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

Test Results!

It totally slipped my mind that I had not updated your blog with your latest test results.  It is great news!!  Everything came back clear and your blood work was right where we need it to be.  This gives your dad and I some relief, at least for the next couple of months.  I know by looking at you that your healthy, but having numbers tell us what we are assuming, is just more reassuring.

Summer is finally here!  I am so happy that this summer you will be able to go swimming and enjoy the beach.  We have already had the pool and sprinkler out and I am happy to report that you are already sporting a farmer tan...lol!  To kick off summer, we will head out to the cabin in Elkwater, with your cousins, and enjoy the wonderful weather.

Preparations for your party have started.  We can't wait to see who all comes out the help celebrate. A year ago, I would have never thought this was even possible so there is no time like the present to celebrate your life and amazing strength.  We even have a few special guests coming all the way from Winnipeg.  We are truly blessed to have wonderful family!!

Along with your party, your dad will be shaving his hair for Kids Cancer Care.  Only one more week of his long locks!!

Love you to the moon and back,

Mom

Celebration Time!

Your dad and I decided that we wanted to have a party, to celebrate the fact that not only are you cancer free but your counts have recovered enough that we could do a public celebration without worrying about germs, etc.  It is Saturday, July 5th, which I know will not work for everyone, but our summer has quickly booked up now that we have a trailer and want to get out and camp.  Ideally, we could have had it later in the fall, but we wanted to do it at a park so all the kids would have somewhere to play.  There will be games and bouncy castles for all the kids to play with, as well as the park at Kin Coulee.  You are already excited for the party and even more excited that it will be a Superhero Party!!  Anyone and everyone we know is invited, meaning if you are reading this post, you are invited!!  I will attached the information poster to this post for all party details.  **I just noticed that the bottom of the poster didn't come through when I transferred it.  It says: Where: Kin Coulee Band Shelter    When: 11-3

The celebration will also be the place where your dad will shave his head.  He is raising money for Kids Cancer Care, which is a foundation that we utilized a lot while in Calgary.  The link to donate is:

https://secure.csfm.com/kidscancer/shaveyourlidforakid/home/profile.php?participant_id=148781421396320182&tstamp=1402345563

This week, you were suppose to go to Calgary for all your tests.  Unfortunately, another young girl had passed away from cancer.  The funeral was on the day of your tests so we had them moved to this week so your dad and I could attend.  It is truly heart breaking knowing that Jaylyn was taken so young.  She was Aunty Chandra's cousin and we knew the family before Jaylyn was diagnosed.  I remember being totally shocked when Aunty Chandra had informed us of her diagnosis and we would always asked how she was doing and how she was recovering from her many surgeries, our heart broke for her and her family.  Little did we know that just short of a year later, we would be on the same unit as Jaylyn and get to know her family in a different light.  We will always be grateful for the support they gave us during a very difficult time.

As for an update on you...not much has changed, which is great!  You are anticipating our camping trip this weekend and also excited to see Carter and Mailey, when we go to Calgary.  I am anxious about your tests, like I always am.  It will be nice to breathe easier once your test results all come back.  There is no reason for the worry, but I always do.  I know that come Thursday evening, I will be able to drive back knowing your body continues to stay healthy.

Love you to the moon and back,

Mom

This and That.

Things have been going great the last couple of weeks.  We have spent a lot of time enjoying the nice weather, we have even had the pool and sprinkler out.  You absolutely love being outside, but it does wear on you.  Afternoon naps have reintroduced themselves to help cope with all the sunshine and play.  You will doze off anywhere, with little warning.  I have found you around the house, with a blanket cuddled up.  If we are out and about, you will pile up jackets in the shopping cart and have a snooze while we shop.  I find that the trampoline really wears you down.  We are just glad that you are out and enjoying life right now.

At the beginning of the month, you started soccer.  It is the first real thing we have registered you in since your diagnosis.  I figured soccer would be safe since it is outside and either dad or I need to assist you.  Soccer has been a lot of ups and downs.  You are so excited to have your night and excited to wear your own soccer shirt and shorts, but you find it difficult and tire easily.  Your dad and I continue to encourage you, but won't push.  We can definitely see that you still have a lot to work to do in order to build up your endurance and physical strength.  This is something we will discuss with your Oncologist next month.

