Loving life four years later...

April 1st, 2017

April 1st will always be the day to reflect on your journey and remind ourselves of what you have endured, how you conquered and your incredible strength. Four years ago today we received the worst news ever, Acute Lymphoblastic Leukemia and your life has forever been changed because of it; however, now, the word leukemia means triumph, overcome and battled.  It has changed who you are by giving you the super powers to not only win and battle the disease but to continue on living each day to it's fullest.   

This past year you have continued to grow and mature.  Where I once saw a young boy, curious of the world around him, I now see a boy taking every chance he can get to discover all that he can.  You love to be outside riding your bike/scooter/wiggle car, helping dad, playing street hockey with the neighborhood kids or just getting into mischief.  When it was cold in the winter you were often convincing someone to play mini sticks in the basement with you or taking slap shots in the garage.  It is obvious you still love hockey, but you still did not want to play ice hockey this winter and decided to give ball hockey a try.  You were not really impressed with ball hockey, as it wasn't set up with teams and it was more recreational then you were expecting.  With the ice rink set up in the backyard for a few months, you took advantage of the skating opportunities and have become a good little skater.  I am hoping it has built enough of your confidence that you feel "good enough" to play ice hockey next season and if not, we find something else that can keep you active.

Your health has had no real hiccups this past year.  We continue to visit the long term survivor clinic every 6 months at the Children's Hospital in Calgary.  This clinic is great and very informative; however, it is difficult to hear the long term side effects that could face in your future.  There are a lot of questions regarding your behaviour and learning due to the fact that you had chemo at such a crucial time of brain development.  We will continue to monitor your progress at school as you progress through the grades.

The last couple of months you have had some real questions regarding your journey with leukemia.  It has always been something that we have talked about in general, but not in great detail.  Your dad decided that it was time to start reading this blog to you and this has been really successful.  Although we are going back to a time that was very difficult for us, seeing it through your curiosity and questioning eyes makes it a bit easier.  It is crazy to hear some of your questions and how much you understand from it all.  A blog that at the time was a coping strategy for your dad and I during a time we didn't fully understand has now become a tool to help you understand your battle.  I can honestly say four years ago I didn't see it that way; in fact at the time I was only dealing with one day at a time and now we can share it all with you and celebrate where you are right now.

I am hoping that I don't have to update the blog for another year and our new normal continues.  Everyday I am thankful that you continue to grow, thrive and love life.  Another year, another reminder that life is so precious.

Love you to the moon and back,

Mom

Here are some pictures of you enjoying life this past year.

Where we began...

April 1st, 2016

3 YEARS!!  It is still hard for me to believe that it has been 3 years since the day Leukemia and cancer were introduced to our family and we have been changed ever since.  This day is always so hard for me to understand.  It is definitely a day to celebrate that you have beat this horrible disease, you are cancer free and living life but the day also makes me reflect on those really dark days, just 3 years ago.  Those days changed who I am, what kind of mother I am, how I chose to live life and most importantly that I will never take anything for granted again.

Your life now is more "normal" than it has ever been since being diagnosed.  You had your last appointment with your Oncologist, Dr. Anderson, in March and all your tests came back great, which still to this day is a huge relief.  Even though this was your last appointment with Dr. Anderson it doesn't mean you no longer go for check ups, it just means that you will be going to the long-term survivor clinic at the Alberta Children's Hospital.   I like the saying, "long-term survivor" it is a label that I can agree with and another step in your journey to beating cancer.  You will be going to the long-term survivor clinic every 6 months to see a new Oncologist, get blood work and occasional tests.  If there was ever any concern with you blood work or tests your new Oncologist would consult with Dr. Anderson.  We will be going in September!

These days you are a going concern!  You love playing outside in the yard, playing street hockey, bike riding, helping dad and getting into trouble :)  The nice spring weather has been helpful to get all your energy out.  You are in Kindergarten and Preschool at St. Patrick's school and you are doing very well.  Again, you are going to do soccer this spring and you can't wait to get out onto the field.  This winter you opted out of hockey and spent most of your time watching your sisters at the rink and hanging out with your friends there.  You love to play hockey, on the street or in the garage but the skating thing is still hanging you up from playing on the ice.  Who knows what this fall will bring and what you will decide to do.  I know that you have mentioned break dancing so perhaps you will continue down that road.

We are seeing a few "problems" creep up or intensify lately and your dad and I have sought out some help for you as well as us.  It is believed to be trauma related from your time in hospital and possibly the chemo meds messing with some of your brain development.  Whatever the cause we are open with the fact that we needed some help and are seeing great gains.  Nighttime is your hardest time of the day and you often end up sleeping with us, which has been a problem since we have been home from the hospital, but lately you have been sleeping with us more and more.  You require a lot of light to fall asleep and will often need multiple lights on and you now need either dad or I to be with you as you fall asleep.  We will continue to support you and our family as we continue with your journey in any way that we can.  We are just truly thankful to all our family and friends who continue to support us through everything.

