6 year update!

April 1st, 2019

Even though it has been 6 years since your official diagnosis I can still remember the day like it was yesterday.  Every day I am reminded that God is great and he knew that you had a whole lot of living to still do!  I am so very thankful that you are not only here every day, but you live with nothing holding you back, and that is truly amazing!

What have you been up to in the past year since I have last updated?  Well, you have continued with your love of hockey!  This year you found that you enjoyed playing center and even a bit of defense.  We may struggle to wake you up for school at 7:30 am, however, getting you up at 6:00 am for hockey does not seem to be a problem :).  Your love and enthusiasm for the Oilers is evident even though they may not be having the greatest year.  You know all the players, their stats, and cheer them on every game you can. Last spring you started baseball and thoroughly enjoyed your first year.  You are signed up and excited for another baseball season.  Your focus is definitely on sports and as such, you won an athletic award at school this fall. 

School is a trickier subject to talk about.  You are definitely making gains this year but it has been a struggle.  You are hard on yourself and therefore when you don’t see the result you were expecting you get pretty upset.  We have really worked with you on your reading and I am so happy to report that you are beginning to enjoy books.  Finding books that you are interested in has not been easy but anything sports related especially hockey, has been a hit.  Again, your teachers and your dad and I are not seeing anything too concerning in regards to your academics so at this time we hold off on any further testing that is offered by the Children’s Hospital. 

You had a visit to the long term survivor clinic this year and again we are happy to report that you have a clean bill of health!  Your dad and I have also noticed that when you go to your appointment that you are calm and do not seem the least bit nervous anymore.  I think it is because you feel comfort in knowing your past, what happened to you, and that you have overcome it all.  You are curious to know what is going on with you and any questions your dad or I have.   

The word cancer has, unfortunately, been a topic of conversation in our house for the last couple of months.  In August, Grandma was diagnosed with breast cancer and has battled through chemo and radiation for 7 months.  I know this was not easy for you and you wondered what this could mean for Grandma.  Like in true Grandma style, she fought hard and we can say is on the winning end!  Grandma and Kallum - 2, Cancer - 0!  We will continue to pray that our family will stay strong and healthy!

Exciting news is that we are headed to Disneyland this Easter!  Easter is always a hard holiday and it brings many difficult memories back for your dad and I.  It will be nice to be away and doing something different this Easter.  Only 19 more days!!   

It is crazy to reflect on all that you have done in a year!  This year has had its up and downs but in true Ulmer fashion, we have overcome the roadblocks and focused on what is important.  We will continue to move forward.

Love you to the moon and back,

Mom

5 Year Update!

April 1st, 2018

It is crazy to think that it has been 5 years since you were diagnosed.  It has definitely been on my mind lately, especially since the Easter season is a very real reminder each and every year of when everything started.  Regardless, I am beyond thrilled to report that after 5 years you present as a vigorous young boy who won’t let anything stand in your way.  We have had no “scares” and your appointments have concluded with a clean bill of health.  We couldn’t ask for anything more!!

An update on year, considering it has been a year since I have updated your blog...yikes!!  I am pretty sure your greatest personal accomplishment this year would be hockey.  You were so hesitant with the idea of actually signing up for hockey that we waited until the last possible day and your dad made you come with to the office to “officially” show you that you had committed to playing.  I know this was a big decision for you and you did a lot of thinking before giving us the green light.  Days before evaluations there were a lot of questions and uncertainties but you made me so proud when you ever so quietly got all your equipment on and stepped out onto the ice to complete the necessary evaluations.  There may have been a tear or two.  Eventually you were placed on a team, picked #97 as your jersey number (which I think helped in more ways than one) and you never complained all year.  You definitely had a lot of catching up to do and catching up was exactly what you did.  Your dad and I were amazed at your continual determination to be faster and striving to be in the play at each game and practice.  By the end of the season you racked up quite a few goals and assists, made it known that defense wasn’t your strongest position, and developed a true passion for the game.  You are already asking when hockey starts up again...oiy! 

Whether you like to hear or not, school is another area of growth for you.  Last year we had some concerns regarding your reading and writing.  The beginning of this year we were still seeing some concerns but with a bit of extra intervention and your drive to want to read better I am happy to report you have grown a whole year in just 4 months!  You are excited to read each night and you continue to seek out new books to read.  School does not come “easy” to you but your willingness to work hard will definitely see you through.

Plans for your future...you have signed up for baseball this spring, which will be totally new for you.  Bike riding and street hockey seem to be your choice activities for spring as you are always outside from the minute you get home from school.  We continue to do our “normal” life and remind ourselves to never take “normal” for granted.  You are a continual reminder that God is great!! 

Love you to the moon and back,

Mom

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