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 :)

Wish Trip!!

Tonight we told you and your sisters that we finally finalized your Wish Trip and we leave next week!!!   You guys were totally shocked.  We have decided to keep it a secret for many reasons, but wanted to just give you guys the surprise of a trip and to let you know that we are going on an airplane to get there.  What we didn't tell you is that we are headed for a 7 night Disney Cruise in the Caribbean...woot, woot!!  We only just found out a few weeks ago and I have been going crazy trying to get things ready, without spoiling the surprise.

I have mixed emotions about this trip.  I do truly believe our family will benefit and may even deserve a little rest and relaxation, Disney cruise style, but I feel that we have the best gift of all, you home and cancer free!  You and your sisters have been through so much this year and I am so glad that you will be able to celebrate and enjoy your vacation.  There is a lot of great things about the Disney cruise, including their dedication to a healthy environment, for example, if anyone is sick, they are not allowed in the public areas.  There is also a great medical team on board and they are well aware of your medical history in case anything happens while on the cruise.  I am still nervous about taking you out of your bubble, but if your Oncologist feels like you are clear to go, I guess I just need to enjoy the process and relax.    

Everything else in life is going well.  You have been enjoying many baths since you have been home, which means you have needed a lot of lotion for your dry, dry skin.  In fact, you usually have a bath while I get ready in the morning and then another bath at night when your sisters are showering.  You still have a nap every other day or so as you still do not have the energy to make it throughout the day.  We try to have some down time in the afternoon and this is when you usually pass out.

There have been a few scares of different "bugs" being passed around both at the girls' school and within Abbi's ringette team.  We are trying to as normal as we can, as a family, but these "bugs" are not so good if they get passed to you.  We are trying to maintain the bubble around you for a few more months, while your counts completely recover, but this is sometimes difficult during flu season.  So far, so good!  I so appreciate the heads up from other Moms letting me know that their child is now sick and could have been in contact with one of us.  I know that we cannot predict or prevent everything, but informing us helps us react quickly.  Just the other day, Abbi and dad had a sleepover at Grandpa and Grandma's house (they are currently in Hawaii, lucky ducks!!) until we made sure everyone was healthy before they were around you again.  With only a week until we leave for our holiday, I pray everyone stays healthy!!  

Love to the moon and back,

Mom

Exciting Week!

And they are gone!

This week has been pretty exciting!  It all started on Monday when you finally had your "tubes" removed.  Your surgery ended up being at 8:30 am, so it was an early start to the day.  You were excited to get going and couldn't wait to get them out.  Usually when you are sedated, you wake slowly and are quite grumpy.  However, this time, your dad and I could hear you coming back to the recovery room telling everyone that your "tubes" were gone.  Once you had dad and I in your sight, you quickly lifted up your gown and said, "look, look, my tubes are all gone!"  I was so overwhelmed and choked back tears so you didn't think I was upset.  I couldn't be more happy for you.  The "tubes" were such a physical sign of everything you had to endure and it was a barrier to roughhousing, baths, sledding, swimming pools and other fun activities.  You were finally free of these "tubes" that had been holding you back for so long.  You downed three apple juices and then many containers of jello so the nurses were okay with letting you go.  You walked so proud out of the recovery room, ready to show your family and friends that you were finally free!



After a quick snack, we headed back to Unit 1 (Oncology) to say "hi" to some very special people.  You couldn't wait to see what nurses were working and who you would see.  From the moment you saw the nurses station you were already back to your old ways.  You even asked the nurses if you could help them work.  We also had the opportunity to visit a new little friend, Dominic.  It was great to see his smile and walking around his room.  During your last chemo treatment, we met the Rooney family, they are also from Medicine Hat and Dominic is currently undergoing treatment for AML. Dominic will undergo a bone marrow transplant next month and we will be keeping him and his family in our thoughts and prayers as he goes through this new treatment.  He may be little, but he is a huge fighter!!

The best part of the day was coming home and seeing signs and streamers decorating the house.  Uncle Dusty, Auntie Tannis, Emersyn, Aspen, Gracie and Abbi had decorated banners with encouraging and celebrating messages.  You were so excited and couldn't stop jumping up and down.  Your sisters quickly returned home and you whipped up your shirt so fast to show them that your "tubes" were all gone.  The were so happy for you!  Again we all celebrated with you...I don't think the celebrating will ever get old :)

This week you went to your first birthday party, without your sisters.  You were so excited that you were going on your own and that your sisters needed to stay home.  I think you even rubbed it in a bit!  It is a risk, being around other kids, but knowing the family well and that it would be in a large area we decided it would be worth the risk.  There was a bouncy castle and now with your tubes out, you took full advantage.