I know that the blogs have not happened as often as they use to.  I hope to update more this year and keep you up to date with your appointments, etc.  I am hoping in the next couple of years you will be able to read all the blogs and understand the journey that you have been on.

I love to report that all is well.  It is truly a time to celebrate as well as remember where we have come from.  Your dad and I couldn't be more proud of you.

Love you to the moon and back,

Mom

Some pictures of where we started...

 

 

 And this past year...

  

  

Oh, the places you'll go...

The last time I posted it was marking 2 years since your diagnosis, which seemed crazy, as I feel like it was years and years ago.  There are days that pass now and I don’t even think about when you were sick or how our lives were so different.  Our new “normal’ is the normal!! 

Today is a very exciting day as it was your first day of Kindergarten; what a milestone and celebration!   You are so excited to see your new teachers and finally be at the “big kid” school with your sisters.  This first day of Kindergarten was met with a few tears from me; it is hard to see my baby go off to Kindergarten.  I can’t wait to see how you'll grow this year.

This weekend we celebrated your 5^th birthday.  I can’t believe you are 5!!!  Every birthday we celebrate will always be a treasure and I will never forget that.  

  

This summer, however, we were reminded that we are still on a journey and there will always be something that brings us back to what you went through.  This July, you were in Calgary to have dental surgery.  We knew that your dental health would probably be affected from the lack of brushing during the time you were in the hospital, especially when dealing with the dreaded mouth sores and then also from some of the chemo medications you had to take.   Needless to say, you had 14 cavities that needed to be taken care of and having you put to sleep to do all the work at once was the best plan.  Of course, you weren’t too happy to have any work done and would also have to miss a day of summer holidays to go to the dentist.  However, you were a trooper and handled everything like a pro.  The dentist called the next day, concerned about the amount of work they had to do and wondered how you were doing as a result, and they were surprised that you were up and playing the next day.  I wasn’t surprised, you are still my superhero!

Later in July we had a checkup with your Oncologist, Dr. Anderson, in Calgary. He was very pleased with your blood work as well as your physical checkup and he is impressed with all the progress that you have made in the past year.  He explained to us that you now will be going to the long term survivor clinic, which is still located in the Alberta Children’s Hospital.  Your appointments are going to be every 6 months, which will save us many trips to Calgary. 

We are looking forward to fall and returning to our routines and schedules.  The weather is still beautiful so we are taking advantage of the outdoors, especially to burn off all your energy these days. 

Love you to the moon and back,

Mom

**Just a few days ago, another precious child, Dominic Rooney, was taken too early from this horrible disease.   It is so unfair that his parents won’t have their little one to hold close or see grow up.  Our prayers and thoughts are with the family as they prepare to find their new “normal” but without their precious son.  Please consider donating to the Extra Life charity, in Dominic's name, which benefits the Alberta Children’s Hospital at http://www.extra-life.org/team/dominicstrong.

A favorite picture of mine when Kallum and Dominic had a chance to meet.

It's no joke...

Wednesday, April 1st, 2015

Today marks the two year anniversary since you were diagnosed.  I don't know if that is really an anniversary, as we usually celebrate anniversaries but April 1st, 2013 will never be forgotten by your dad and I.  It is more of a day to count our blessings, give you an extra hug and cuddle and remember what you went through and how you not only survived but kick cancer's butt!

March is still a difficult month for me and I know that as the years pass some of the old feelings will start to fade, but two years later and I still feel some of the old memories come back.  I am reminded by the signs of spring as well as the preparation for Easter.  Usually these are times to be excited for, but I still struggle to look forward to these signs because spring 2013 was the worst time of our lives.  I need to remember that we are past all the bad times and if I need to start recognizing the future rather than dwelling in the past.

Today, if anyone would look at you they would never guess what you have lived through or even better, SURVIVED through.  Your boundless energy and passion for life is how you live life everyday.  We know that you are getting your strength back and can keep up with the kids your own age.  Soccer season is starting again for your sisters and no matter how much I tried to convince you to try another spring sport, because soccer requires strong legs and endurance, you are set on playing.  The other day you had all your soccer gear on and wanted to know how many days until soccer starts, I love you enthusiasm and now you will be an amazing soccer star!

This January you had your appointment in Calgary where they completed all the regular tests, MRI, x-rays, ECHO, ultrasound and of course blood work.  All your tests came back clear!  You still need to have an appointment in Calgary every 3 months, but you will only require an examination by your Oncologist and blood work, no more big tests!  This is a huge milestone for you and I love that you will not have to endure the days of waiting for all the appointments.  However, it feels like a security blanket has been ripped away from me.  There is a part of me that awaits the results and is assured that all is good, hopefully the blood work is enough to elevate some of the anxiousness.

