Mystery Diagnosis

Maxwell and I were released from the hospital this morning but the diagnostic part of this mystery isn't over yet, we now need to wait for an MRI appointment and for small intestine biopsies to come back from Buffalo.
On Tuesday Maxwell had an upper GI endoscopy done which was not a nice test.... he was strapped to a board and then contrast fluid was squirted down his throat while real time xray images were taken.
At one point there appeared to be a "blockage" which was slowly forced open by making him drink a bottle of apple juice. Once back in our room the doctor came in and told us that in his opinion Maxwell has one of two things.... duodenal web or annular pancreas (see descriptions below).
An endoscopy was scheduled for the following day and the duodenal web was ruled out but the doctor did note that his colon was "twistier then most at his age".
Since the web was ruled out he is now more confident in his theory that its annular pancreas and so the MRI needs to happen to confirm this.
The doctors and nurses were amazing and remembered me from nine months ago when Nick was diagnosed. I got the distinct feeling that they pushed the investigations further then they normally would based on "all our family has been through in the last year" (a comment that I heard multiple times there).
The nurses also voted me "most self sufficient parent" because I changed our own sheets, weighed Maxwell's diapers myself, tracked his weight daily and went to the cafe for milk, juice and jello instead of calling for them. In all honesty the nurses have enough to do without me having them do things that I am more then capable of doing myself.
By the end of our stay Max would push the green button to turn on the blood pressure machine and willingly lift his shirt when he saw them reach for their stethoscope.
He was the "boyfriend" to multiple nurses and his superhero pj's were the envy of many - my boy is a charmer.
This time in the hospital (like always) has given me ample opportunity to think and prioritise and some changes have been made to my plans for the immediate future.
As much as I hate hearing it everything does happen for a reason and what is meant to be will be...... regardless of what plans I had in mind for 2012 my focus needs to be on health and inner peace  for myself and my family
Bring on Twenty Twelve.... We are ready!

Duodenal web

A duodenal web, diaphragm or intraluminal diverticulum refers to a complete or incomplete obstruction at the duodenum due to a membranous web.

Although they are frequently congenital and occur in the paediatric population, some can can present in adults and may also be acquired.

               

Annular pancreas

Annular pancreas is a rare condition (1 out of 12,000 to 15,000) in which the second part of the duodenum is surrounded by a ring of pancreatic tissue continuous with the head of the pancreas. This portion of the pancreas can constrict the duodenum and block or impair the flow of food to the rest of the intestines.

Its Been Quite A Month

December has been quite the month.... even aside from Christmas.
Even though things have been complicated, over scheduled and a bit crazy I am looking at everything as a blessing.
Last week Nick was officially classified as being in remission - my son beat cancer!!!
We still have to go to the clinic to monitor his weight, be cautious about germs etc for the next six months and then have all of his scans repeated every 3 months for the next couple years (and then it moves to 6 months and then annually) but knowing that there is no active cancer brewing in there is a great feeling!
My wee Maxwell has been in the hospital for a week now (but we got a pass to go home for Christmas).
He has had some gastro intestinal issues since birth but we always just thought that he had reflux as a baby and then perhaps a lactose sensitivity like his dad but these "bouts" have gotten worse as he has gotten older.
For a while there would be upwards of 8+ weeks where he would be good and then all of the sudden the poor boy would suddenly begin to explode from both ends. This would happen for a few days and then in the blink of an eye he would be fine again. We switched him from milk to soy and then cut out all dairy completely, I looked for triggers that would set off whatever attacks these were but I never figured it out. Honestly I as so caught up in Nick that perhaps I wasn't as vigilant with my Dr. Mom investigating as I should have been but recently I noticed that the time in between these flare ups was getting shorter. I called our paediatrician and made an appointment for the new year but this most recent one was more then his body could handle. He lost 3 pounds from dehydration and fell off the growth chart landing him in the hospital with the status of "failure to thrive".
We were connected with the GI Dept and they have been vigilant about running tests. They are pretty confident that he has some sort of malabsorbation issue and his body simply cant process something but what they don't know. What we do know is that he tested negative for virus, parasite, lactose intolerance, cystic fibrosis and they are pretty sure that he absorbs fat OK (but the actual test isn't in yet). We are home until tonight and then we return to the hospital for more blood work, a barium swallow and the "gold standard tests"... a endoscopy, colonoscopy and biopsy.
It has been a challenge being away from home but these tests needed to be done and so for that reason I am feeling lucky. Nick has been a great guide for Max, showing him that their "red caps" match on their IV tubes and that the daily saline flushes don't hurt.
 Hopefully in the next week or so we will have some answers......
As for me - I turned 30 on Saturday. The age that I always equated with being "old". I am instead looking at it like wine only getting better with age. With age comes experience and thus a basis for knowledge and intellect. Maybe now I wont get the "your just a baby" comment when people hear my age and I have been told more then once that "30 is the new 20"..... Boy I hope that people aren't lying to me.

