With Great Power Comes Great Responsibility

Any parent will tell you that there are multiple times in your child's life when you need to come to their defense or speak up for them when they are unable to do so for themselves.... this is called being your child's best advocate.
This is a term that I hear frequently since I have children with developmental and medical special needs however it is not a role that I imagined I would have to play nearly as much as I do.
This summer I have dealt with multiple issues - doctors forgetting to repeat medication, interlock nurse refusing to write a letter for the school board allowing Nick to continue being on home instruction while he completes radiation treatment, nurses wanting to take a "wait and see" approach to side effects that we've been told are inevitable instead of starting medication to prevent terrible side effects.
Canada's Wonderland stating that they dont have any special medical passes when they most certainly do, Receptionists being tardy faxing in referrals to specialists, Therapists taking 3 months to make an urgent appointment for a child struggling to come to terms with his cancer diagnosis.... and the list goes on and on.
As a parent of children with unique needs I have developed a thick skin, I know that many professionals are not going to like me but being their friend is not my goal - getting the best care for my children is.
This means that there have been times where I have had to call and leave voice mails every day, sit in the office until someone will see me, skip links in the chain of command and seek out supervisors and just be a plain old pain in the ass until what is in the best interests of my children happens. 
I refuse to apologize for this as its a characteristic that seems to be part of the natural development when you parent a child with specific needs.
Tomorrow is the start of the new school year and this means that my requirement for advocacy will increase ten fold as I now will be dealing with four new teachers, assistants, principals and other community affiliates that the school will involve to assist them.
If you were to look at my cell phone bill each month you would think that I was an overly popular call girl. Pages and pages of numbers that I dont recognize and the list of "private" or "blocked" calls is extensive.
I have gotten used to answering the phone and hearing  
Can I please speak to _________'s mother please instead of Hey Cass how are you but I know that its all part of the package.
As the title says With great power comes great responsibility and while that wont always make me popular it will always make me feel as though I am doing right by my children and that will always be a better feeling then being liked by people who wont remember me a year from now anyway. 

Seeking Greatness Outside & In

I kept my fingers crossed and had others do the same but unfortunately I did not get the financing for the second floor addition for the house. I could be frustrated and disappointed but I'm not, its a bit of a hiccup in my master plan but thats ok (I am used to hiccups) so I will simply have to try again next year.
The one thing that I have noticed lately is that I seem to have stumbled upon myself, that quest that I've had for years to "find me" seems to have disappeared. I no longer seem to thirst for the answers to the who am I, what am I all about, what do I have to offer to the world questions that have flooded my mind for years.
Over the last five months I have reevaluated every aspect of my life. I discovered that similar to Nicks lymphoma there were areas of my life that were as distructive as cancer and needed to be treated just as swiftly.
I have my weak moments but over all I feel strong, capable, and able to handle anything that comes my way, which often seems to be more bad news.
I feel as though my inner self is whole - that aching hole thats been buried deep has somehow been filled.... although I don't know how.
I no longer seem to be overwhelmed by my agenda or constantly ringing cell phone and while there are many appointments required for all of my boys, I seem to fit all of the pieces in place like a giant puzzle.
Nick still has months of active treatment and follow up aftercare, Kurt still has lots of issues surrounding his autism, In addition to Riddick's global delay he has now developed Nystagmus on top of his Strabismus and so his eye sight has further diminished. We are eight months into the wait for Maxwell's tympanostomy tube surgery and we've now discovered that he also has a lactose sensitivity 
Even with all of the chaos and craziness the inside of me seems to be on the mend and so I think its time to work on the outside.
Its time to eat healthy, lose some weight, find some style and have my outside match my inside.
In four short months I am going to be 30 which is the age that I have always associated with the non-nogiatable start of adulthood, no longer being in your 20's leaves no room for the youth excuse.
Life seems to be determining my path, Treasure Beyond Measure Photography is off to a good start and my foot is anchored steadily into the cancer community.While my children require more then most I feel totally capable of meeting the omnipresent demands that are a part of being their mom.
Its now time to stop dreading and dreaming and start DOING and I figure if I am going to be doing great things in my life and the lives of my boys then I want to look great doing it!

Renovations For Uniqueness

I've said it many times but my family is a unique bunch and while I do my best to plan accordingly certain things change the plans that I have made.
We bought our home 4 years ago based solely on its location, its around the corner from my parents in a desirable part of the city and its close to the boys developmental pediatrician and autism services.
When we moved in we didnt expect our family to grow based on all of our previous failures, we also didnt expect our son to get cancer. The home at the time fit us with 3+1 bedrooms but now we are busting at the seams.
Kurt and Riddick can no longer share a room, they have a difficult enough time transitioning at bedtime even when they are alone but together its impossible... its either world war 3 or party time in their room each night and 99% of the time someone ends up being sent to the couch by a tired and cranky mom.
Nick had to move up from the basement to the main floor to get away from the draft, dust and to be within ear shot should he need something. He moved into Maxwell's room and now Dom and I have a toddler for a roommate. He still has 9 weeks of treatment and six months with a compromised immune system so he couldn't move back to his old room anytime soon even if he wanted to. With the risk of relapse I would also rather him be in a different room so that he wont have to move again if (God Forbid) the cancer should return.
We discussed the fact that Kurt and Riddick will potentially live at home their entire lives, Nick needs a room above ground and Maxwell will be home for years as he's only just become a toddler - there is no choice we must do some renovations.
I'm now attempting to make some financial plans in an effort to add a second addition to our home, it wont be easy, it will be chaotic and crazy and I am sure that many times I will question my sanity but in the end when my family is in a safe, comfortable, stable home that is built to suit all of our unique needs it will make all of the insanity worth it.
Keep your fingers crossed that I can pull this off.... I've dealt with a lot of stuff but this is gonna be tricky!

