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.

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!

A Different Kind of Snow Day

We always take a day at a time, it really is the only way to get through this ordeal.  We were blessed with over a week of energy, happiness and even three days in school!  We consider those days the start of what might become.   Day One of Cycle Five put an end to those days, at least for the time being.  Blizzard alert meant that Sam went to the clinic on Wednesday afternoon, after his Hundred Day celebration.  He had to be accessed and had his doses of all the usual toxic goodies that are keeping the cancer at bay.  The accumulation of these medicines seem to be causing some very unfortunate side effects.

Jack had recently moved back into his own bed. Sam had, after all, been doing so well.   We tucked the boys in bed and I sang the songs which have recently become a ritual again (how I missed that as they refused to let me sing to them for over a year).  "Two Little Boys" and "Lullaby" later, Brian and I settled down to our evening chores followed by some TV to relax.  Then Sammy came down.

Looking like a ghost with red rings around his eyes, wobbly and shaking like a leaf, we lay him down on the couch and promptly took is temperature...no fever...phew!  Then the vomiting began.  My poor child  was so sick he ended up dry-heaving through the night.  Jack was moved back to our bed, I 'slept' in Jacks bed next to Sam and literally stayed awake the whole time to prevent Sam from choking on the bile that kept flooding his mouth.  My heart was breaking each time he uttered the words, "When is this going to stop?"  We also had diarrhea and I must have changed bedsheets and PJ's several times.  The next morning, Poppa came up early so we could get to work...no more sick days for us....and we begrudgingly left our son to try to focus on teaching for the day.  Poppa reported that Sam slept all day and ate absolutely nothing!

The evening was miserable and the night  a blur, but the vomiting had stopped, only visits to the bathroom for the yucky stuff.  But, a white blanket impeded our ability to drive..Yippeee...SNOW DAY!  We knew this one was not going to be like the first: we were not going to have some fun family times together.  Instead we were blessed with a day to look after our lovely Sammy.  Jack and I did fit in some Chess time together, and he even got to play outside with a local friend.  But most importantly, Sammy had his family with him as he got through the day with such pain, he felt "old".  He could not move, but he had Mummy sitting next to him, he could not play, but he had Daddy keeping him company.  The snow day was another gift after all. 

School Fun

Sam enjoyed three days of fun at school.  He took part in most of the activities and was generally upbeat and happy.  There was a major meltdown moment when he went in on Tuesday to discover Mrs. P was out and there was a substitute. Well, he cried and fussed and I literally asked the sub to hold onto him as I left, believing that the best way to get into the swing of things was for 'Mummy' to leave as if things were normal. Thankfully Mrs. M, the kindergarten teacher in the next room, was on hand, and several other teachers stepped in to help Sam calm down and feel safe.  The rest of the day went well.  

Wednesday was the official Kindergarten 100th Day of School celebration.  I felt so elated that Sammy was there...it had seemed so impossible for so long.  I have included some pictures of the various activities he took part in.  He did need me to be there throughout and, due to my need to get back to my class (being paid to do a job as a teacher and all), I called Brian to take over giving support.  We have to remember it is like the first day of Kindergarten all over again for him...everything is so new and the routines are not yet learned or even understood.  I am so proud of my young man; he has to work out so much as everyone else takes for granted what is expected at this time of year.  He has a strength of character that I admire so greatly, and feel will make him an amazing person in the future.

Snow Day

It is now Thursday, just over a week after the day I will cherish for many years to come....a SNOW DAY!  Yep, we finally got a blizzard and our school district actually closed.  It was not the day off that was so special, but the quality of the time we spent as a family. 

Sam had felt quite rough after the beginning doses of cycle four.  He had been sleeping a lot and had the usual pains in his legs and the newer reflux causing problems.  However, he had also been told to 'get moving' by Heather (nurse practitioner at CHAM) and, as a result, had begun walking with Poppa and the dog each day. 

By the Wednesday snow day, usually a day Sammy would still be weak and wobbly and mainly laying on the couch, he was a miracle to behold.  He had energy (for him) and actively took part in games with the family...we played Trouble and tickle Daddy and watched a movie with snuggles and fun instead of passivity.  We shared in jokes and talked and Sammy even became more independent that day.  He blossomed into a being much less fragile than before, more willing to put himself into action and at least have a go at things. 

