8 Year Update!

Another year, another update.  I will never take for granted the chance to update the blog with your survival journey.  It has been 8 years since you were given your diagnosis and our world was completely turned upside down.  Today, April 1st, we remember what we felt and how we coped 8 years ago and celebrate where we are now!  

I had to reread what I wrote last year knowing that Covid-19 was new and definitely on our minds.  Guess what??  It is still here :(.  We have learned more about the virus and how we need to cope.  We have missed out on many family traditions and get-togethers this past year.  These restrictions have been hard on you and everyone else.  You miss hanging out with friends and family.  Covid-19 has also changed the way you competed in sports.  This year you played a total of 4 hockey games before we were shut down.  With new guidelines you were eventually able to only have hockey practices; however, only 10 players were allowed on one side of the rink.  We are hoping that things will open up and you will be able to play baseball this spring/summer (fingers crossed).  

Also, due to Covid-19, we had your yearly check-up with the Long Term Survivor clinic over a zoom call (video call).  Zoom calls seem to be the new trend due to the pandemic and most appointments are done this way to limit the number of people in hospitals.  Through the video call, your team felt like you are definitely healthy and had no concerns.  It is always so refreshing to hear that there are no concerns and you can continue to live your life to the fullest.  This is and always will be celebrated!    

School, this year, has provided you opportunities to be with your friends.  With restrictions only allowing your immediate family in your home, school is where you get to see and be with your friends.  This year is your last year at St. Pat’s and you will head to Notre Dame next year.  This is hard for me to think about.  You are my baby and my last child to leave elementary school.  You are looking forward to the change and the opportunity to be part of a sports academy.  Considering that recess and gym are your favourite subjects, the sports academy will be right up your alley!  You have struggled this year in school, more than any other year.  Math has not been easy and we have had to share with you the way your brain processes information and why you struggle with mathematical concepts.  Sharing with you your strengths and how you are able to complete other tasks without little thought has helped.  Your learning profile is not what we would call “typical” and you present like you shouldn’t have difficulties and sometimes this is hard for people to get past.  Nevertheless, your school team is supporting you and learning how you learn best.  Eventually, you will need to become your own advocate and request the strategies you need to learn best.  It is all a process.

This year has been hard on you not only because of Covid-19 and the restrictions it has put on your life but also because Abbi has not been doing well.  She has been admitted a couple of times now to ACH due to her CRPS (complex regional pain syndrome).  Her pain levels have been high as of late and I know that it has taken a toll on you.  For a few years, I have observed how you give support to others who may be struggling or have more obstacles with their daily lives.  You are keenly aware of how they feel and you are almost on heightened alert to ensure that they are okay.  I see it as your caregiver’s/protector’s heart or that of another sense.  This has been pointed out to me by others who have said that you knew exactly what to say or do when they have received bad news or are going through a difficult time.  Teachers have let me know that you are always very helpful in the classroom; however, you are always willing to help those students who have or struggle with various disabilities.  They share how you truly see them and just know how to help them.  It’s not that you feel sorry for them but that you honestly care for them and want to help - you become their protector.  Well, this year your dad and I have witnessed how you know how to just “be there” for Abbi through some of her darkest days.  Days when dad and I can’t seem to help in any way, you can.  We also notice that you are hurting because she is hurting.  This sometimes comes out in frustration and I can see your struggle.  How fair is it for a 10-year-old to take on so much?  You can also sense the days when your dad and I are suffering, even if we try to hide it.  These are the days you snuggle in so close and don’t say anything.  I can’t tell you how much this calms and soothes.  I wonder if you developed this caregiver’s or protector’s heart so early because of what you went through?  It is so hard to describe.  Of course, I am thankful for your gift and love hearing how you have impacted others.  However, this year, with Abbi, I worry that you don’t see the impact and improvement you want to be there.  I know you carry this each and every day.  When you peak into her bedroom to see if she made it to school or when you ask what her night was like and when you just sit on her floor while she sleeps.  I know you take it all on.  