One Busy Mama

Boy have I been busy lately!
In addition to Nick's daily radiation and weekly oncology appointments at two different hospitals, we also had a bit of a chicken pox scare that landed him in the ER in the middle of the night. It thankfully wasn't chicken pox or else he would have needed to be admitted and quarantined and put on antiviral medication. I was having a bit of a panic attack because we then would have had to cancel Maxwell's 2nd birthday celebration and I didnt have any time to arrange child care.
The following morning after the ER I woke up feeling horrible, at first I thought that it was kidney stones again and then I thought the flu but in all reality I think that I was just burnt out because after 18 hours of sleeping my fever broke and I felt much better. It was an awakening for me, I need to take care of myself because that day I was totally useless and looking back now completely delirious too because I don't remember much of that day at all.
Since my mystery illness I have been encouraging the boys to be more self reliant and have been reprimanding them more consistently when they act up. Now is the time to make the improvements that need to be made to not only allow me to keep my sanity but also to allow us to function easier as a family unit. We are a unique bunch and it takes some creativity, comittment and resilance to keep us operaing like a finely oiled machine and over the last few months I've let a lot of things slide and its time to get back on track.
I also did something that I have never done in my entire life.... I have booked a relaxation massage for later this week.
I have also been working very hard on my new business Treasure Beyond Measure Photography and I've been asked to collaborate with POGO (Pediatric Oncology Group of Ontario) and provide them with my thoughts about how pediatric cancer care has/hasn't changed over the last five years and offer my suggestions about areas that need improvement.
Nick is now on his three week radiation break before moving on to the second phase, we were told that of the three phases this would be the one most likely to make him sick because it will be radiating his internal organs. We are hopeful that with some preventative measures and medication it shouldn't be too bad.
His hair is starting to grow back and he is now sporting a little mustache - although he hasnt gained anymore weight he is holding onto the eight pounds that returned while doing the high calorie diet and appetite increasing medication.
They may be baby steps but they are steps in the right direction and for that I am happy!

Catching Up With Friends

Hello Blogger Friends!

As you may have noticed I haven't blogged in a little bit and there is a reason for that.... there isn't much to blog about.
Nick is now wrapping up his second week of radiation and so far (knock on wood) aside from a slight scratchy throat and some fatigue he hasn't had the side effects that sometimes accompany this treatment. He now even has some uber soft peach fuzz growing atop his head.... the doctor said that this new baby soft hair is likely to fall out again but it certainly made me smile when I noticed it and his baby brother sure likes to touch it.
When Nick was first diagnosed we knew that this experience was going to change everything, there is no part of ones existence that cancer doesn't effect when it swoops in and overtakes your life.
My views of many things have changed and one of those areas is friendship.
I would like to think of myself as a good friend, I enjoy seeing those that I love experience positive things and I enjoy being a part of the lives of those that I hold close but I realized that I gave my friendship away to easily and even worse I required nothing in return to keep it.
Nicks diagnosis changed every part of me without my permission but the one thing that it showed me was who was indeed my friend, sadly some that even shared my own blood were not while others that were complete strangers before quickly obtained a piece of my heart.
In the months that have passed since we found out about Nick's cancer there have been MANY of my own family members who haven't bothered to pick up a phone, pen or even send an email, there have been friends who at one point were very close and yet have only been in contact a very few number of times. Its always the same, I dont hear from them but then when we bump into each other in a public setting I hear the same thing, I was just going to call you .... I smile and nod all the while thinking yep sure you were.
I have experienced such kindness from people that are complete strangers (Kurt's teachers dental hygienist sent us a Shepherds pie!) and yet those that claimed to love me disappeared when I needed them the most - its sad but at the same time I'm glad because my time, energy and emotions are better saved for those that deserve them... like you all. You who take the time to read my private thoughts, send me messages of strength, check in to see whats going on in my life aside from the cancer, promote my new photography business, sponsored me when I did the Relay For Life and have just done the things that TRUE friends do!
You who know that a few strokes of a keyboard can accomplish the same thing as a big giant hug - I appreciate you all more then you could ever know.
The social worker has said that this often happens because people just dont know what to say so read carefully because I am going to help you just in case you ever need some guidance, just simply say..... I dont know the right thing to say but  I want you to know that I think about you often and I am here if you need me.
I have never expected my family or friends to hold me up, coddle me, be at my beck and call, babysit my kids, fund my increased expenses or take over any of my responsibilities; I have merely expected them to not vanish from my life. If that is too much to ask then in the ever honest words of Kurt - Good Riddance!

