June 26th, 2013

Wednesday
Home
Weight: 14.2 kg
Nurses: Your sisters
WBC: 1.1

Well as you can see, we are still in Medicine Hat.  You had your blood work done yesterday and your counts had not recovered enough to start chemo today.  We will have your blood work done again on Friday to see if your counts have recovered.  Your red blood cells were a little low so they suspect that you may need a transfusion on Friday.  If your counts recover you will start chemo on Tuesday, in Calgary, due to the long weekend.  We were happy and sad with the results.  Happy that you will be home longer, which is amazing, but sad that we are delaying your protocol.  Delays will stretch things out longer and we are eager to complete your plan sooner than later.

Anyways, we are going to use every minute we have with you.  This means more bike rides, backyard playing and definitely more dancing!  Also, this gives people a chance to come and say hi that were not able to before due to the short time you and dad were going to be home.

I would like to mention a fundraiser hosted by ARC Resources.  They are having a Garage, Bake and BBQ sale for Arc families affected by cancer.  It is this Friday at the Arc Resources Ltd. (behind the old Walmart), from 9-3.  Thank you to everyone involved!

We are loving every minute with you at home.  I cannot describe how it good and normal it feels to have you at home.  We definitely have our limitations but are making the best of the time we have.  It takes something like this to value a simple walk or bike ride as a family.  At this moment you are playing dress up with Abbi and are all dressed up in necklaces and bracelets...so cute!!

Love you buddy,

Mom

June 24th, 2013

Monday
Home
Weight: 14.2 kg
Nurses: Abbi and Gracie

Well on Friday we got the all clear and you and dad were able to come home.  I have to mention that Calgary was under a state of emergency, due to flooding.  Some of the doctors were a little hesitant with you leaving as it was rumored that Medicine Hat could be flooding as well and you might not be able to get back to Calgary if needed.  Anyways, dad knew that both of you needed some time at home, as it had been over a month since you were both home last so he did his best persuading to get the release.

You and dad arrived home Friday night.  We opened the garage door and found you running towards the door with the biggest smile on your face.  You yelled out, "I'm back!"  You were so cute!  I cannot describe how great it was to see you so happy and excited to see us.  The girls were thrilled to have you home and didn't want to go to bed because they wanted to be with you.  We all had a very restful sleep knowing we were a family again, under one roof, our own roof!

We spent the weekend hanging out at home, as a family.  Family and friends came over to visit and play.  You loved jumping on the tramp, coloring with chalk and going for wagon rides.  Your number one request was listening to "Inner Ninja" on the deck and showing everyone your dance moves.  It was so cute seeing you dance with your sisters and cousins.  I think this has become everyone's favorite song...including the neighbors.

I wanted to mention that today, Gavin (Morgan's son), at the age of 5, decided on his own that he wanted to shave off his hair to support his buddy.  He did this for you, Kallum!  We are so proud of him and lucky to have his amazing support.

It warms my heart seeing you in such great spirits and with your sisters.  They love having you around and just want to be where you are all the time.  It kills me to know that tomorrow you will have to go back to the hospital to start your next round of chemo on Wed morning.  I know that you will be devastated considering that you have become quite comfortable at home, with your family, and the hospital is the last thing on your mind.  I know your sisters will have to deal with your absence all over again.  It does really affect them as well.  Each time it gets harder and harder because we get more and more time together.  Hopefully over the summer you can spend more time out of the hospital and the girls can come to Calgary a lot more.

Well buddy it has been an amazing weekend.  I know the next week will be rough, but you have proven that you are a true warrior and can fight through it.  Your family and friends are behind you 100%.  Your courage is truly inspiring.

Love you to the moon and back,

Mom

June 17, 2013

Monday
Unit 1 / RMH
Weight: 14.2 kg (Yahoo!)
Nurses: Kristy / Amy
WBC: 9.1

So the girls were able to come up and visit this weekend, which was great!  The unfortunate part was that Gracie started to show symptoms of a cough on Sunday and we had to split up our visit.  We did manage to do some activities as a family on Saturday and enjoy a nice dinner together.  Even though our time was short it does seem to boost everyone's mood, so it is well worth the effort.

You are still on day passes from the hospital which leaves you from noon until 8 pm to venture over to RMH or any other "safe" activity.  Your counts are high which means they will start the Methotrexate tomorrow.  We are definitely hoping that you can flush the Methotrexate out of your system by Thursday so you can go home for a short visit before your next treatment starts.  I have to keep in the back of mind that there could be complications, etc, which would prevent you from coming home.  It is hard not to get excited. 

Your energy level has been through the roof, which is always nice to see.  You spend most of your mornings in your wiggle car going up and down the hallways in the Unit.  You also spend a lot of time at the nurse's station, "helping" them chart.  I do see the old Kallum a lot these days and it is hard to know what you still have to go through to beat this awful disease.  I must remember that you will get through this and we can have you back at home soon burning off all the energy.