Has Anyone Seen My Christmas Spirit?

My Christmas spirit has vanished this year, or else its taking the scenic tour to reach me.
I'm almost done shopping, the carols are playing, the tree is trimmed and egg nog in festive glass jugs sit on the shelf of my fridge and yet my holiday spirit is no where to be found.
Maybe its from the lack of snow or the fact that this year has brought so much "excitement" (for lack of a better word) that Christmas has been robbed of its importance in my life.
I suppose it could be that I don't know what to do this Christmas, this is my first time taking on the role as the holiday matriarch.... its always been my Grandma, and then my Aunt Bonnie and now the torch has been passed to me so it seems.
There wont be the horse drawn sleigh ride, the same trivia question about the age of the tree along the path to the toboggan hill, the potluck in the cabin where the choice between chili or stew is always the topic of conversation. I wont have the wintry small town view from the top of the Liskeard bridge hill and mostly I will be missing some people that play a key role in my holiday celebrations.
Its time to make some new traditions, to celebrate differently to branch out and be the head elf of our house instead of being a worker elf.
I have never really enjoyed valentines day, Easter, Halloween or even until recently Thanksgiving but Christmas was a different story - go big or go home!
We celebrate huge and its always magical (despite the fact that each year I end up plagued with the holiday blues after the celebrations wrap up). 
I don't know where my spirit is but it needs to get here soon - there isn't much time left and I don't want to be on the naughty list.

We'll Just Call Him Bubble-Boy

We've been attacked! The germs have us held hostage again *sigh*
This past weekend my two aunts came to visit from up north, the last time that we were together was in the summer at my Grandpa's funeral. This was the longest time in between our visits and the boys were eager for their arrival. We decorated the tree and made plans for the nurse to come to the house as my Aunt still isn't recovered from the accident. Of all my children Max is the one that loves music and story time the best and since those are two of Aunt B's favorite things I thought for sure that the weekend would be enjoyable for him since there would be someone able to just sit, snuggle and read or sing but Max proved not to be in the mood.
My normally happy boy was a super huge crank! He cried, moped and complained the entire visit.
After my Aunts went home Max spiked a fever, and the vomiting started. Three days later the fever is still there and now its accompanied by a horrible cough and never ending runny nose. Today while grocery shopping Maxwell was given endless complements about what great manners he has and how smart he must be to be so savvy with his kleenex and knowledge to cough into his elbow at such a young age.
I smiled and agreed but secretly thought after hearing your mom yell COVER YOUR MOUTH a thousand times I think that any child would figure it out quite quickly.
This is the first year ever that there have been so many virus and illness, my guys are usually really healthy.
Its sort of a catch-22. We have to be cautious of germs, be extra vigilant with cleaning and hand washing etc and avoid exposure to known sources in order to keep Nick healthy but the more we do those things the more we are making ourselves open to infections by destroying our natural defences and in turn are then putting him in direct contact. I'm thinking that there is only one option, I'm going to have to look on Ebay for a bubble suit for Nick to wear.... yep, that seems to be the only logical option.

