A Cookie & A Cancer Scare

It all started with a pack of mini bear claws and a beautiful crazy haired little girl who was kind enough to share some smuggled cookies with Maxwell while on our play date.
Maxwell sure did enjoy the cookie but by bedtime he was as stinky as a warthog. The night was long and familiar with his crying in his sleep and his tossing and turning, at one point I even had to pick him up off the floor and put him back in his bed.
Morning was tear filled and by 8am the fever hit, the stomach pains continued and by lunch his ears were causing him trouble too.
I called the doctor thinking that perhaps it was an ear infection and I was actually surprised to learn that consuming dairy when deficient can cause swelling of the eustachian tubes resulting in a fluid buildup. Once the lactose was out of his system then his ears would be fine.
Sure enough by the following morning Max was back to his regular self. This little girls mom was ready to clobber her and told me that at our next play date I had permission to "pat her down for contraband" but in reality little wee Miss did me a favor. By exposing Max to a minimal amount of powdered forms of dairy I was able to see what his reaction would be after being totally dairy free for quite a while, clearly there is no amount too small to cause a reaction.
In other news tomorrow Nick and I are heading back to Oncology, the last few weeks I have noticed some old symptoms resurfacing that make me nervous.
Stomach and back aches have returned, nausea and vomiting have started again, he is bruising easily and no matter the amount of food that he consumes the weight just isnt staying on.
I emailed his clinic nurse and within five minutes got a response that just said "we need to see him asap"
I am thinking positively and am confident that the symptoms are late term effects of the chemo and radiation but the first year is when its most likely to have a relapse so we need to get him checked out.
March 15th will be one year to the day of his initial diagnosis so the timing is certainly crappy (as if there is ever a good time to learn about cancer).
This year was supposed to be a year full of nothing but good news and I am hopeful that it will continue to be that.
I am bracing for tomorrow and keeping my fingers crossed that its nothing more then a mom and oncology nurse being paranoid.   
 
To be continued......

Be Someone's Lifeboat

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.  

~Leo Buscaglia

This quote is so simple and so true, it should be common sense and yet quite often its not.
I practice something called random acts of kindness or what some call paying it forward and this is something that I try to teach my children as well.
Whether its paying for the coffee of the person behind me in the drive thru, letting a mom in the restaurant know how well behaved her children are, telling the older woman in the elevator how nice her perfume smells or asking the recent widow next door if she needs anything at the grocery store, these are all things that have the power to make someones day a tiny bit better. 
Random acts of kindness were something that were a huge part of our hospital stays, quilts were made to combat the bone chills that chemo brings and there was always treats in the Ronald McDonald room made from people who know what its like to be hungry but not willing to venture all the way to the cafeteria when your child is so sick.
Even something as simple as sharing the top secret hospital wifi code was much appreciated, the concept is amazing to me.... how could providing a 6 digit code create an instant connection with someone that only seconds before didnt know that another existed.
For years now I have been a part of a forum called Wondermoms. Just a group of moms who chat on line about issues both big and small, its like a virtual coffee date with women who were once strangers.
Many on line forums have issues like jealously, negativity and cliquish behavior but ours seems to be the exception.
We all come from different places both geographically and with our lifestyles, some have many children while others have one, some are married, divorced or single... employed, self employed or staying home to care for their families. No matter our differences we were bonded because of this group. This became clear to me when a fellow wondermom surprised me at the hospital with an ipad and itunes cards right after Nicks diagnosis which many of them had pooled together to purchase.
Although I had only met her once or twice before it didnt stop me from bursting into tears and hugging her as if she was my lifeboat and it didnt stop her from hugging me back.
The material items gave Nick something to do but the gesture gave me something positive to cling to - good things were still happening in the world no matter the gray cloud above us.
From now on take the time to think about how something as simple as holding the door open or saying a kind and genuine word can make someones day a bit better. 
There is always the very good chance that YOU could be someones lifeboat when their waters are a bit rough.


