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 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.

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