Case Of The Dreaded Pox

The drama never ends in our house, We have been very cautious about germs and contamination and knock on wood Nick has not caught any virus BUT on Monday my eight year old Kurt woke up covered in spots. It took me less then a second to realize that he had the chicken pox. I sent an email to our oncology nurse to see if she still wanted us to come at the end of the week for finger poke and I got a reply that said I need to talk to you, call me immedietly. Before I had a chance to call her she called my cell phone and told me to get Nick to the hospital asap.
Once there we were ushered right into a quarantine room and the doctor let us know that Nick would need something called a VZIG (varicella-zoster immune globulin) Transfusion to try and minimize his risk of getting the chicken pox. With people who have no immune system the varicella virus can cause far worse things then just itchy spots, it can attack the brain, eyes and other major organs also the spots are an open invitation for bacterial infections. To quote the doctor, "Nick getting the chicken pox could be disasterous". We are not out of the woods yet because with the incubation period any of my children can get the infection until approx December 19th and if they do then the incubation period starts all over again. Nick is now on a quarantine watch and cant return to the hospital until the 19th has passed which means that we cant monitor his platelets or hemoglobin, or neut counts. I instead have to rely on my motherly instinct to notice if something is not right. If he does happen to get the chicken pox he will need to be in the hospital on isolation getting large amounts of IV antibiotics for a week. 
We are now on pox watch and our hepa filter is running on high - Nick has slept most of today and has eaten nothing but a cinnamon bun and some coffee which is not the best sign of good health but I'm keeping my fingers crossed that he's just having a rough day.

Lavender Bulbs, Butterflies and Bows

I broke my own rule - I have decorated for the holidays before the calendar says December.
The kids have been so excited and every day they ask how many "sleeps" there still are until we can put up the tree. I guess this year I want to linger in the holiday spirit for as long as I can.
This year is going to be different for us, this will be the first year that we wont be going to New Liskeard at all. This will be the first year that we wont all congregate in my Grandparents basement on Boxing day eating copous amounts of food and sending platters back and forth down the table in assembly line form.
This will be the first year that my Grandparents will be celebrating the holidays together in Heaven and I often think that they may have had a hand in ensuring that Nick gets to celebrate here with us on earth.
Traditionally Christmas colors are red and green or silver and gold but this year I decided to do something different. I gave away our 5 foot pitiful white tree with crappy decorations and I bought a beautiful 7.5 foot pre-lit giant and decorated it with lavender glittery bulbs and butterflies. Atop the glowing tree sits an over sized bow. When most people think of Christmas they dont think Lavender but for me its perfect, its my favorite color, it was the color of my wedding and it also happens to be the color of Hodgkin's awareness.
As I sit here blogging the tree glitters and sparkles in a way that is breathtaking - for the first time ever my Christmas tree feels complete, it doesn't feel like there is something missing... maybe my tree is a nice portrayal of my life at this moment in time.

Change Is In The Air

I generally dont like change much but its inevitable and this time I think its for a good reason.
My blog is going to be changing a bit... not much, but I am hoping that it wont focus entirely around cancer and I can begin to share my opinions, thoughts and feelings about all of boys and the world that surrounds us.
There of course will still be cancer talk as it continues to be a part of our lives but hopefully now that treatment is done it can simply be a page in our book and not the entire story.
My life has always been far from boring and with the big plans that we have for the future I think that trend will continue.
I hope you'll stay tuned......

Winning Is Everything

Today is a good day, its a day that we've waited a long time for.... 232 days to be exact.
Today Nick completed all of his scheduled treatments - unless told otherwise chemo and radiation are complete!
Things are not "over" as he still needs to have all of his scans repeated in December to confirm remission and then will have frequent follow up to watch closely for relapse.
The doctors are debating about whether to remove his picc line in December or leave it in for the first year of remission.
He will remain immune compromised for the next 6 months and will need to continue taking medication to prevent illness but will be able to return to school for second semester in February.
Today is a great day and its one that we prayed for but it doesnt come without anxiety. After almost a year of functioning in a certain way its hard to just switch gears, I'm not sure if we know how to live "normally" or if its even possible.
The fear of the cancer coming back is always there too, I'm hoping that the anxiety will leave soon.
We said good-bye to the radiation techs today and they instructed Nick to come back and visit his "girlfriends" soon.
They also gave him a certificate of radiation completion and a gift card to future shop.
It was certainly a bitter sweet good bye, lots of hugs and tears and well wishes for the future.
When Nick came out of the treatment room I gave him a chain with a tag that said "survivor 01-11-11", he slipped it over his head and quietly whispered "thanks mommy" and with that we were off.... out the doors and up the stairs, hopefully to never return.