http://www.wonderfamilies.com/forum

From Cancer Patient to Future Dad With A Little Bit Of Help

After Nick was diagnosed with cancer my mind went to many different places, to say that my thoughts were momentarily scattered would be an understatement.
I was of course terrified of the treatments and the pain that he would be in, I was terrified that he wouldn't beat the cancer, I was terrified that if he did it would come back and I was also terrified that if he achieved remission and became cancer free that the "late term effects" of the treatment would effect his life negatively.
Within 48 hours of Nick being diagnosed I was again sitting in my fertility clinic office but this time it was for Nick.
I have been with this clinic for 12 years now and to say that they have been more supportive then words could express. When I told them what was going on everyone shed some tears and my physician was quick to jump into action.
The plan was made, if Nick agreed a sample of his sperm would be frozen so that he would have the opportunity to have a biological child when he is older.
What a hard conversation to have with my teenager, not only do you have cancer but you wont be able to have children in the future unless I now thrust you into this uncomfortable adult world of infertility treatments.
Having dealt with infertility for most of my life its something that I didn't want my child to deal with but sometimes life hands you lemons and you must make lemonade.
The lemonade in our home is overflowing and I smile when I think about it.
The fact is that in Ontario the government only partially covers these expensive fertility treatments if the woman has bilaterally blocked Fallopian tubes. What this means is that in addition to beating cancer and coping with all of its lasting effects when Nick finally meets the girl of his dreams and is ready to start a family they will likely be looking at spending thousands of dollars to make that happen.
Sadly, having cancer at 15 has effected the rest of his entire life and ultimately the life of a future girl that will want to create a family with him.
Below is a petition to fight for the rights of men suffering from male factor infertility in Ontario.... one of these men is my son.

Please take 2 minutes of your time to sign the petition.

Years from now when I post a picture of Nick holding a baby with the same dark hair and eyes that he has you'll know that you were a part of him becoming a Dad without the financial burden that infertility treatments cause.
A few clicks of your keyboard keys can change his future and the futures of many men who want to change their titles from Cancer Patient to Dad!


http://www.petitiononlinecanada.com/petition/fight4mfi-fighting-4-male-factor-infertility-in-ontario/786

A Good Week

This week has been a pretty good one and I wanted to share.
Upon learning of Maxwell's lactase deficiency we immediately cut out all lactose and within three days we saw something amazing. The child that has never slept through the night started snoozing a solid 8 hours, the daytime fatigue disappeared, his constant thirst vanished and his appetite increased ten fold - the boy now eats CONSTANTLY and the scale is showing it. His GI symptoms have drastically improved and he is now stringing words, singing, being social and perfecting his "booty shake" and "sprinkler" dances (and dancing is something that he would never ever do).
I cant tell you where the improvement comes from and why he seems to have made a huge developmental leap, I doubt that there is any medical correlation so the most logical idea that comes to mind is that without constant stomach aches, gas, diarrhea and vomiting he is feeling better in general which is making things better in all areas.
I have been trying my hand at baking and my bread is pretty good, so are the dairy free smores cupcakes, corn bread and banana fritters and who knew that making pancakes from scratch was almost as easy as making the instant kind. I'm certainly not morphing into the hippie dippy type but I have to admit that I like knowing exactly what my family is eating and how it was prepared.
Today we went out for lunch for the first time since Max's diagnosis and while I felt a bit silly asking the waitress questions like "do you use butter when you poach eggs" I realised that eating out is not something that we have to avoid completely.
Today I also had a meeting with the head behavioural therapist about Riddick. I was prepared for the usual statements that all parents of children with behavioural issues are reminded of "positive reinforcement", "reward systems", "distraction" and "loss of privileges". I knew what I would be told as I've heard it all before (and use all these methods) so color me surprised when the therapist said I never say that we have to work on the child instead of their environment but in this case thats exactly what I'm saying.
We discussed having a more detailed assessment done which focuses more on observing him then getting him to "perform" so that there wont be so much "non-compliance" listed. Riddick is being bumped to the top of the list for a kids club that uses ABA techniques and he will be assigned a therapist to work with the school - the great part is that they want a rush put on this so that the therapist can attend the IPRC meeting and advocate with me about the change in school for Riddick so that he will be able to use the 8 hours per day to focus on life skills instead of learning about things such as strong and stable structures or script writing which is way above his comprehension.
Lots has been accomplished and I am feeling really good, in control and motivated to continue striving for the positive.