We will continue on your journey with you.  Right now, you refer to "having cancer" as a temporary illness that you had and overcame and it is the only reason why you have to have a needle every couple of months.  I am glad that you were too young to have any memories of the "bad" and simply see it as something that marks a time in our lives.  I pray everyday that it stays this way for you and that you will never have to relive any of those experiences.  We are truly blessed and I will never take life for granted again.

Love you to the moon and back,

Mom

What a change 2 years makes!

       

Here is a picture of you and dad out for a bike ride.  You are loving the spring weather!

A roller coaster ride...

I know that it has been awhile since I updated, but we had been going along feeling pretty "normal." In fact, your blood work in November, came back at the best it has been since you have been diagnosed. We were excited to see your body improve yet again, it just reassured us that you are strong!

However, just after your November appointment at the Cancer Clinic, you presented with a fever. This would be your first fever in the 13 months since finishing chemo; which means we can treat you at home and don't have to go to the hospital. Of course, your dad was out of town and I was pretty nervous and unsure of the situation and of course a lot of old memories came flooding back. It was hard seeing you sick again, I couldn't help but go to the worse case scenario.  You fought the fever for 3 days, but it did finally go away and we could take a deep breath again.  Your dad and I talked a lot about how this is our reality and that we need to realize that you are going to get sick and getting sick is part of being "normal."  It is hard to describe in words the internal struggle not to over react and think the worst right away, it is something we have to get "better" at.

Things went back to "normal" after your fever.  You were back at school, enjoying the preparation for your Christmas concert.  However, only a few weeks after your fever, you started to get sick again.  It started with a dip in your energy and occasionally getting sick after you ate.  Your symptoms seemed to get worse, however you recovered each morning.  Everyday was a roller coaster ride with the day starting on a high; bugging sisters and eating breakfast and then by lunch time you would just crash.  At this time, you would complain of stomach pain, sometimes actually get sick and sleep.  You wouldn't eat and weren't interested in anything, but sleeping.  This happened a few days in a row and your dad and I had just reassured ourselves that this was going to end quickly and that you were just going through something.

However, after a few more days your dad and I both were feeling something just didn't feel right, after all this was the exact pattern we saw before your diagnosis.  You would have periods of energy throughout the day but also the very low periods when you would just sleep.  Of course, we finally decided that we had waited long enough and needed reassurance that your blood work was what it needed to be.  I spent last Sunday in the emergency getting blood work and a check up with the doctor.  You were dehydrated and the doctor gave you some meds to help settle your stomach so we could get some fluid in you.  The doctor was stumped at what it could be, but thankfully your blood work came back and everything was normal.  Yahoo!!  This was good news, but your dad and I couldn't relax till they found a cause.  Your symptoms continued into the week and your crashes lasted longer.  We asked to see Dr. Foulston and she agreed to see you right away.  She was stumped too and decided to do a battery of tests to see what she could find.  Perhaps we were dealing with mono, there were many symptoms that we were seeing that could point to mono.  At a last minute decision, she also decided to do a throat swab.  You had not complained of a sore throat but we thought why not just cover all our bases.  Again, all the blood work came back normal and the first test for mono came back negative.  I was secretly hoping that it was mono, at least mono would be something we could handle. We followed up with Dr. Foultson two days later and she shared with up that his throat swab came back positive for strep throat.  Yes!  Finally an answer!  Dr. Foulston explained strep throat would cover some of your symptoms but the cough you had now developed wouldn't be the strep throat.  Anyways, we needed to start antibiotics right away and see if there was any change.  However, she did reassure us that she was fairly confident that we weren't looking at a relapse. What a relief!  We are to follow up with her again this week.

Did the antibiotics work?  Yes, you did a complete 180 after only one dose.  You are back to bugging your sisters, running around the house and eating up a storm.  We finally decorated our tree as you did not have the energy for the last week to help.  It has been a huge sigh of relief for your dad and I.  The last two weeks have been completely anxiety ridden with many sleepless nights. A lot of old memories and feelings came flooding back and we did our best to keep going, but it wasn't easy. It absolutely killed me to see you sick again and not knowing what it was ate me up inside.  Friends and family around us were a huge support and again helped in more ways then they even know.  We are so grateful for all the support we have.

This Sunday, we will spend time as a family feeling relieved and grateful.  It is time to focus on the here and now.  Again, grateful for the family and friends in our lives and most importantly for the health of our family.  I can't wait to start this new week by going back to our normal routine (minus the cold and cough I have managed to catch).  We will have all your tests and scans done on Dec. 18th, in Calgary.  I have full confidence that they will tell us what we already know...cancer you are completely gone and definitely not welcomed to come back anytime soon!!!!