Lather, Rinse, Repeat

Its arrived with a bang.... cold and flu season is upon us and it has often made me a nervous wreck.
For the average healthy child a cold or flu is a nuisance but it isn't overly dangerous, for a person with cancer it can be at worst fatal.
I've never really been a mom that's been a big germ-a-phobe, I've let my boys play in dirt, puddle jump, and I've watched with only slight disgust as one of them ate a piece of chewing gum off a movie theater floor but this is different.
I am now noticing how dirty and germ infested things are and more concerning to me is how dirty and germ infested people are.
I cringe when the woman at Tim Hortons handles my cash and then makes my coffee without washing her hands first, debit terminals are handled by hundreds of people everyday, elevator buttons, door knobs... germs are everywhere and there is no avoiding it.
All I can do is teach my children by example, we wash our hands often, cough into our elbows instead of our hands, avoid touching our faces and try whenever possible to not share drinks etc.
The part that gets me frustrated though is the amount of people that are so unconcerned and unaware, that will hack all over you, wipe their nose and then touch something or worse, use the washroom and not wash their hands.
We recently were at the developmental pediatricians office and a child in the waiting room was obviously sick. As she coughed, sputtered and constantly perfected the art of the sleeve wipe that most children do, her parents sat and chatted about how clearly ineffective the antibiotics were but never once wiped her nose, gave a reminder to cover her mouth or washed her hands with the antibacterial products that are provided on every wall.
At one point the sun shining through the window provided the perfect lighting for me to clearly see the products of a sneeze travel at light speed and land on the back of Kurt's head (mental note: disinfect Kurt's head with the antibacterial foam by the door).
When Kurt coughed into his elbow I offered praise for "coughing properly" and reminded him that we need to always cover to help keep the germs away from Nick....
I thought perhaps that at the very least these parents would think that I'm a snotty b*tch and would either instruct their child to cover her mouth or would go out to the hallway away from the toys but nope they didn't even blink an eye.
Clearly I again expected too much.
On another occasion I watched a woman leave the mall bathroom without even turning on the tap, I wondered if it would make any difference if she knew that its possible now that a medically fragile person could be hospitalized, require blood products or worse... because she couldn't take two minutes to rub some soap around on her hands (not probable but indeed possible).

Yes, I am aware that our Mothers always told us that its nice to share - but I don't think illness was what they had in mind.

An Absentee Hockey Mom

After six months and one day of fighting a huge battle Nick has laced up and is guarding the net tonight in his first hockey game of the season. Instead of being at the arena with my coffee and my camera cheering his team on I am parked at my dining room table blogging.
 I just cant go, I am an anxious hockey mom at the best of times and I drive Dom crazy with my tendency to jump out of my seat or pace behind the chairs but watching Nick now would be too much for me and everyone around me. I can feel my heart race just thinking about his heavy equipment, his blood rapidly flowing, the concern about his picc plastic coming off and the possibility of infection from the contaminated sweat... what if he shares a water bottle with someone who is getting sick - ahh I'm such a mom!
Most of all I dont want to see the disappointment in Nick's eyes when he comes off the ice... whether his team wins or loses he will find fault in his personal game - thats just his nature.
Like me he sets the bar so high for himself... go big or go home, zero to sixty in seconds and anything less then perfection is unacceptable, its a curse that unfortunately I think both of my biological children have been born with.
Instead of being proud of the fact that despite having cancer he is out there playing he will instead focus on not skating fast enough, not having quick enough reflexes, being tired or will find fault in the league or the other players.
Tonight he spent hours pacing around the house internally battling about whether to play or sit the season out, he claims that its because this year there are two goalies on his team and he "doesn't think its fair that I paid 100% and he's only getting 50% of the ice time" but in reality I know that he is doubting his own abilities but doesn't want to openly admit it for fear of looking like a failure.
Whether he protects the net or not I am proud, I can only imagine that if I had cancer I would lay in my bed and feel sorry for myself but not Nick, he remains active and while he has his negative moments he really doesn't let cancer be the focus of his days.
Today as he debated about playing I told him to "let it be an early start of his normal life", he sort of huffed and mumbled "yeah... real normal".
Perhaps normal isn't the best word, what is normal really?
There's a saying that normal is only a setting on the washing machine - seems like a true saying to me. Maybe we should call it his new life or his different life instead.
I just need to find a term that doesn't make him huff and roll his eyes at me... cancer may attack many cells in the body but apparently the obnoxious teenage cells are immune.