Educational System Woes

For average parents, having children that are school age is a time when they have the ability to shift their focus away from their children temporarily and place it on other things like employment, community involvement or caring for the home.
Of course there are still things like homework, agendas to sign, pizza money to produce, parent teacher interviews to attend and special days to remember but for the most part there are 7 hours per day that a parent can breath a little because the teacher is in charge - this is not the case for many parents who have children with special needs.
On my way home from groceries the other day I happened to see a child standing on the sidewalk which is off school property, he was casually throwing giant chunks of snow onto the road. As I got closer I realized that the child was actually mine.
The child that is supposed to be under the watchful eye of an educational assistant at all times.
I pulled over and we had a chat about what he was doing and why he was somewhere that he shouldn't have been. About 5 minutes passed and then the bell rang and I sent him on his way. By this point I was angry and called the school from my cell phone. While speaking to his teacher I explained that this was insanely dangerous as Riddick lacks all knowledge about safety and will without thought walk into the road or wander off with a stranger (especially if they have a dog),
The teacher seemed shocked and said that she would call me back momentarily - which she did.
Apparently the EA that is normally with him and another child during breaks had to stay inside as the other student lost her recess privileges. She assumed that the teacher made other arrangements for supervision and the teacher assumed that the routine was happening as usual. In reality Riddick was unsupervised for 40 long and dangerous minutes. I am just thankful that its me that drove by and not a pedophile or child abductor.
This is not the first time that something like this has occurred, I've discovered that Riddick was being supervised at breaks by children only slightly older then himself and on one occasion a supply EA allowed him to walk home alone simply because he told her that he was "allowed".
Riddick has not been able to attend school trips because there hasn't been adequate supervision and this was only remedied when I called the trustee and issued a complaint.
Since JK I have been saying that the "normal" school setting is not the right place for Riddick, at 8 he functions like a toddler and his days are wasted focusing on modified academics that are still too advanced for him. Those hours could be better spent learning life skills like stranger danger and not to eat entire packs of ex-lax or fling snot at friends.
After being a part of the "team" for my other son who has autism I learned what I should be doing with the educational system and what steps I need to take.
Once I started asking questions I was shocked at what hadnt been done for Riddick. In grade 3 he still hadn't been deemed "exceptional" which meant that the board recognized that he has "special needs" - without this being in place nothing happens.
I demanded that this be done and within a week (which is a miracle) Riddick had a psychoeductional assessment done and he was classified.
I also strongly recommended that he transfer schools to one with a class specifically for children with needs like his own.... after 5 years of making the same request they have finally agreed.
Now I will need to attend something called an IPRC meeting which is basically a team of professionals that will decide if that setting will be beneficial for him. As I did for my other son I will be attending this meeting with my "guns" blazing.
As scary as these issues of neglect are at school they only make my case better for the move.
Being a parent of a child/ren with special needs comes with enough complications without daily fear for their safety when they are with trained professionals but sadly for many of us its a part of life.
Hopefully soon I will get things stable and secure with school but then in the blink of an eye it will be high school and the the issues will again resurface.
So when you see a woman in line at Starbucks with bags under her eyes, tousled hair and stress lines on her face before thinking "God she looks unkempt" instead think..... perhaps she has a child with special needs and is getting ready for her morning shift of parking in front of the school yard to ensure that her child doesn't outwit the teachers and run away while chasing a wild squirrel. 

