are even churches and a group of secondary school students in the Bronx praying for him and sending their love each day, (not to mention huge bags of presents for both boys at Christmas and Easter baskets too).    Most of all, I am so very grateful that Sammy's LP showed that he is still in remission...the chemo is working and my Sammy is doing so well.

Saturday, March 13, 2010

Exactly Six Months from Diagnosis

We evolve, we change, we fall apart, and then we get used to things.  As we go through life, we adapt and somehow survive or thrive ( I won't go to the other option).  I am noticing a change in me.  I am not sure it is thriving, surviving, or just being too wiped out to be motivated, but I have been blogging a lot less.

Let me explain why this is a big deal to me.  Pouring out my thoughts and feeling on this blog was a survival thing; I could be sitting next to Sammy in hospital, wondering if he would make it through highly toxic intrathecal chemo and feel a release by writing down my thoughts.  I would feel helpless and desperate, overjoyed or relieved, and blogging helped me work though the emotions and pain. 

Believe it or not, Sam has just spent another week in the hospital!  He went in last Thursday with a high fever having had one of the worst first cycle weeks ever.  He was in great pain, could not eat due to lesions in his mouth, and was generally very sick.  Then we spent a week in the hospital, preceded by hours in the ER, hooked up to an IV providing antibiotics.  Sam's counts had dropped so low so quickly, he was even taken off all chemo AND his regular antibiotics for the rest of the cycle.  Yet I did not blog!!!

I put my lack of communication down to a variety of factors.  Sure, my emotions were running just as high but they felt more familiar...repetitive...did I really want to relieve them AGAIN for the sake of writing them down?  That wasn't why I blogged, I used it as a release...I didn't feel it would serve that purpose now.   There was also the fact that, for the first time ever, Brian and I had to go to work through the hospital stay, so we were alternating sleeping at the hospital, going to work, and going home to recharge/take care of the home front.   There was a craziness to every day and night...no respite, no energy.  Blogging was not a priority. 

Finally there was the fact that I was feeling very guilty.  Strangely, I had forgotten so much about Sam's treatment; his roadmap both ahead and behind.  Had I become apathetic to the whole thing and stopped checking up on every minute detail and obsessing about where he was and what was to come?  Obviously, I should have been more careful, as I was very surprised to learn he faces his next LP (lumbar puncture) next week!  Wow!  A few weeks ago I would have been on top of that.  Perhaps I was focusing too much on the report cards I had to do? 

Needless to say, I am at a different point in the journey.  I am mourning the loss of my 'old Sam' and still dread week one of each cycle, especially as they are getting worse due to the chemo accumulating in the body.  I am now driven to ensuring Sam receives PT and sees a psychologist to help him through this; we are working with his teacher to have him evaluated etc.  Life is too busy to have the luxury of letting my angst out to the world.  We have to keep on living and going through the mundane necessities of life and tend to "just deal" with the blows leukemia throws us.  Is this a positive development?  I am not sure.  Oh, and we close on a house on May 6th...just to add an extra aspect of stress to our lives...trust us!


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