A Thankful Heart Is A Happy Heart

Thankfulness is being grateful for what we have. 

Its an attitude of gratitude for learning, loving and being. 

Appreciate the little things that happen around you and within you everyday. 

Think positively. 

Thankfulness brings contentment 

~ The Virtues Project

Every year on thanksgiving my family plays a game. Early in the day the kids decorate a box or bin and then before dinner everyone is given a slip of paper that says This year I am thankful for___________, once everyone's filled out their card it gets put in the box. Once gathered around the table the box is passed from person to person and one by one the cards are read aloud... I guess its kind of like our form of saying grace.

I started this tradition the year that Nick was born because I wanted my children to grow up being thankful for what they had and I wanted them to have to occasionally stop and think... really think about how lucky they we all really are. The politically correct answer always is This year I am thankful for my family but occasionally we get some original ones.

This will be the first year in 15 years that we wont be playing the game. 

I cant.... I dont know what to write. Watching your child fight for their life is a horrible thing but the one positive thing that it provides is a renewed and exaggerated sense of thankfulness.

This year I am thankful for more then could ever be written on a post it note and I dont think that I could pick just one thing. I also dont think that a turkey basted with tears is going to be tasty.

Its so easy to complain and live in the negative, to function each day with a pessimistic attitude - That was me, I lived my life like that but I dont anymore.

Imagine living your life truly seeing the positives, the good things that each day provides in addition to all the not so wonderful parts. Of course I appreciate all of the obvious super fantastic things in my life like the love of my amazing family, the unbreakable strength of my marriage, Maxwell finally getting his tubes put in, Dom's benefits which provide the medication that Nick needs, Kurt and Riddick making developmental gains, My Aunt Bonnie finally being on the mend, my Dad making himself a daily part of my life after many years of distance (him telling me that he was proud of me after the Relay for life is something that I will never forget so thank you to whoever taught him how to text) and of course last but not least the fact that Nick is a fighter and is kicking cancer's ass!

But as important as those BIG appreciations are I now find myself thankful when I get to drink my coffee hot, when I can finally see my laundry room floor, when I find a letter mixed in with the bills in the mailbox, when there is a parking spot at the hospital that doesnt require intense focus to get into. When I find a great sale or a pair of jeans that make my butt look great. My days may be filled with some things that I'd rather not deal with but they are also filled with lovely things that I'm sure have always been there but I just havent noticed.

This Thanksgiving be thankful for your family and friends.... be thankful for them EVERYDAY but also be thankful for all of the many things that form the silver lining to your otherwise gray cloud. When you feel what real thankfulness is you will never look back - its almost euphoric.

 My boys have always liked the Veggie Tales movies and each of them seem to have always chosen Madam Blueberry as their favorite... the moral of her singing story is that  A thankful heart is a happy heart  - I believe that no truer words have been spoken.

 

You Asked - I Answered

Last week I invited all of my faithful followers to send me an email asking any question that you wanted to know the answer to.

Some of the questions were serious, thought provoking, funny and down right foolish.

I have picked a few randomly and decided not to think of what the correct or PC answer would be and I am just going to answer them honestly and from the heart.

Here we go.....

What did I invision my life being like?
I thought that my life would be similar to this but minus the infertility, autism, cancer and stress. I always wanted to get married, have kids and pets, be happy and just feel fulfilled.

What is the hardest part of having a child with cancer?
Seeing him sick and being unable to help and knowing that he is scared of the unknown and not being able to reassure him with any certainty that things are going to be ok.

What is my day like?
It varies from day to day but they are all filled with meetings, treatments, phone calls, emails and other must do things.

Did I always want a unique family?
Honestly.... no. I wanted what most girls want, a husband and some kids. But life comes with twists and turns and the path that I took wasn't a straight forward one, it was bumpy and with pot holes but at the end of the trip the destination was the same.
One of the poems that I love is called Welcome to Holland. When I am having a bad day and I am viewing my life in a negative way I will often read this poem:
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

How do I do it?
This question always kinda makes me laugh, how do I not do it? Its my life, I wake up each day to this existence and so I "keep calm and carry on"... most days are good, most days contain laughter, hugs and smiles, most days I wouldnt trade my life for all the tea in China..... most days.