On a sad note, this month a dear friend of yours passed away.  Jenna was a young lady that you had met when you were on Unit 1.  She was an amazing support for your dad and I and you enjoyed hanging out with her.  I think you thought it was just great to meet someone with no hair and tubes just like you.  You called her, your special buddy.  Unfortunately, we were not able to attend her funeral, but planned a special morning to pay our respects to Jenna and send special messages to her in heaven.  We were joined by some very special families, who we have met on our journey, The Gregory's and The Rooney's (Dominic and Trish were in Calgary but we definitely with us in spirit).  Sean Rooney created an amazing video of the whole experience.  I will try to post to the blog.

Next week we are in Calgary to have all your tests run again.  You will have x-rays,  an MRI, an ultrasound and a check up with Dr. Anderson.  I hate that this is something necessary, but it always gives me piece of mind that your body is still in remission.

I hope to update the blog with some exciting news, soon!  We are planning something for July because we think it is about time we celebrated with all our family and friends who have supported us in so many ways. Stay tuned!!

Jenna's tribute video:

Some soccer pics:

Love you to the moon and back,

Mom

May Update!

Today started with a doctor's appointment and CBC, with Dr. Foulston, at the Cancer Clinic.  Your check up was great and we just received word that your blood work came back "normal" and "normal" is awesome!! It is so nice to have these checks once a month to just make sure your body is still healthy.

Just last week, you finally had your first hair cut in over a year.  In fact, you had absolutely no hair up to November.  Your hair has grown in so fast and so thick.  I couldn't handle the "bed head" every morning so I asked you if you were ready for a hair cut.  It actually took you some time to be okay with the idea of a hair cut.  I think I started asking last month and you kept telling me you didn't want one or you would say that you wanted one "tomorrow."  Well, last week you told me that you were ready, so we went to Tommy Gun's, a man/boy barber shop, and you had your hair cut.  You weren't too sure during the hair cut about what to think and didn't smile or cry.  I had a few tears just knowing how your hair loss was such a physical reminder of what you had overcome.  I didn't want you to think that just because we were cutting your hair, that you were sick again.  You ended up finishing your hair cut with a smile and now you tell everyone to feel the back of your head because it feels so different.  You are so proud and I am happy we went ahead with this milestone!

Love you to the moon and back,

Mom

Here are a few pictures of before, during and after your hair cut.

BEFORE:

 

AFTER:

 

An Easter Re-Do

Easter 2014

I know that it has been a week since Easter, but things have been busy around here with your sisters off for the entire week.  However, I wanted to make sure that I made the time to blog about Easter 2014 because it was pretty awesome!

Last year we spent Good Friday in the Medicine Hat hospital in total devastation, not knowing what our future was going to be like.  This year we had 22 family members at our house to celebrate.  Not only were we celebrating Easter, we were celebrating being a family, together.  Everyone of your cousins were at the house and you had a great time hanging out with all of them, young and old.  The whole day I just watched as you took part in all the activities and how excited you were to be with everyone.  I wouldn't trade those moments for anything.

Sunday morning we were able to have our "traditional" Easter morning.  Again, last year, Easter Sunday we were at the Children's Hospital, having been transferred the night before and this was the first day your WBC dipped and all signs started to point to Leukemia.  Anyways, this year you were home and followed the egg trail down from your room to your Easter basket.  You and your sisters went on your egg hunt through out the house and you were so excited!  Your dad and I didn't say much but just watched and just knew how good it felt to see you and your sisters doing Easter the way we always do.

I did want to mention that your last blood work (early April) came back and your neutrophils had taken a dip.  Dr. Foulston had your blood work ran again this past week and everything has gone back up.  It was a long 2 weeks for your dad and I as we tried not thinking about the reason why your counts dipped.  You had a nasty cough and I just kept praying this was the reason for the dip and now, with the results back, this was likely the cause.  It is tough thinking that we are always wondering.  I really hope that with time it will get easier and that as you get older you are not burdened with the constant wondering.  At least for now, we can relax knowing your body is healthy.

