Cannon Ball Summer

Holy cow its been a while since I've blogged, if I'm being totally honest I forgot that I even had one.
Since my last update life has been pretty good. The boys are all thriving and things are calm and happy.
Summer is coming and we have been getting ready for that, one of the things that the kids love to do is jump into the swimming pool. While its fun for them, its terrifying for me... watching them try and balance on the top of the ladder as if they are in the circus. Dom has some time off work so he built a deck around part of the pool. I'm really happy with how it turned out and the kids are getting impatient waiting for the pool to warm up so they can practice their cannon balls safely.
Our house renovations are starting any day and its going to look fantastic once its all done, we are already planning our post reno open house (yes that's how eager we are!)
Over the last few weeks Dom and I have made a point of focusing on our marriage, its been a while since our family's last crisis and it was time to get back to basics... date nights, back massages, mushy text messages and simply being present for each other. For years we have been like ships passing in the night and that's not the example that we wanted to set for our kids. Nick has started dating and I want him to have a good understanding of what a quality man is and how a woman should be treated.
I have to say, its nice to write an entry that isn't all doom and gloom and full of wishes for better things.
The better things are happening.

 

Let Me Fill You In

Today is Easter Monday and since its a long weekend all my kiddos are home from school and the routine has been thrown to the wind. Today would be a good day to update the blog which I've been meaning to do for ages.
Nick got his scan results back and he is still in remission! The chemo and long time vomiting did cause a lot of damage to his teeth which we are now repairing (poor kid - I am the biggest dentist wimp so I'm not a very good support person lol)
He has also made some pretty interesting and fun life decisions. After graduation Nick is going to Ecuador on a mission trip to volunteer with the street youth. Humanitarian efforts have always been something that has interested him so I'm glad that he will get to fulfil a goal. We have also decided that he is old enough to finally get some answers about his nationally.... you see Nick's birth dad was placed for adoption as a baby as was his (dad's) birth mother.
Two generations of adoptions makes for little accurate information.
Nick is often asked "what he is" because of his dark complexion and features.... we've been told french but he could pass as a large number of different ethnicities. We've found a lab that specialized in DNA for this exact purpose and it isn't as expensive as I'd assumed which is good because money in our house is now something of the past for a few reasons.
1. We got the renovation loan and we'll be starting the upper level renovations anytime!
I am so excited, its been a few years in the making and I cannot wait to see the finished product. My vision is a spa like tranquil place that is helpful with calming the mind and spirit. Lots of white with accents that sparkle and shimmer, hints of plum shades and textures that are soft and inviting. I know you are thinking "white... is she nuts" - the answer is yes I am a bit crazy but I am looking at things that are very washable.
2. Maxwell saw the allergist and is allergic to quite a few things. The list was wheat, yeast, oats, nuts - combine that with his primary lactase deficiency and his diet is less then convenient.
What we were told was that when he consumes these foods the walls of his colon get inflamed and can even blister resulting in stomach aches, bathroom trouble and an inability to absorb nutrients. The term that the specialist used was eosinophilic colitis.
He is now on a gluten/yeast/nut free diet and can only consume dairy after he takes a special enzyme. Its a doable diet but it takes creativity and its far from cheap. We know that we have found the answer though because since making the diet changes and taking medication for his JRA he has gained almost 2 pounds and had grown 3 inches.  He now sleeps soundly and cries much less.
Kurt and Riddick have started swimming weekly and are still doing very well, their lives are very consistent and routine and that's how they thrive best. I am curious to see how they cope with the renovations since change is challenging for them (especially Kurt) but I am sure that the thought of a new and fancy toy room is going to ease the transition.
Well.... that's all for now... I'll make it a priority to be back soon.