The day was not just about the beginning of hope.  Jack reveled a talent for chess...actually beating me the first time we played and I really didn't give an inch!  The family got to be together without any other activity coming in our way...the clinic was even postponed until Friday so we could relax in the evening and not rush off to bed ready for an early start the next morning:)  The day was ours and we all found a renewal of strength and resolve from it. 

Today, it has been over a week with this energy and happiness.  Sure, there is still pain, Sam threw up while taking his chemo, and somethings still require more help than before.  But he walks without the pushchair more often, and we have seen and heard our Sammy again...singing, dancing, "beating up Daddy", and even having a good old argument with Jack (I actually missed that).  At the clinic today, Dr. Cole told us this was more normal but to expect some setbacks at times...sure, I can take "at times" if this is the NORMAL we can hope to expect more often. Sam, with his whole two weeks of Kindergarten for the entire year, is now reading some sight words and has a new hobby....wordsearches!!!!  He blows me away with his determination to be a reader.   I have LOVED this week more than I can ever express, I have seen my Sammy back, my Jack challenging me in a game of strategy, and my family coming together as its old self. 

Cycle 4

Sam started his 4th cycle this Thursday...phew!  I was very worried we would be delayed, and that means prolonging the overall treatment.  The clinic on Thursday was not easy because it was day one, so Sam had to be accessed.  We did the usual finger prick first.  Sam now gets very upset by the squeezing that has to happen to get the blood out once his finger has been pricked.  He finds so much to be terrifying!

We met Nana and Poppa as Sam was being weighed, and then met with Heather, the NP, to go over general check-up type things. Sam still has the cough and cold, but his chest continues to be clear which is good.  Heather told me to get him moving more and ban the stroller!!!  I agree, but can't figure out how I'm going to consistently fight that fight with Sam who is becoming more the invalid each cycle.  I know the exercise will actually help, but the first two weeks are usually painful!  BUT, I'm on a roll now with the discipline and intend to be strong, for his sake, with the exercise. 

Waiting in the general waiting room again Leslie, the psychologist, came for Sam's weekly session.  Nana, Poppa and I immediately got up, told Sam we would be back and loved him, and left them to talk and do their "thing".  We went for coffee.  I was nervous but kept away anyway.  We came back after about 40 minutes as Heather called us to speak with her.  His counts were good..ANC above 2000!  Great, Sam could enjoy Jack's birthday :) Then we got to see the fruits of Sam's time with Leslie...he had built a wonderful collection of things with Legos and proudly revealed them with a spectacular 'da da' as we 'oohed' and 'ahhed' at his great work.  It seems like the pair of them have hit it off.

Discipline

Sometimes it becomes hard to do the right thing as a mummy.  It is especially hard when the child in question is going through cancer treatment.  I did, however, decide to enforce the law today and felt good (although also like crap at the same time) about it.  Sam is not on any chemo or steroids at the moment.  It is his natural
"off" week until Thursday when, fingers crossed, he gets to start the next cycle of poisons, uh, I mean chemo!  Anyway, Sam has been pushing my buttons all week, feeling too weak to do this, too tired to do that, too blah blah blah to do anything actually asked of him.

He did this today as we were trying to go into a house we were visiting briefly.  He cried and huffed and really would have puffed the house down in his temper if he bellowed much more.  I decided it was nothing more than wanting his own way so I removed him from said home but explained in a firm voice how displeased I was with his unacceptable behavior and banned him from his DS (little game playing thingy) for the rest of the evening!   He was mortified but, he seemed to 'get it'.  He cried a little again at home when I reminded him that he must not only do things he wants to do, and has to think of others sometime, then he played and was a happy bunny again...wow!  He didn't crumble into dust and get blown away on the wind like I feared :) 

Lesson learned...when Sam is NOT on steroids and heavy chemo ( pain and suffering are not times I will assert my big heavy mummy hand), he will be expected to behave like a human being and have the usual consequences doled out to his brother.  I feel life will be easier for us eventually (not initially as he gets used to the idea), and it will help Jack feel like he is treated more fairly.  It only took five months since diagnosis for me to work this out...but I'm glad I did.