Answers In - Lactose Out

Finally after being in a Buffalo laboratory for weeks Maxwell's biopsy results have come back and thankfully something has tested positive. I don't say thankfully because I am glad that there is a problem but I say thankfully because now we know what the problem is and we can address it.
Maxwell has tested positive for something called Lactase Deficiency, like most people you are probably thinking Lactose Intolerance and while you are on the right track this is slightly different.
Lactase (also known as lactase-phlorizin hydrolase, or LPH) is an enzyme that resides mostly in the small intestine and its job is to break down lactose within the body.
When you are lactose intolerant it means that you have a reduced amount of lactase in your system but your body still has the ability to produce the enzyme
- Maxwell does not, he lacks that enzyme completely.
This diagnosis confused me at first because last year at the request of the paediatrician we did cut out most dairy and saw little benefit. At first I thought that this was because I didn't cut out things like milk chocolate or the occasional dollop of sour cream but what I didn't know was how much "hidden" dairy there is in food that you don't consider.
I had no idea that "Whey" is a dairy product and can be found in everything.... bread, candy, condiments, dairy, dessert, fast food, processed fruits and veggies, liqueurs, processed meat, medications and grains.
Other terms for whey include beta-lactoglobulin, glycomacropeptide (GMP), alpha-lactalbumin, lactoferrin, immunoglobulin, lactoperoxidase, bovine serum albumin (BSA), transferrin, lipases, or lysozyme.
Here I was thinking that we were cutting out the things harmful to him when in reality I was allowing him to fill up on things that still weren't good.
I have spoken with the dietitian and will be meeting with her multiple times but from our initial conversations she said that I should switch Maxwell to a lactose free milk and focus on fuelling him with fresh fruits and veggies, unprocessed meat and that while the occasional "normal" snack is ok it should be kept small and infrequent. I am going to have to learn how to make things from scratch and she said that it may not hurt to speak to some "strict vegans" about some of the food that they eat because they avoid Whey.
We are still waiting to hear back from the specialist but this lacking enzyme is likely congenital and so if I ever have any more children I will need to follow the same diet when breastfeeding but we'll cross that bridge when we get there.
With being only two Maxwell may not ever remember how tasty a milkshake is and he will have to be content with a Popsicle from the ice cream truck on a hot summer day instead of an ice cream cone. I remember how sad I used to be having to pass on food when everyone else was indulging (I had a chocolate allergy until my teen years) but sadly its just one of those sucky parts of life that Max will just have to get used to.
I am just glad that we got an answer while he is young and now we can start making him feel better and hopefully grow. Things like potty training may be easier once he is able to gain some control over his bowels, diaper rashes may become a thing of the past and his overall disposition may improve once he isn't dealing with chronic stomach aches anymore, not to mention I may be able to stop spending the small fortune that I currently spend on diapers and wipes (I'm sure I'll end up spending it at the health food store though)
I've resisted the urge to open a Pinterest account but now I may consider doing it, my brain is whirling with recipes to find, gardens to create and fancy aprons to wear while I become more domesticated!

Parenting For Dummies

Over the years I have given lots of thought to what being a mom is all about, what the job entails and how serious the responsibility is. I have thought about what type of mom I want to be and what characteristics I need to assume that role.
Being a mother is a job that I take VERY seriously as I am responsible for forming little people into grown adults and I need to be sure that I dont mess that up.
The problem that I encounter is that its not just me, they have a Dad and I've never given much thought to the role that he plays in their formation and daily lives.
My husband works very hard to provide for our family and making sure that there is a roof over our heads and food in our bellies has always been high on his list of priorities but life aside from that is where it gets complicated for us.
We have always been in agreement that we wanted a big family and that he would work outside the home while I would be responsible for what happens inside and so aside from lugging the nasty garbage to the curb once per week its our agreement that the remainder of the upkeep and chores would be my job.
That is fine with me but the children seem to fall into a grey area. Like many men Dom leaves the house in the dark and returns in the dark, a "troll" is what he calls himself. He is up and out the door before the children are awake and they return to their beds within two hours of him getting home each night but those 120 minutes can be tricky..... There is dinner to be eaten, baths to be had, homework to be done, fights to referee, toys to be tidied and beds to be climbed into. In a perfect world this would happen smoothly and effortlessly but lets not kid around, this is NOT a perfect world and so these tasks are often combined with time outs, threats of tv loss, an occasional resraint for someones safety and generally some tears and shouts that someone is not friends with someone else - and this is considered an easy night.
This short period of time is also when the issues with Dom and I tend to surface.
I often feel like he is sitting back observing me becoming dangerously close to losing my marbles without an offer to assist and he often feels like I am so particular in how I want things done that he doesn't get involved because I will feel that he is doing things wrong or I will override his methods.
I could say that I am totally right and he could say the same thing but at the end of the day I think that there is some validity to both of our views. In all reality neither of us knows beans about Dads and what it means to be one or the description of the job. Only after Nick got sick did the relationship with my Dad begin to flourish, my adult emotions and thought process is now able to see him as human and not the fairy tale parent that I wished he was after my parents divorced. I was raised by a single mom and she was a force to be reckoned with, her motto was "if I want it done right I might as well do it myself" and that's a concept that I ran with.
Like me Dom was raised by a single mom and also had a boatload of older sisters, as the "baby" I think that perhaps he was coddled a wee bit.
No Dads in the picture means no example of what to do or even what not to do and there are times when that is problematic on both of our parts.... he doesn't know what to do and I don't know what I want him to do.
This would be a great time for kids to come with a handbook.
Our family is unique, "perfectly imperfect" and that's how I like it but the recipe for this soup requires extra helpings of responsibility, involvement and dedication and its hard to have those 100% of the time. We will solve our parenting division dilemma and life will be peaceful more functional but I hope that we are able to accomplish this before the clay dries and the boys are no longer moldable .