What a Week!

There are many things to write about Nana's visit.  All will be done in time.  This past week, however, was a little challenging but turned out to be inspiring.

The steroid pulse had its usual stuff...plus severe back pain in Sammy's lower back.  Each cycle we get a new development...what fun!  This week was very intense as far as crying from anger/frustration/pain goes, and we resorted to the Codine several times.  Sam has to feel very bad before he'll take anything.

Basically, the pain and crying continued into the following Thursday.  This is not not usual as, by Tuesday, Sammy generally starts to feel better.  Thankfully he did have his kidney ultrasound scheduled on Thursday which put my mind at ease.  Everything came back okay.  One kidney is slightly larger than the other, but nothing is amiss.

So it has been officially decided by the doctors that Sammy is being affected by the steroids and other chemo meds in a slightly stranger way than they are used to seeing, but it is all good in that it means the meds are working and our goal is closer to being reached.  How do you tell a young child that?

I didn't have to!  Sammy had an amazing discussion with me about the whole thing.  He began by explaining to me that the bad pain was a sign that the steroids were the 'good guys' because they were kicking the cancers butt.  He understood that he needed to grin and bear the last few cycles, and seemed determined to let the whole thing play out.  He talked in story format terms:  the good guys were the chemo meds, the bad guys were the cancer blasts.  The setting was his body and the main problem was the fact the blasts wanted to take over his blood and leave no room for the heathy cells..the other good guys.  The solution was to keep taking his meds and deal with the pain as it was okay pain....he didn't like it but he knows WHY he has it.  Boy, was I listening to this with pride and wonderment!

So Sammy has turned the whole thing around and created a battleground inside his body where, basically, a video game is going on.  He has learned to handle this in his own, unique way, and has accepted things on his terms.  I have gained strength from this; I have a much more positive attitude than I have had of late...fearing the toll on Sammy was unfair and not what I had in mind for my lovely child (well it still isn't, but I am not looking at it the same way).

Sammy has taught me to be thankful for where we are now.  I should have always been thankful...I actually was at the beginning of the journey...but stress took a hold of me and did some funky stuff!  The nurse at clinic this Thursday was really impressed by Sam's blood counts.  All the doctors are too on a regular basis.  THIS shows he is doing very well as far as treatment goes.  I an SO VERY grateful I am in this place, and I know Sammy shows no signs of losing.

Next time I see Sam limp, cry, or struggle with his hands, I am going to try to reflect on his story:  the good guys are beating up the bad guys and the setting (his body) gets a little battered in the process...but the good guys are winning and the setting will be okay.  Sammy sees a video game....I see a hero.

Control Toxicity in Treatment

We are entering a strange new phase in Sam's treatment.  With all fingers crossed, I can say his treatment is going very well and shows all the signs of being successful,  I am so happy that I am able to positively look towards the future again, in terms of having Sammy with us.  I will not allow myself to relax totally,  incase I jinx the whole thing...I am like that.  

We now needs to make sure the toxicity from the chemo does not impact Sam's future.  His recent results from the neurological test and the impending kidney tests show that toxic chemicals have hurt his body...the price we pay for keeping him alive..so I have to accept them.  Yesterday, in clinic, Dr. L actually reduced the Vincristine to try to help Sam feel less pain and neuropathy.  It may be increased again...don't forget, the main idea is to keep him alive so neuropathy may be a price Sam has to pay.  

I have heard that there are ways to control the neuropathy through diet and exercise.  This is my focus now.  I want to learn all I can about the nutrition and exercise that will give Sam the best chance to run with his friends again. 

Oh, BTW -it is week one - steroids..yeay!!!  Roll on November :)

Summer Kicks In

So, despite the exhaustion, we have begun summer and the good days have been good.  Just before Nana arrived, I took the boys to the Big Apple Circus.  As soon as the circus arrived in town, I was delighted that both Jack and Sam wanted to go.  Being unable to get my act together, I missed the special offer on cheaper tickets, but did still get great near ring-side seats.  We had a blast and the boys declared it was even better than last year!  Sammy still does a great impression of one of the clowns - remarkably good and very accurate...what a memory!

Once Nana arrived, we spent a couple of days letting her get over the journey.  With Lupus and other such ailments, the journey tends to take it out of her.  The kids were ecstatic to see her again; they miss her so much as we only get to see her once a year.  

Our first big day trip was to Philipsburg Manor in Sleepy Hollow.  It is a working manor house and a place we visit every year.  We were greeted by a lovely lady in 18th century costume who escorted us around and informed us of various historical significances as we went.  Sam and Jack were in fine form with their questions...mostly relevant and showing genuine interest in the history around them.  Norman the cow was a hit, as was the tour of the manor house and the working mill.  My kids never cease to amaze me: if I had told them we were off to learn about colonial history, they would not have even got into the car, but they soaked it all up and loved every minute of it...Sammy raising his hand to ask questions was just delicious!   

Exhaustion!

The beginning of summer should be a time when I galvanize and get activities rolling.  Usually, when my mum comes to visit, we set about on all kinds of adventures with the boys; trips to parks, beaches, zoos, and other places the kids love.  Well, it is now most of the way through the first week of her stay and we have not been anywhere except for a quick bite at a local restaurant.