I must add that your sister, Abbi, had some words of wisdom for me the other day.  While doing her hair, she said to me, "Mom, I know why God gave Kallum Leukemia."  Not sure if I wanted to know this answer, I asked her to explain.  She said, "It is because he wanted our family to be stronger.  He knew we could handle it.  Right, mom?"  I didn't know what to say or think.  She surprises me all the time with her thoughts and reasoning's.  She is right, I have to believe it, although at times it is hard.  On the hard days I have to remember to think positive and take some of Abbi's advice.   She is one amazing sister!!

Well, I am back in Medicine Hat making sure Gracie is feeling better before you come home.  You have a few hard days ahead of you but I know you will bounce right back.  We are all cheering for you and I know your Inner Ninja will be fighting all the way.

Missing you already,

Mom

June 12th, 2013

Thursday
Unit 1
Weight: 13.85
Nurses: Kristy
WBC: 0.3

Well, today started with your red blood cells being low however, you would never know.  You have so much energy and look healthy.  They did order you a transfusion, but after talking with the doctors we are going to hold off.  The more transfusions you have the more increase risk you have in the future so if we can delay with the hopes of your counts to recover on their own, we will.

In rounds today, they discovered that the antibiotics you are now on will have to be switched as they will increase the Methatrexate levels and we need to start the Methatrexate as soon as your counts recover.  We don't want to delay your treatment plan so we need to make the switch now.  You are on antibiotics for 14 days now, which are administered every 8 hours.  We have tried to time them so you can get out of the hospital at noon and won't need to be back until 8 pm.  We can go over to RMH, go for a drive or a walk in the middle of the day, which will be nice.  Your counts have not yet recovered so we need to be careful with where we go so you don't get another infection.  It is disappointing that you won't be able to go home in between this cycle due to the infection but we can hope that possibly you can make it home at the beginning of July.

This post was not posted...lol...better late then never.

Love Dad

June 11th, 2013

Wednesday
Unit 1
Nurses: Danielle, Sarah, Elly, Kelly, O. Laura, Jayne and Janessa
Weight 13.5Kg +/-

So its been awhile since I blogged, as your mom said we had a great time out.  We walked (you in the stroller) a lot of parks and pathways that I never enjoyed when I actually lived here.  However, as mom said, all good things must come to an end and we are back in hospital.  On Monday, your first blood culture came back positive and so we needed to redraw blood again.  We need to get 3 consecutive negative cultures back before we are released.  This meant the earliest we would be getting back out is Friday, the same day we were hoping your counts would be high enough to get another does of chemo meds that are part of this phase of treatment.

Things in hospital really have been different though, you feel 100% and have a ton of energy.  You spend days out at the nurses cluster causing a fuss about who gets to sit with you.  They have you doing "charting" and putting stickers on things, highlighting or play minesweeper.  Megan, (your best friend) finds you a plasma wiggle car and a trike and you guys are racing down the hall ways.  Your first day on the wiggle car is a little sketchy but you really have it dialed in by day 2.  The big change is the fact we can now lock your lines between meds, so every 8 hours you get 2 hours of meds but are free for the rest.  Tuesday, for example, you charm your way up to the nurses desk again and I even get 20 minutes to eat lunch alone.  At first it seems nice but to be honest I quickly begin to miss you, even when your yelling for me not to talk to you.

Mom came back up to see us today and we are still waiting on an update for your blood cultures. Your energy is still high, despite your red blood cells being low.  Mo-Mo, Chris, Gavin and Kaden all stop in for a visit and you are just a normal kid.  They cannot believe the energy in your actions, your voice and in your eyes.  However, late afternoon is slightly muted as it turns out the bacterial infection you are carrying is going to mean 14 days in-hospital with IV antibiotics every 8 hours.  Good news is it will not effect your Chemo schedule and we are not on isolation, so the plan is to schedule meds so we can leave to RMH each day from noon till 8pm.

Pics are from the visit with your sisters and playing around the hospital.  I know they are sideways...I am trying to figure that out as the pics are from my phone.

Love Dad

June 9th, 2013

Sunday
Unit 1
Weight: 13.7 kg
Nurses: Elly/Kelly
WBC: 0.0

Well the weekend started off right when Abbi, Gracie and I came to see you and dad at RMH.  You looked really good and had a lot of energy.

You had gone to clinic on Friday and your WBC was at 0.0 and we have not seen one mouth sore (knock on wood).  You did have a platelet transfusion, but you were able to go back to RMH once it was done.