I'm Itchy

I've got the itch... the itch to do something.... anything.... the winter blah's are finally getting to me and I am starting to feel myself cracking.
This is normally around the time when I feel the need to do something different.... tattoo's, new furniture, new vehicle, another round of IVF - BAH just ANYTHING.
I am hoping that our renovations will help ease the boredom because if I am being totally honest its gotten to the point where I found myself considering a consult with the dentist about some veneers to create a perfectly straight set of pearly whites when I smile (since I refuse to be 31 with braces).
Life for our family right now is wonderful. Maxwell's biopsy results showed that in addition to his primary lactase deficiency he has non-specific colitis and elevated eosinophils which basically means that they are pretty sure that he has an allergy to something that is a main staple of his diet. We are returning to Dr O who is the allergist that discovered his heart problem for some testing to find the source. I know that he is in good hands.
Max has also been registered to start kindergarten in September - where has the time gone?!?!
Nicks CT scan is in a couple weeks but he's been feeling good and doing well so I am confident that things will be a-ok with him. He seems to be more dedicated to school and has a better over all attitude and he seems to no longer be living life like the cancer is coming back tomorrow.
Kurt and Riddick are still doing really well in school and Riddick can now read!
He is not overly confident in his new found skill but its there and its only a matter of time before he will be eager to show off his ability to anyone who will listen.
So you see life is good and while its still busy its not chaotic, there is time to be social and have friendships, for Dom and I to have some romance and make our marriage a priority.
And maybe just maybe allow me to blog about things that aren't kid and medical related -GASP could you imagine???
Stay tuned..... who knows whats next! 

He Found His Inner Ninja

I am exhausted! Today was mighty long but it was wonderful.
Thanks to the Children's Wish Foundation Nick was presented with the opportunity to have some fun and do something nice for himself after a couple of rough years.
I remember back to his birthday right after his diagnosis when he changed his mind about getting the shoes that he wanted because the only place that he would be frequenting was the hospital - it broke my heart, but today the boy is sporting some fresh kicks and he's got more then just one pair.
Today he took a shopping trip to Mapleview Centre in Burlington and it was a great day.
The staff were beyond friendly especially AnnaLisa at Foot Locker, Hannah at Turtle Jacks and Cody at Lids. The mall smelled of popcorn from Kernels and its almost like the music was a soundtrack specifically for Nick (which it obviously wasn't lol) - I think in almost every store that we went to Classified's new song "Inner Ninja" was playing which I thought was quite fitting as it's reminded me of Nick since I first heard it.
We were treated to lunch at Turtle Jacks and it was great to see Nick smiling and eating and so relaxed, its been a long time and it really warmed my heart.
One of the things that Nick likes from that restaurant is Deep Fried Pickles (which are actually very tasty)
Being a team player today Dom even had one (close your mouth I know its shocking) anyone that knows Dom in real life knows that he's no foodie and his meal of choice is (say it with me now) a bacon cheeseburger and fries - I was glad that he tried it, tried something that Nick likes, the start of some commonalities.
We shopped for hours and Nick now has more clothes then the Kardashian sisters combined and he isn't done yet. There will be more shopping in his future as even with financial freedom he looked for the best bargains (except for in Swarovski.... he takes after his Mama lol)
I'll admit it there was a moment over lunch, a fleeting moment where I was sad. I was sad that my child had to experience so much to have this day. That not that long ago we were buying hats to cover a bald head instead of buying them for style. The moment passed quickly and the retail therapy was back underway, I think that today I saw Nick smile more then I have in the last 2 years combined.
Mission accomplished Children's wish and Mapleview... Mission accomplished! 



Click here to hear "Inner Ninja" (with lyrics written) - Its not a song meant for beating cancer but it certainly makes me think of Nick when I hear it!