Tonight was the icing on the cake!  You had a bath!!!  Your last bath was 10 months ago and you have been saying for months that you couldn't wait for your "tubes" to be out so that you could have a bath again.  It is crazy to think that just a plain old bath could be so exciting, but it was yet another sign of normalcy.  It warms my heart knowing that you achieved one more goal.

Love you to the moon and back,

Mom

One more sleep!

Just wanted to a write a quick update as we are currently on our way to Calgary to get you Broviac removed tomorrow morning.  It has seemed like a life time waiting for this day and now we are only one sleep away.  We are staying and Uncle and Auntie's house in Calgary tonight as we need to be at the hospital by 7 am.

I am excited to have your Broviac removed, as it is yet another physical reminder of the journey coming to an end.  I know that it is not ever really over, but at least for now we can live with monthly appointments, blood work and then tests every 3 months.

You are very excited too!  You tell everyone, "I get my tubes out and then there will be no more dressing or cap changes!"  These weekly, sometimes twice weekly, procedures have been become part of your routine.  It will actually feel weird not keeping track of all your medical changes, as well as supplies.  The "tool box," which houses all your supplies as well as the "emergency kit" have become part of all of our lives.  It is not bizarre to hear Abbi reminding to us to grab the emergency kit as we leave the house.  You are also very excited to have a bath and also to go swimming.  I cannot wait for your wound to completely heal so we can all experience these favorite things.

Tonight I will go to sleep anticipating the day ahead of us.  I am still anxious, worried and scared every time you are sedated and this time it will be for a longer period of time as you are actually have a surgical procedure.  I always pray that all will go smoothly.

Here are a few pictures, I took quickly this morning of your Broviac.  Every morning would start with a white t-shirt, so we could pin your Broviac up.  I can't wait to get you ready and not have to put a white shirt on!!!

Love you to the moon and back,

Mom

Just wanted to add one more I had on my phone...

Happy New Year!

Jan. 7th, 2014

I have tried to sit down and write this post a million times, but with the craziness of the holidays and feeling under the weather, time has been hard to find. Anyways, Happy New Year!!

I am happy to say that we spent the holidays celebrating as a family and it felt so "normal" and in this case "normal" feels amazing!  Christmas has been our first holiday, since you were diagnosed, that we didn't need to worry about whether or not you would be in the hospital or if your counts would delay the protocol. We did play it safe, in case you had issues with your line or a fever that needed you to be admitted, but we managed to stay away from all hospitals.  I can't explain how amazing it felt to have us all at home only thinking about how we were going to celebrate the holiday season.

Santa did come and spoil you and your sisters.  You were so excited with your new tractor and wanted to drive it right away.  The remainder of Christmas day was spent with our extended families and playing with new toys and cousins.  We did all our traditions...cookies for Santa, early morning cinnamon buns, breakfast with all the family and matching jammie pants (thanks to Nanni).  Knowing that we were all together felt so good.  The only tradition we weren't able to do was going to church on Christmas Eve.  We just could not risk exposing you any germs so we had a quiet Christmas Eve night, which was also nice.  During the holidays, the girls spent a lot of time skating in the backyard.  Your are not a fan of skating, just yet, and you seem to tire easily, but you do enjoy grabbing a shovel and making a mess of your dad's backyard.

Sickness did not stay away from our house, I have been fighting a cold since Dec. 20th and continue to fight it today.  I did go and see my doctor and he ordered a CBC to make sure your WBC (white blood count) was high enough to fight off anything you may catch from me.  Your WBC was 4.3, which is good.  I just try to stay away from you as much as possible and Lysol wipe all the areas you like be in, just in case.  So far, so good, you have managed to stay healthy!

We are still waiting to hear back about your monthly appointments.  Things were left through all the holidays and we are hoping to have you seen soon.  We do have peace of mind with your recent CBC and knowing your counts are all good.  Next month you will need to have all the tests done again, in Calgary, just to make sure you are still cancer free.  You are also on the countdown for your surgery to have your broviac removed.  You are scheduled for Jan. 20th.   Everyday you remind me that very soon you can have a bath and go swimming because your tubes are coming out.  Your dad and I realized that it has been a year now since you have been in a swimming pool.

I have attached some pictures from Christmas.  You can see from the pictures that your hair is coming back nicely.  We are actually able to go out and not have people stare when you decide to take your toque off. You are very excited that your hair is coming in and can't wait for your first haircut.  I am not too sure if I will be able to actually take you for a haircut, but time will tell.

Love you to the moon and back,

Mom