Love you to the moon and back,

Mom  

Days to Celebrate!

This month we have had some very exciting days to celebrate!

The first day to celebrate was your return to preschool!  You are back attending Montessori preschool and we couldn't be happier.  The Montessori staff has become family and we are grateful that you will have one full year at this amazing school before you are off to Kindergarten.  Here are a few back to school pics:

The next big day we celebrated was your birthday!  I can't believe you turned 4!!  You are growing into such a big kid now and I can see you becoming more and more independent.  Sometimes I just want you to stay my little baby forever, but I know you have great plans for your future and I can't wait to see you go for your dreams.

                      


The adjustment of school and both of us parents going back to work has been going well.  We are establishing a routine in the morning and when we get home from school.  You are a big help when it comes to making lunches.  However, getting up earlier in the morning is definitely not your thing.  It takes awhile for you to venture downstairs and eat your breakfast.

We are looking forward to fall.  You have an appointment in Calgary this month on the 18th.  It will be good to see Dr. Anderson and make sure all is well!!

Love you buddy,

Mom  

Summer Check Up!!

August 15th, 2014

It definitely has been awhile since my last post.  We have been busy...enjoying summer!!  Between hanging out with friends at the beach or water parks during the week and camping on the weekend, things have been great.  I love watching you and your sisters enjoy your time together.

You had your monthly check up on Tuesday, with Dr. Foulston and I am happy and of course relieved to report that your blood work is looking good.  Your iron levels are a little low and Dr. Foulston would like for us to address this with Dr. Anderson, next month, when we see him in Calgary.  But, with everything that could go wrong, I think we can work with low iron levels.  Dr. Foulston also reported that you look healthy and strong.  You still have no reflex in your lower legs, but she is optimistic that this will come back.  This is just a side effect from the Vincristine.

You did have an appointment with a physical therapist this summer and we worked together to create a program to help strengthen your legs.  You often complain about leg pain and have a hard time walking long distances.  Your score was a little below normal so it something worth working on.  The exercises are fun and you enjoy doing them.

In July, you completed your first, non-parented, swimming lessons.  I am so proud to say that you passed with flying colors.  I am so grateful that we were able to do one more "normal" thing this summer without having to worry about your health.

Also in July, we had your celebration and thank you party.  It was a huge success!!  I was overwhelmed with the amount of family and friends who came out to help celebrate with us.  It was very hot so your superman costume didn't stay on too long but we had a back up shirt, which you were okay with.  Some very special guests came all the way from Winnipeg to help celebrate; our only wish was that they were able to stay and visit longer.  They do really know the meaning of a "quick" trip!!  Your dad also went through with his head shaving event, supporting Kids Cancer Care.  He managed to raise over $3000 for such an amazing cause! I haven't had a chance to sort through all the photos, but I will post a few.  I am hoping to make a photo book of the day.

  
 

We have spent a lot of time camping around Medicine Hat.  We still like to stay close to home, in case you have a fever and need to go to the hospital.  You absolutely enjoy camping and love to go on adventures.  The last couple of trips have been with friends with older boys and you are their shadow all day long.  It is so cute seeing you look up to these boys and try to keep up with them.

We have a few more trips planned for August and September, just trying to take advantage of every nice weekend left.  However, we are also preparing for back to school and back to work...yikes!!  I am starting a new position with Medicine Hat School District #76.  I will be tackling the role of Behaviour Interventionist.  This position, even though it is new and a learning curve, it gives me a lot of flexibility in my schedule and the team I am working with is very supportive.  I will be working more this year; I work Monday thru Thursday and have Fridays off.  However, I can switch my day off, depending on meetings, so this helps with doctor appointments.  You will be returning to Montessori and I couldn't be more excited.  Both your sisters did the Montessori program and had a great head start going into Kindergarten.  You did miss a whole year of the preschool program last year, but I know you will catch up in no time at all.  I am excited to get back to a "normal" routine, as well as return to work, but I would be lying saying that I didn't enjoy the time we spent together.  I think you and I are going to have some separation issues come the start of September :(

I just want to say that I am so thankful that we are able to spend this summer at home, with everyone healthy.  I will never take our health for granted and because of that we will live for every moment, even the small ones.  Right now, the Rooney family has been hit with some very hard news.  Their son, Dom, recently had cancer cells return and it is AML.  Reading this news hit your dad and I hard. This is a reality for us but we have been so fortunate so far that your health is still good.  We pray for strength and positive outcomes for this amazing family.

This was a bit of a longer post, just trying to catch you up on your summer.  I hope to get back to more frequent updates.

Stampede July 2014

A visit from Big Grandpa and Little Grandma (Great Grandparents)

Baby Bennet, Born July 10th, 2014

Love you to the moon and back,

Mom