What A Pain In The A**

My house is quiet today, Nick is at his Nanny's house, Kurt is having a visit with his birth mom, Riddick is playing with lego and Maxwell is swimming in the tub. The smell of Butter Pecan cake is wafting through my house and my stomach rumbles every time I inhale.
Its been a crazy couple weeks to say the least so I am enjoying the slow pace that this weekend has brought. Our chaos started two weeks ago, it seemed like Max had never ending appointments. One of our appointments happened to be with Rheumatology. I debated for days prior about cancelling, I thought whats the point, we ran the autoimmune blood work and it came back fine, this is a huge waste of time.
I reconsidered and decided to just go, and I am glad that we did.
Dr Tanya was wonderful and was so child friendly (imagine that in a children's hospital!) - she sang and played games and made the physical exam/assessment fun. She was also familiar with Max's medical history and had looked at his previous blood work results. As it turns out this appointment was going to be a giant leap in the right direction. During her assessment she noted that Max has inflammation in five of his joints, both elbows, both ankles and the pointer finger on his left hand. She also pointed out that similar to his chest abnormality he also has bony abnormalities of his knees which seems to be painful for him (In 3.5 years I have never noticed that). We were sent off for x-rays and more blood work and in the end he was diagnosed with Polyarticular Rheumatoid Factor Negative Juvenile Arthritis. He was started on anti-inflammatories and we will be seen back in clinic in six weeks to discuss the x-rays and how much we should adjust his medication. This diagnosis explains a lot of Max's symptoms, often times kids with JRA are anemic and have eye inflammation and stomach/bowel problems.
Because of that the doctors were all in agreement that we should move ahead with the colonoscopy.
I was forewarned that that prep for the colonoscopy would be the worst part but thankfully Maxwell breezed through it and it was mostly like any other day.
The morning of the scope we arrived at the hospital and checked in and our fantastic nurse got all of our registration stuff done. When it was time the doctor came out and explained the risks and I had Dom sign the consent forms because I was holding Max. Dom was quite uneasy with this, the risks are low but he was quick to remind me that our kids always seem to fall into the percentage with complications.
We were both able to go into the room with Maxwell which is unusual and we got to snuggle him while he fought the cookie scented gas that lulled him off to sleep. We were told it would take about 20 minutes and so we took a bathroom break and grabbed some coffee before heading into the waiting room. Twenty minutes turned into and hour and I was hoping that Dom wasn't watching the time. When the doctor came out we were called into the small consultation room to chat. She started the conversation with initially things looked normal, but that's when the conversation took a turn. She followed up her statement with but once we rounded the last curve of the colon we found a large bleed, we backed out and noticed that his colon was looking pretty inflamed. She then let us know that they had sent Max for x-rays to check for punctures, and blood work to check his hemoglobin because he may need a blood transfusion. He would be admitted to the hospital while they got things under control. Once in recovery we were told some basic things about the procedure, that Max's colon has lots of nodes but they aren't concerned because his stomach and neck have enlarged nodes too which can be attributed to the JRA.
They also said that they didn't take many biopsy samples because he was already bleeding so its likely that our results (if any) will be limited.
Thankfully we only required one nights stay at the hospital and Max was able to avoid any transfusions so all in all things were scary but worked out alright.
The confusion for me/us stems from the different doctors having different opinions on what happened. The doctor that did the colonoscopy was a colleague of our GI doctor (whom you all know I don't like lol) - she was very shaken and actually said words like "more blood then I've ever seen", We were also closely followed in recovery by many different doctors who quickly swarmed every time Max passed gas to make sure that he wasn't hemorrhaging and refused to take him off NPO status and allow him to eat just in case he needed to go back to the OR.
After a few hours our GI doctor came downstairs, he as per usual was quick to dismiss what happened as anything problematic and said that the bleeding was likely caused by the colon rubbing on its self as the camera navigated through, now I'm not going to be bitchy enough to say that he's full of crap but what I will say is that his statement caused the rest of the medical team to roll their eyes and despite hours of googling from the hospital bed I have not found anything that backs up his statement. For whatever reason this man refuses to admit that maybe just maybe there is problem and he dismissed my previous concerns. I don't know if its ego or what but a child could be on fire in front of him and he will call it a minor burn - its frustrating to say the least.
Now we wait for the results of the biopsy. My hope is that if there is something that needs management its able to be done from a rheumatology standpoint vs GI because then we can close our file and dwindle down our list of doctors. The goal is for Sick Kids to feel that Max is medically stable and then they may be comfortable moving forward with the heart repair sooner then later. In the end a childhood as close to normal is all that we want for him (and all of our kids!)