What are some things that I have learned?
Oh good question! I learned that I really am stronger then I give myself credit for, that nurses are underappreciated, that there are some kind and wonderful people in the world, that blood does not make you family, that I can function on very little sleep, that kidney stones really hurt, that my child is like me in so many ways, that when push comes to shove I can be a mean and agressive person, that I am able to remember the names and dosages of many medications and when talking about cancer the terms and names can sound like a different language, that its ok to tell people that I'm in a bad mood and they need to leave me alone, that hospitals charge way too much for parking, that blueberry coffee is horrible, that I have the most amazing group of friends that a girl could ask for, that my marriage isn't perfect but its solid and stable and will last the test of time, that I am so thankful for my husbands medical benefits, that I appreciate things that many people overlook, that I count my blessings every single day, that I never gave myself enough credit, that I am a control freak and I set the bar really low for the people in my life.
The list goes on and on.... I learn something new everyday.

Am I planning on adding any more kids to my family?
Planning.... no. Hoping...yes. Because of my infertility getting pregnant is nearly impossible and its very expensive so its not something that I can just pencil into my agenda. I go back and forth about wanting more children. By the time I have any more babies Nick will be gone to college and my youngest will be in school full time. But I think about the "what ifs"... what if the cancer comes back..... I dont want to live in the negative and theres that saying "what you fear you create" factor.

What are my future plans?
I dont have any! Who would have thought that eh?!
These past seven months have taught me that I cant plan for everything and that I need to release my grip a bit. I have some thoughts about what I'd like to happen... home renevations, some extra curricular activities for the boys, Nick's make a wish trip to Texas for "real" steak and coasters at six flags. Celebrating my tenth wedding anniversary and getting body into a healthy place. I have lots of thoughts and goals but no real plans.

So there ya have it.... some answers about me... all of which you likely knew already.

Oh I almost forgot - for the person that wanted to know what I eat for lunch.... most days its a lean cuisine frozen meal that's been cooked and then forgotten about in the microwave lol

So This Has Been Happening.....

Another week has passed and things continue to go well. Nick's levels have remained steady and despite his appetite pretty much being non existent, thanks to my "magic" shakes his weight has been maintained too.
Yesterday marked a great feat for Nick and a very proud moment for me. Nick suited and laced up and worked with a goalie coach who was unaware that he had cancer. With the exception of needing to rest because of his heart racing he was amazing.
The other boys are all doing good too. Maxwell is loving pre-school and has become a social butterfly. My shy and anti-social mama's boy is now making friends, humming little tunes and is even busting out the occasional self taught karate move for the amusement of strangers. On a fantastic note we FINALLY got a surgery date for his myringotomy and tube placement surgery in hopes of repairing his 80% hearing loss.
Kurt is doing great at school and today I registered him for basketball which is something that he has wanted to play for a while. This program is not specifically geared towards children with special needs so I dont know how smoothly things are going to go but if we dont try then we'll never know. I'll admit that I am really nervous about him playing with developmentally at par children, oh the situations that I can invision arising....... But I suppose if I want to see my children fly then I first must be willing to watch them leap.
Riddick is struggling with his life skills and is making poor choices resulting in him being repromanded more then usual. Most often even setting expectations of a four year old are too high for him and he is certainly testing my patience as a mother. Its trial and error and I have used every tactic that I have, I've called in behavioural therapists, consulted with the pediatrician, started medication, attended workshops, used IBI/ABA techniques, positive reinforcement and negative consequence. I am at the moment out of ideas but I know that eventually we will find the magic key that will unlock some fantastic gains for Riddick and until then we will just keep trucking along. Riddick also has an upcoming appointment with the eye specialist to see about treatment options for his worsening nystagmus and strabismus, maybe better vision will be the start of improvement.
As for me... well I've been pretty busy myself. I've lost a couple pounds and worked on developing some style (which is harder then I thought it would be). I've participated in a review from the parental advisory board of POGO in hopes of improving pediatric cancer care, assisted in a university students research project about blogging and cancer, have been brainstorming how to better promote my company www.treasure-beyond-measure-photography.blogspot.com and most recently was interviewed by a reporter with the Toronto Star about my thoughts and feelings about the notion of IVF treatments being refused to overweight women http://www.thestar.com/news/article/1057248.
While life is not great it is better then it could be and so each and every moment of each and every day I count my blessings. This blog was started as a method of relaying to friends and family what was happening so that I wouldnt have to retell the same story over and over and hopefully maintain my emotions but its become so much more. I never would have imagined that strangers would want to read about my life as there are many others with lives more worthy of being converted to text then mine but yet my words are read in multiple countries everyday.
I am always thankful for the messages of strength, praise and love and I feel very touched that so many people have reached out to me. I'm not a superhero I'm just an average girl who lives a not so average life and this blog has made me feel like there are so many people rooting for me and wanting to see positive things happening in my life and the lives of my family. Since things are going well for us I am hoping to lighten the mood of my next blog post so lets play a little game of ask Cassandra. Send me any question that you would like to ask me and my next blog entry will answer them all!