We had a nice supper on Friday, at RMH, and then hung out in the room until bedtime. On Saturday morning, we went down to the river and spent some time throwing rocks.  This has become a favorite activity for you and dad.  The girls had a great time and Gracie tried avoiding every dog that came down to get a drink.  In the afternoon, we hung out at RMH and Uncle Dusty, Auntie Tannis, Emersyn and Aspen came to visit.  We all walked down to the duck pond and had a picnic lunch.  It was great to see everyone and even better to see you playing play with your sisters and cousins.  We did go back to the room and noticed you were a bit tired.  When dad took your temp you had a mild fever.  Anyways, we monitored the fever and then called in to the unit to see what we should do.  They suggested that we bring you back to the hospital to be monitored and to get antibiotics.  It was hard taking you back over to the hospital after having such a good day with family.  The girls were pretty upset knowing that we wouldn't be spending the night together.  I explained to them that when your counts are so low that you are able to catch anything and that fevers are something that is to be expected sometimes.

This morning, the girls and I made our way over to the hospital.  This is actually the first time your sisters have been to the hospital.  Whenever they have come to visit, you have always been at RMH.  You were proud to give them a quick tour of all the rooms you have stayed in, the playroom and most importantly, the kitchen.  You are feeling a bit better, but you are grumpy. After getting your counts back this morning, it is obvious that you need a transfusion of red blood cells.  Abbi and I stay with you as you get your blood (it takes 3 hours) and Gracie and dad go back to RMH so dad can shower and grab a few more things.  You and Abbi hang out in your bed and watch Scooby Doo.  It is comforting to know that you two can still just chill out together even though it has to be in a hospital bed.

The doctors had mentioned that you could possibly get a day pass for today so we will wait and see.  They like to keep you on antibiotics for 48 hours, after a fever, to make sure everything is all well.  You will be staying in the hospital again tonight, but might be able to get out tomorrow.

The weekend was great.  I am glad the girls were able to hang out with you and dad.  I just hope that you can come home for a bit to hang out.  We miss you so much buddy.  It is getting harder and harder leaving you (somehow I thought it would get easier).  I am dreading leaving you today knowing that I have to be strong because the girls are with me.  They can sense when I am upset and this worries them.  It is just something we have to do, but I am not going to lie, it sucks.

Missing you and loving you so much,

Mom

June Update

Update:

I wanted to post an update as a lot has happened in the last couple of days.  Like I mentioned before, you are on different chemo meds this round and we are all waiting to see what kind of reactions you will have to them.  So far, so good!  Actually after day 5 (June 3rd) you were released from the hospital.  You did have to have an ultrasound, chest xray and a blood transfusion before you left, but you did eventually go over to RMH.  You and dad are staying at RMH, just to be close to the hospital, in case you start to develop some side effects from the chemo.  You also have an MRI today, Thursday, so we would have had to have you back anyways.

Your last couple of days have been spent biking and walking with Dad.  You love the duck pond, which is located between the hospital and RMH.  You even "ran" into one of  your favorite nurses, Megan, when you went down to visit the ducks.  You were pretty amazed that Megan was out of the hospital too!  Lol!  Dad has taken you for quite a few truck rides too.  This is great except gas is 131.9/L right now, which is crazy!  We are also very lucky to have Auntie Chandra and Uncle Brandon's house to go to.  Auntie Chandra is on maternity leave right now and is home during the day.  You and dad have made some visits to their house too and you enjoy playing with Carter and Mailey.  It is difficult to find things for you to do when we need to keep you in somewhat of a bubble.  We are just happy you are out of the hospital.

It is Thursday right now and I still don't know what the weekend will look like for us.  This is the frustrating part of this whole process.  I am a planner and I have really had learn to take it day by day.  Some professionals have said that you could possibly go home for the weekend where others say that you need to stay in Calgary.  Hopefully, when you have your MRI today, Dad can find out some more answers.  I would love for you to come home.  After this weekend, you might not have an opportunity to come home again until after the next cycle.  We are just worried that since your counts have not reached 0.0 yet that you may require more blood transfussions.  It is a guessing game.  We want you home so bad but don't want to have to turn around and come right back to Calgary.  I am praying you do get to come home, even if it is for just a few days.

I wanted to mention that Dad posted your new theme song on top of the blog.  It is not spam...lol, it is a link to the song Inner Ninja.  The story behind this song is that a few weeks ago, your dad had the music channel on in your room.  When the nurse came in she caught you dancing and bouncing to the song, Inner Ninja.  She started dancing and singing with you.  The next couple of days you had mouth sores and spent most of your time in bed.  The nurses would come in and try singing this song to you and sometimes you smiled but you were not in the mood to dance.  Anyways, you did get better and before you were released, the nurses turned on this song at the nurses station and all sang and danced as you were leaving the unit.  You were shy, but smiled back at them.  This time, when you came back to the hospital, you have requested dad to play this on his computer.  The nurses come in and dance with you all the time.  You now have a bum shake and karate chop moves to accompany the song.  I love this song now and think it does have some meaning to this whole situation.  You do have an inner Ninja inside of you and you will fight this cancer with all that you have. You are such a warrior!

Love you more then you know,

Mom

Side Note:

I just wanted to mention that many people have said they have left comments, but we have not seen them.  We have never seen any comments that have been put up on the blog.  Feel free to email us anything and thank you for all your support.

rulmer@telus.net
leoulmer@telus.net