I usually don’t have wishes or hopes for the next year.  I know that you are a survivor and make each and every year better than the last.  However, I certainly hope when I sit down to update your blog in a year from now that I won’t have to report on how Covid-19 has continued to disrupt your life.  I hope to report that you are enjoying sports again, to their full capacity.  You are back to hanging out with all your friends.  But, the biggest wish I have is that you are playing ball in the backyard with both of your sisters and I know how much you want it too.

Love you to the moon and back,

Mom 

7 Year Update!

Another year has come and gone.  You are 9 years old and absolutely thriving!!   As always, I update your blog on April 1st with what has happened for the past year.  I will do this again this year but know that I feel so blessed that I can report that you have had an uneventful year, in regard to your health.  Today, it has been 7 years since we were given your diagnosis and your journey to beat cancer began.  I will never forget that day and I will always bring awareness to the success side of this awful disease.

To start off I must state the obvious and most current event of 2020, which is COVID-19.  COVID-19, also know as the Coronavirus is a disease that has not been previously identified in humans and to stop the spread we need to stay home and out of the public. Today, we are working and doing school from home due to the pandemic that is affecting our world.  This will be a big piece of history.  You have only been home now for 2 weeks but they project that we will be staying in our houses, away from others, until summer.  I am happy to report that you are coping well completing online learning through Google Classroom, social interactions through face time, and physical activity in the yard with your sisters.  However, I have thought a lot about how we would have handled this whole situation when you were in the hospital.  My heart absolutely breaks for those families that have their children in the hospital with little to no immune system.  We are so lucky that we don’t have to worry about this situation but pray that those fighting, as you did, are kept safe.  

Enough for the history and sad state of the world, this update is about you and what you have been doing for the last year.  Your passion for sports is still evident at every passing season.  You just finished your first year in the Atom division for hockey.  You loved your year and I can’t believe how well you improved.  The Oilers are still definitely your favorite team to watch but due to COVID-19 their season is “postponed.”  You were convinced that this was going to be the year we would be able to follow the Oilers through a few playoff rounds and may be right to the cup; however, we will have to see when the season continues or if it will just be canceled, which is crazy to think.  To say we don’t know what to do without hockey to watch is an understatement!!  Even though baseball season will also be postponed, you have already started practicing with your sister.  Pitching seems to be something you are interested in pursing and I hope you get a chance to play this season.  Your dad and I love watching you pour your heart into every sport you challenge, you definitely don’t see any barriers in your way.

School is school.  Definitely not your passion but you continue to go each day...well not now because of that coronavirus going around.  Your favorite subjects still continue to be gym and lunch.  Your biggest struggles are definitely math and having to do any corrections.  This year during your checkup at the long term survivor clinic they offered us the opportunity to get a Neuropsychological Assessment completed.  This assessment is offered as many of the chemo meds you took affect brain development and could lead to other learning complications.  The results of this test showed that some tasks that require a different kind of thinking can be difficult for you, especially mathematical reasoning.  It also showed evidence that your executive functions which help you with everyday tasks such as organizing and time management could cause you some grief.  All this information gives your dad and me as well as the school some strategies that can help you out in these areas.  This is really cool stuff and will help us all understand you just a bit better!

Speaking of your appointment at the long term survivor clinic, it was very much routine.  You are growing and thriving as you should.  They are so informative and ensure that your dad and I have all our questions answered.  We don’t have to go back for another year, so another year we will wait for our reassurance.  I have to admit that I was worried about going to one appointment a year but it is always hard going back and reliving all those experiences.  The longer time has passed the less we have a “need” to be back.

Well, life continues to give us some ups and some downs and you are able to tackle what you are given.  I look forward to updating again in another year and look back at all you have accomplished.

Love you to the moon and back,
Mom

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...