This past weekend we finally went to see Uncle Chris, Aunty Jena and Corbin in  Acadia Valley.  We haven't been able to visit since your diagnosis as medical services were too far away out there and we didn't want to take the chance being away from a major hospital.  You and your sisters had a blast.  The weather wasn't the greatest but you guys didn't let that stop you.  You spent a lot time outside riding toy tractors, quads, bikes and hot tubing.  It was great taking a trip, just because!!

Love you to the moon and back,

Mom

Here are a few pictures from Easter weekend and the many egg hunts you participated in!!

Cousin Jordan helping you out.

Dyeing Easter Eggs

Easter Morning

Ulmer Cousins

Egg Hunt at Grandpa and Grandma's

Hiebert Cousins

One year on your Journey

April 1st, 2014

One year ago today, your dad and I were told you had Leukemia, it wouldn't be until April 3rd that we had your official diagnosis.  I will never forgot the day.  I can actually still remember the sounds, the room, the way we all sat in your hospital room.  Dr. Anderson had given us an answer to the weeks of unknown symptoms and sickness.  There was a small sense of relief as we finally knew what was attacking your body, we had a protocol to follow and your treatment plan.  I didn't know what to think...will it work?  What would chemo be like?  How in the h*ll were we going to get through this?

Guess what!  We made it!  A year ago we cried in your hospital room as we watched your body suffer with sickness and today I watch you run around our house, full of energy and life.  I will never forget what we have been through this past year, but I know that I need to focus on our future because we are so lucky to have completed your protocol with 100% success.

I have to be honest, these few days have been really tough.  I am always haunted by the low days in the hospital and the beginning of your treatment had to be the absolute lowest.  I have time now, to reflect our time last year and I still don't know how we ever made it through.  I know that we had some amazing family and friends by our sides and could not have done it without them.  But still, how did we really cope?  We were so numb to everything and just went through the emotions.  I still know we are working through some of the bumps and bruises we encountered on our way.  I worry about how some of our choices affected you and your sisters. I guess only time will tell and I try telling myself that it just made it us all stronger in many different ways.

Today, April 1st, 2014, we will celebrate many positive things.  First and foremost, you are 100% cancer free!!!  We are blessed with an amazing family that has only become stronger throughout the year.  We celebrate that our focus this summer is where and when we can go camping or to the cabin, instead of when your next round of chemo starts.  We celebrate that you need a haircut...hooray!  We celebrate that your counts should be recovered enough by May and you can start attending public places, such as school.  Lastly, we celebrate that our family is healthy, all together and thriving and I can't wish for much more than that!!

Here is a picture of you one year ago today.  It was the start to your journey...


  

Here are pictures, a year later.  I wanted to take a picture with your beaded journey, as it is a great visual reminder of your last year.

\Love you more than you will ever know,

Mom

Hooray for Great Results!!

I just wanted to update the blog with your latest test results.  Everything was 100% clear!!!  There is a big sigh of relief in this house.

The nurses and doctors were amazed with how good you looked and said that they could hardly recognize you.  You were a trooper through all your tests and you were very excited to get some onion rings from Peter's Drive In on the way out of Calgary.

You amaze me everyday!

Love you to the moon and back,

Mom

Now I know what I didn't know

*Sorry for the late post...

March 12, 2014

All through this journey I said I had it easy, I stayed with you and lived just one side of the journey.  I stayed in hospital by your side knowing your mom and others would take care of sisters and the rest of our lives.  I always worried for your mother, what she must be going through bouncing back and forth from Calgary and Medicine Hat.Tonight I sit at home with your sisters in Medicine Hat learning what its really like to be this far and helpless.  Kallum I have a re-affirmed what I mean when I say your mom belongs to an elite group of tough mom's with sick children, it kills me to be this far away and I don't know how she did it.

I thought I was ready for this, as mom has been doing the monthly appointments alone in Medicine Hat.  The first time you got blood work after your line was removed I struggled thinking about the needle I missed, but I made it through the day with little notice for my concern.  Through this all only Mom and I had to hold you down for needles, it made me comfortable thinking you felt safe with us holding you.  The second time, as one would expect passed easier, its not the fact mom is there, she's more capable than me; I have a hard time letting go of the fact I'm not there and a harder time knowing somebody else is holding you down.  I lost count of the many sedations, mornings fasting, hours waiting, talking and distractions, suddenly they are a blur cause I'm not there this time.  I now truly feel the internal battle your mother endured, tonight was easy when the girls were awake, but left alone to my own thoughts, I battle.

