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.