Until next time;
Cassandra
nkrm@live.com

Throw The Raft Or Pray For A Miracle

After finishing my coffee this morning I gathered up Maxwell and headed out the door to get Nick and head off to radiation when I was greeted on the walkway by a lovely woman and her two small daughters.
They dressed in beautiful pink Easter-ish jackets and the little girls sported blonde pigtails. I knew right away that the woman was there to teach me about the "real" God and her girls simply tagged along.
I polietly said that I needed to leave and told her the reason to which friendly and interesting conversation began.
She asked some questions about Nick and about how treatment has been so far and then told me that she "admired my bravery" as she could never do what I am doing. Of course you could if you had to I replied but she simply shook her head to disagree. She explained that her belief is that either God will produce a miracle and spare her child or he would give her the strength to understand that he must take her to be with him for all eternity.
My eyes immediately shifted to these two sweet girls no more then four years old and I couldn't help but ask so if there was a treatment which would save them you would rather let them die?
She told me that the treatment could potentially cause more cancer in the future and would rob them of their ability to create more of gods children.
Her logic and thought process astounded me, I couldnt even imagine my child escentially drowning and having a life raft in my hand only to keep it to my self and hope that God would swoop in and work a miracle. Maybe the miracle is the doctors, the science, the human bodies ability to handle disease & treatment and still recover..... Maybe one persons miracle is different then another.
We said our good byes and went on our way but my mind was still swirling from our conversation. On one hand I thought this woman was nuts but on the other her faith overwhelmed me.
I suppose by default I am catholic, I was baptised, had my first confession and communnion, I was confirmed and only ever attended catholic school but I cant say that I am a faithful follower.
I was married in the Salvation Army church but again didnt feel that I fit in. Desperate to know what religion I am meant to be at one point I even took an on-line test and my results indicated that I should be Quaker..... I dont know about that one.
I have beliefs and a huge spirituality but if told to go to church I would simply be wandering around aimlessly.
Much to the amusment and annoyance of my family I enjoy watching Joyce Meyer on tv. I couldnt tell you what religion she ministries to but she seems so normal to me, often complaining or joking about misunderstandings with her husband and even on occasion letting a swear slip accidently.
Its there, the foundation for belief but it needs to be nurtured and developed or maybe it will be an abstract internal feeling for the rest of my life leaving me with no ability to outwardly be a part of any religious group.
Despite my inner beliefs or outward longing I dont think that I could ever trust God enough to be in total control of my childs life when I know that there are real world solutions, or at the very least treatments.
I don't know if having such intense belief is brave or stupid but whatever it is I know that I don't have those characteristics and I dont know if the feelings that I have for those who do are envious or pitying but to each their own.

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.

The Journey Continues...