Its been some time since I shared a lot, but I wanted to make sure you know not only how proud I am of you for how you faced this journey, I also wanted you to know how proud of our family I am for facing it together.

This family is full or heroes, you taught us how.

Love Dad

Month of March

It is said that March will either come in like a lion or lamb and will leave, the opposite.  Well, last year, 2013, our whole month of March was that of a lion.  Coming into March 2014, I have a lot of anxiety and unsettled nerves.  My hope is that this March will be a March to remember, for all its good rather than the bad.  I would like our whole month of March to be a lamb.  We have started it off right, with our Wish Trip and I hope to continue the great times.

A year ago, March started with me, in a lot of pain and you acting different than normal.  You were more tired and didn't want to do too much.  We thought you were getting teeth, an ear infection or were worried about me.  March 12th was my back surgery, which was hopefully going to be the answer to a lot of your "different" behavior.  Doctors figured once I recovered, and wasn't lying in bed all the time, you would "snap" out of your funk.  Well, that was not the case and March continued to just get worse.  We finally had you admitted March 27th, 2013 and then we would start a journey we would have never thought possible.  We missed Easter as a family and I will never forget the full Easter basket sitting in your room, waiting for you to return.  It killed me to empty and put Easter away while you and Daddy were in Calgary.  This year, I know things will be better, but it is hard to shake some of these feelings...it kinda feels like deja vu, and I need to realize that today is a new day and I need celebrate that things are great right now.

Tomorrow we leave to go to Calgary to have all your tests done again.  You will have a chest x-ray, MRI, ultrasound, bone marrow aspiration, lumbar puncture and a check up with Dr. Anderson.  Your tests came back, all clear, 3 months ago and I have been praying that they are the same this time around.  This time, for tests, you will have to get an IV as you no longer have your central line.  I am not too sure how this is going to fair, but I know we will get through it. At least this time you won't be expecting it, I am not sure how you will be 3 months from now.  The hard part will be waiting for the results.

As usual I don't really have anything new to add on top of what mom has already said but I wanted to say something small. I feel the same anxiety your mother does, it's not sitting and waiting for something bad to happen but feeling we are not out of the woods.  Your mom talked above about all the other things we thought it was and its hard to describe how blind sided I was when the diagnosis came.  I just want to make sure if that time ever comes again I was watching for it, I don't live on pins and needles but I am much more aware of the things that effect us all.  Praying for the best for your and know you are getting tougher yet and soon IV's will just be another thing you push through.

I end this blog watching you drive your tractor up and down the driveway. Hooray, for some nice weather!!  My heart is so happy to see you so active. We actually all went for a family walk tonight too, just another thing that was not possible last year for you or I.  I just pray that every day is like today!!

Love you to the moon and back,

Mom

A Trip of a Lifetime!!

Well we are back from what we have called "our most amazing trip ever!"  It truly blew away all of our expectations and dreams.  So much so, that your dad has even stated that he wants to go again, which is huge because you dad hates travelling.  There are really no words to express how amazing it was and hopefully some of the pictures can do the talking!

A few highlights from the trip were seeing you light up whenever you saw a character or interacted with them, your favorite by far was Mickey.  You absolutely loved the beach, especially the sand.  We had a hard time telling you it was time to go or even time to eat.  Pirate night was one of your favorites too.  You loved the fact that you were dressed up like Captain Hook (thanks Debbie) and then the "real" Captain Hook took the stage and tried to take over the ship.  My favorite was just enjoying time together as a family, taking in everything that was presented to us.  Disney really does know how to make the Magic happen.  So many times I just watched you and your sisters take it all in and tried to remember the moment so I could keep the memories forever.  I do have to agree what the whole trip was Magical!!

Here are just a few pictures to give you a small glimpse of the trip.

Love you to the moon and back,

Mom :)