The Overwhelming Fat Fight

The medical term for Nick's newest condition is called Cancer Induced Anorexia but whatever the term its hard to manage.
Last week we discovered that Nick had lost 15 pounds over a two week period. We tried for 6 days to put on some weight using meal replacement shakes but we didnt have any luck so Nick now takes a medication that is designed to increase his appetite. We were told that this medication for some people works well and for others not at all, it could also take 7-10 days to begin to work. If Nick continues to lose weight then we may not have that long before needing to move on to a more drastic intervention - a feeding tube.
When first approached about the possibility Nick was admanent that he did not want one but yesterday after only being able to injest two mouthfuls of a blizzard he asked that I call the doctor and make the arrangements.
One would think that gaining weight would be easy, If I even smell that wonderful fried chicken KFC scent my thighs each grow two inches but for someone with cancer its not that easy.
Most often Nick doesn't feel hungry and during a rare moment that he does if he doesn't eat right that minute then the moments passed. The time that it takes me to make a sandwich or heat up some soup often results in a missed opportunity to consume some calories. His body also doesn't seem to want to digest any fats, if he attempts to eat any meat, fried, heavily sauced, or overly rich foods he is slammed with gastrointestinal upset and vomiting.  Internal organs use calories as fuel to function and because Nick's are already compromised from the tumors he is at greater risk of them shutting down. To ensure that they stay aware of whats going on inside of him, Nick now gets a weekly chemistry blood work up in addition to his regular level check. It seems like one thing after another but we are getting through - my family is a force to be reckoned with and has a take no prisoners attitude - cancer has overstayed and now needs to take a hike!

The Choice To Adjust

Today I again revisited my motto, The pessimist complains about the wind, the optimist expects it to change, the realist adjusts the sails. Things never seem to go according to plan and today was no different, it was Nick's radiation consultation and it was less then easy to say the least. We were initially told that if Nick needed radiation it would take 2 weeks, however that was incorrect. It is actually 14 business days for his chest, 14 business days for his abdomen and 14 business days for his pelvic area with a 2 week break in between - for a grand total of 14 weeks IF Nick's levels dont drop and he doesnt get any viruses.
Here we were prepared to be done treatment in two weeks and now it looks like he wont be done until October. His treatment length has pretty much doubled and I have been made into an unintentional liar. Nick isn't almost done, he doesn't only have a little bit longer and my frequent words of reassurance were empty lies which have left me feeling like an unequipped mother.
For the last few weeks things have been very hard for Nick and tears have come often, he is tired, emotionally drained and physically sore; I have frequently heard him say that he is ready for all of this to be done and he doesnt even care about the outcome.
Today was the straw that broke the camels back. During a break between appointments Nick took off from the hospital, standing right outside the doors that I carried him out as a newborn 15 years ago we today spoke of the possibility of him dying if he refuses radiation. I never in my wildest dreams envisioned having a conversation with my child about his possible death should he decide not to continue being poked and prodded like a lab rat.  He agreed to go back in but the tough front was short lived, once fitted with his immobility mask and locked onto the CT table for "planning" he became claustrophobic and began to have a panic attack. I was called in to comfort him and months of anxiety, fear and emotions came flowing out. In front of about 10 people I held my son and reassured him that he could do this, that I know his strength and that I would stay with him until the end. I asked if he trusted me and with a quiet nod yes he laid back down on the table. It was against regulations but I stayed in the room and with an amazing amount of bravery Nick completed the planning scans and got his marker tattoo's.
Our days will now consist of daily trips to one hospital for radiation and then to a second hospital on a weekly basis for finger poke and level checks - if I thought that cancer consumed our days before I havent seen anything yet.
I hate watching my son suffer and hurt, its horrible to not be able to do a damn thing to ease his worry or pain.
For the last month I have been working on a surprise. I have planned a big party for the 26th of August to celebrate the end of Nick's treatment which we believed would have been this month. The banquet hall has been booked, the menu planned, the invites for 100+ people made and the centerpieces discussed with the designer.... It was like a kick to the gut but tonight I called and cancelled the event.
I dont recognize my life, I dont recognize my son and things are falling apart all around me; I've gained ten pounds and dont seem to be able to get a handle on the poor food choices and emotional eating and I've had to reschedule Maxwell's 18 month vaccinations four times now... the boy is 23 months old!
I need to get a handle on things, to reassert some control, to find some sort of normalicy again - maybe when I do that I will be better equipt to deal with the drama, emotions and chaos that most days bring.
The only thing that I can control through out all of this is me, my emotions, my behavior and my choices.
I am not a pessimist and wont complain about the wind nor am I an optimist and wont expect the wind to change.... Ever the realist, I am left with no choice and there is only one option.... let the adjustment begin.