This past Tuesday we met with Nick's oncologist to learn the results of his latest scans, these scans would tell us how successful the chemo is and if he was finished with treatment.
From all previous conversations everyone was confident that this would be the end because Nick had been classed as a "rapid responder" but sadly this was not the case.
The scans indicated that Nick's tumors have not shrunk enough, especially the ones in his internal organs and therefore he must move on to radiation as he has completed the dosage of chemotherapy that his particular cancer diagnosis calls for and anymore could result in over toxicity.
The tests did show that there are no new cancer cells and the ones still in his body are no longer "active" and rapidly dividing so I suppose that is good news.
This isn't really a step backwards but it feels a bit like it because we were hoping to be done treatment, to be in remission, to enjoy the rest of the summer and look forward to the start of grade 10 back in high school but instead we are now going to  be doing radiation instead of vacations and the first semester of school will again take place at home because his immune system remains compromised for 6 months following the end of treatment.
Yesterday wasn't a good day for me emotionally, the only way to describe how I feel is like this.... everyday its like there's a little whimper inside of me and for the most part it stays that way, quiet and subdued just an internal emotion that's easily overlooked but every once in a while that whimper decides to lose control and turn into a full blown scream - Its during this time that I feel deflated and fearful, that I accept that this is now our life and that no matter how put together and organized I come across, underneath I am at times out of control and filled with negative and ugly thoughts. Its during these times that I admit to myself that odds dont always work in our favor and that positive thinking doesnt cure physical ailments. Its during these times that I wonder if God listens to prayers from someone who is really angry with him and its when I wonder if I will recognize within myself if things get to the point where I am not coping well enough to be a good wife and mom... will I neglect my family without noticing because I am caught up in my own emotions..... The thoughts are like a hurricane in my head.
After posting the test results and treatment plans on my Facebook profile I found myself annoyed and irritated with the amount of "congrats on the end of chemo" replies that were being posted.
I thought, can they not read, do they not understand .... Nick is done chemo because he CANT have anymore safely so instead they are going to blast him with radioactive waves - what part of that is reason for congratulations???
I read on the report "minimal to moderate shrinkage of the nodules as compared to the first scans" - those words certainly don't make me want to high five anyone.
I know that my friends and family love me and want to celebrate the positive steps... even the tiny baby-steps but my emotions got clouded for the moment.
I was confused and angry, I felt lied to by the doctors with their 60% shrinkage blabber. Their calculating method makes for some misunderstandings, how they do the math is they measure all of the tumors/nodules and then come up with an average figure by combining all of the measurments, they then do this again after the repeat scans and then compare the two results. Seems simple enough right? What they dont tell you is that if there are very large nodules in an isolated area those individual spots can come down in size while the others dont move much. This was what happened in Nicks case.... the softball sized nodule on his clavicle shrunk considerably but the ones in his torso only shrunk slighly but because the calculations are averaged out it sounds as though there was 60% decrease in the cancer overall.
I asked what happens when he is finished radiation if there are still nodules and the answer was - nothing.
We then just watch with follow up visits to see if they again become active or grow resulting in a relapse and then we start all over again.
I wonder how we are ever going to function normally with possible time bombs throughout Nick's system just waiting to detonate again .... or not.
While at the clinic I spoke with the social worker whom I adore, there is something about her that makes her feel more like a friend then a clinical professional.
We talked about Nick's wish and if I've started planning it yet and we also talked about my photopraghy.
She took a look at some of my work and asked if I would be willing to send copies to POGO (pediatric  oncology group of ontario) to possibly use in their cancer awareness campaigns. She also asked what I thought about maybe joining an organization called Now I Lay Me Down To Sleep which photographs stillborn babies and terminal children.
Photography is something that I have always loved and enjoyed doing but I've never really had anyone tell me that I was good enough to perhaps do something on a more professional scale until recently - I'm intreagued by the possibility but am certainly not going to dive into some cockamamie business venture only to fail horribly. I think that investing in a professional style camera and maybe some classes at the local college may be the best way to start off.
So now summer is here, the kids are all finished school and I am very proud of how well they all did.
Kurt has graduated from IBI (intensive therapy for autistic children) and is entering the regular school board in the fall, Riddick is doing better and won the most improved student award, even with a hearing impairment Maxwell is communicating above our expectations and while battling a debilitating disease which left him sick and sleeping most days Nick managed to obtain his science credit.
All of my children have an internal strength that leaves me in awe, give them a hurdle and they will leap over it without question, nothing stops them, nothing gets in their way.
Like little lion tamers they have the ability to harness my scream and return it to the little whimper from which it came so that we can resume our "normal" lives.... whatever that may be.