Exhaustion has been plaguing me for several months.  It has crept into every fiber of my body and refuses to leave.  I force myself to do the things that HAVE to be done...mostly, and then sit with a feeling of guilt when the other stuff piles up and gets ignored.  I don't want to be like this.  I want to be happy, energetic, motivated - back to me!

But I know I am not alone in the cancer parent exhaustion mode.  CPEM is part of the reaction to months/years of adrenaline pumping fear and anxiety: life or death of child, managing to pay bills, keeping the house, staying at work or quitting to be with sick child, making sure siblings are not left in the lurch, wondering why hair falls out when it no longer should, tests, tests, tests, results which stink, anger, frustration, hurt, fear, uselessness, sadness....the understanding that 'cure' does not really mean Sammy will be cured!

I have reached a point where I go through the motions...or not!  I crave other worlds...fantasy worlds which have nothing to do with cancer or pain or heartache.  I found the energy to take myself off to two Eddie Vedder shows in one week, actually staying up all night after one and working the next day.  I have danced for two hours straight, several nights a week, rehearsing for a stage performance...both felt great...they were my escape. But back in my reality, I have no energy, I get fevers constantly, I cannot find the motivation to do any more than I really have to.

My goodness, I have put the last load of laundry through the wash about five times now... I just keep forgetting it is there and have to redo it.  When one of the boys is naked, I will be forced to make a move and get onto it.

I have just looked back at photos of Nana's visit last year.  Sammy was very sick, but we still did a lot.  Will I get the energy to push myself to do that this year?  I don't really know.  I know I SHOULD....for the boy's sake....but I am scared that I don't have it in me.

Sammy is at the clinic now.  We were all up at the usual 5:30am and I decided not to go back to bed or I would never get up again.  My latest fever is abating and I actually hope I can move myself to take the dog for an early morning stroll.  The laundry is still calling but I can't face that yet.

CPEM  - the cancer parent's response to stress!  The result of having no respite from the reality of a child with cancer.  I hope I get to blog all the things we get up to this summer....I won't be as 'there' mentally as I would like to be....but if I can fake it and be there physically, it will be an accomplishment.

As usual, I want to try to do something about the situation.  Dance is over, Eddie Vedder is across the other side of the country, fantasy land is not as easy to get into right now.  I do know that for me to be there for my children, my wonderful boys, I need to take some time for me.  Ten percent of the week needs to go to me time.  Then I hope I will be more able to be there for the boys the other ninety percent.  (Brian is included in 'the boys'.)  So....I'm off to try some Kickboxing!

Chef Sammy

Sammy has always loved his food.  When admitted into hospital, he actually starved himself as he couldn't face food, but that is not the usual order of business.  In fact, right now, Sam is  asking me for a snack even though he knows we are about to hit the town for a bite to eat with Nana.  Sammy's favorite food is hibachi, but he will happily settle for other dishes; pizza, pasta, chinese, chicken fingers, and all sundry of fruits....just not so many veggies.

A winning birthday gift was a kids cookbook.  Sam has read it from cover to cover and we have a plan....no, he has a plan.  We are going to work our way through every recipe and try a whole host of new foods!  I am very happy to see his interest in culinary diversification.

Sam's first dish was giant pigs in blankets.  Not the healthiest start, but we both had fun and Sam is a strict task-master when it comes to following the directions to a T....something I need in the kitchen as I'm more a 'wing it' kind of gal!

The result was delicious!  Both Jack and Sam enjoyed the meal...corn and salad were added as sides.  Best of all, Sammy knows what he wants to do when he grow up: be a doctor in the daytime and hibachi chef at night!!!!

Electromyography (EMG)

The results from the MRI were good.  No visible damage to the spine - phew!

The next test for Sammy was the EMG (Electromyography, or EMG, involves testing the electrical activity of muscles. Often, EMG testing is performed with another test that measures the conducting function of nerves. This is called a nerve conduction study.)

Sammy was amazing as ever.  The doctor was very gentle with him and proceeded to look at muscle strength and his ability to walk, grip etc.  The "claw" of his fingers was noted (Sam cannot straighten his fingers and they are permanently set in a claw-like shape), and his strange gait was noted. Then it came time for the electric shocks. 

Sam became very angry that the doctor did not wait for him to ask the questions he had about the test.  He was experiencing pain from the shocks, but his gripe was more that fact he had not been allowed to talk about what was going on.  He kept asking, "Why don't doctors ever let me ask them about things, I need to speak before you do this..."  Mummy instinct told me he was right, but at the same time, the test was almost over and I didn't want the pain prolonged.  I tried to explain this to my very determined and angry young man, but he was too upset about being ignored himself.  Once the test was over, Sam sat in my arms, disgruntled, but willing to forgive.  

Unfortunately the news wasn't as good as I had hoped.  The chemo has caused muscle and nerve damage which will be a long-term issue for Sammy.  He may return to his former self, but it will probably  take years.  He will need therapy for a long time and then his walk and grip may not return to normal.  

Sammy's wish is to be able to run with his friends in the playground.  I now have a new mission...to help grant that wish for him!