Equation Of Our Life

Christmas is in two sleeps and I think that I am ready! Presents are wrapped, food shopping is done and holiday meals have been planned.
The boys are amazingly excited for Christmas and I love seeing how festive they get. This year we focused on donating to the Salvation Army kettles and we selected a few children from the Christmas tree at Walmart. We donated our outgrown winter coats and also made a donation to the flooring fund at the church that runs Maxwell's preschool.
I want my children to love the feeling of GIVING more then the feeling of receiving. 
I'm actually quite pleased that I am on top of the ball because the last week has  been a bit crazy.
On Tuesday we received Nick's latest scan results and since he hasn't been in six months I will admit that I was nervous. Nick is still classified as being in remission and on December 20th he celebrated his 1st anniversary! The scans did show that the nodes in his abdomen are still large but they haven't grown. CT scans measure size and shape but they don't show active cells. Because of this in March when Nick has his next check up we will likely do another test that shows if there is anything brewing inside the nodes where the CT cant see. The oncologist is confident that things are good but just to be on the safe side its worth checking out. On Wednesday a little after 3pm I got a call from Maxwell's pre-school teacher, she let me know that he woke up from his nap complaining about "his heart hurting", they took his pulse and it was low so they gave me a call. I went to get him and he was saying that his breathing was "tricky" so I decided that a call to the doctor was in order. I wasn't surprised when they sent us to the ER.
The ER doctors pulled up Maxwells previous ECG and chest X-ray and decided to repeat the tests for comparison. The ECG showed "some changes" and the x-ray showed that while the heart was still the same size an area now looks "fuller" which likely means that there is some accumulated fluid. They decided that given the description of what happened and the changes to the tests they should do some blood work to check for heart damage. The test results came back normal so the doctor said that while we couldn't say for certain what was the cause of this "cardiac event" he was confident that there wasn't any lasting damage to Max's heart. He did say that the cause of the fluid pocket is likely that Max picked up a virus due to it being cold and flu season - especially since he goes to pre-school. We discussed Maxwell's attendance and he said that unless he has to be there because there is no other option he wouldn't recommend it. And just like that Maxwell's preschool days were over. He attended the exact same amount of time that he did last year before having to be withdrawn.
The doctor felt that Max wasn't in clinical heart failure at the moment and so this was no longer an ER issue Our instruction were to be seen in clinic by our regular cardiologist within a short amount of time and to return to the ER if there are any issues in the meantime. Maxwell will now go in the beginning of January for a repeat ECG and a check up.
For us life at times is like three steps forward and two steps back, living life like that can be frustrating at times but despite being no genius I still can calculate that with that equation we are still one step ahead - which is good enough for me! 

A Horrific Reminder

On Friday the world was again rocked as news of the Sandy Hook Elementary School massacre spread. In the end 26 lives were lost most of which were children. Hero's were created and assassinated simultaneously and the lives of millions were altered in a split second.  Images of screaming parents and weeping law enforcement will yet again be engrained in the minds of many.
For a moment I allowed myself to think of the what ifs... what if it was my child.... but I quickly let those thoughts go, they serve no purpose, they only create fear and anxiety.
Yesterday is history, tomorrow is a mystery, today is a gift that is why its called the present - no truer words have been spoken. The truth is that none of us are invincible and life can be altered or lost in the blink of an eye which is why we have to make every moment with the ones that we love count.
I am not a perfect parent (for the record I don't think that one exists) but I try everyday to let my boys know that they are the best thing that has ever happened to me. Some may say that I coddle my children and perhaps they are not wrong but I prefer to think of it as making them a priority.
I gush over horribly colored pictures, kiss and rub non-existent boo boo's, allow a fear filled child to sleep in my bed, sing you are my sunshine a thousand times a day and even listen to Disney soundtracks in my cool car lol. I ask my teenager about his friends, interests and goals and I tell him that I love him and pretend that I don't notice the eye rolling that occurs.
My husband and I end every phone call with I love you and while it may now be routine and expected I know that should God forbid something happen to either of us those three words were never left unsaid.
Tomorrow is not promised its just merely hoped for, anything can happen.... illness, accident or something more sinister but the end result remains the same.
Take the time to make each day count, say what needs to be said, if you have to stop and think about the last time that you intentionally said or did something kind and loving then its been too long.
Put in the energy to create a love that will long outlast the body, one day regardless of circumstance it will be all that is left.
There is never a doubt in my mind that those that I love know it.... they feel it, their worlds are better because of it and mine because of theirs. When I am on my death bed I am sure that I will have a lot of regrets but I guarantee that dancing around the kitchen with my boys while some Christmas cookies burned in the oven will not be one of them.

You are my sunshine, my only sunshine, 

you make me happy when skies are grey, 

you'll never know dear how much I love you, 

please dont take my sunshine away