More Good stuff

So once again we find ourselves in a "good position".  As most of you already know the decision has been made to bring Gracie off Cyclosporin.  This is the drug she has been on since pre-transplant, which makes her immune system compromised.  They have kept her on this drug as a response to the HLH(hemophagsytosis) that showed up again pre transplant as well as as cursor to Lymphoma.  The problem being with Gracie's prognosis is that there is no protocol, I just learned that out of the 18 cases found with her condition of children under the age of 10 (as discussed earlier) no one has ever done a high dose, radiation stem cell transplant procedure.  We are on new ground.  So when it came down to taking away the last "anti-cancer drug" it is a guessing game, but we were all in agreement that the pneumonia she just suffered was enough to make everyone scared enough to not compromise her immune system further.  So she will be "effectively" done treatment at the end of December.   "Happy New Year".
This also brings us to a stage of how do we pick up the pieces?  Gracie cannot go into a day home/daycare until Jan 2013 as she needs to start her immunisations from scratch.  I found a playgroup for immune compromised kids, however because Gracie is not vaccinated, she cannot go.   So what does someone do with a two year old, someone who has no kid experience and someone who would have a hard time filling her own days if she didn't have a two year old?  Well I now know every limerick, nursery rhyme, and bad dance move (cause yes Lori lets face it I can't dance) but it is fun to try.  It reminds me of the Friends episode of Rachele wanting to run like a supermodel and Phoebe showing her what fun running was really about.  It is frustrating that I will still have to question people like war criminals in order to see them, but I am grateful, she is here and she is dancing and singing.

I cannot end this post without saying a prayer for the Amsings and everyone else that I know who's diagnosis was not that same.  I promise you we will live life to the fullest and only waste our "no" to life on the things that don't matter.  I will say "yes" to life because of you.  Thank you for making me a better person. 

Merry Christmas Season to all....

Our Miracle Girl

I am not sure how many of you know the story of how Gracie came to be.  Readers Digest version is that in 2008, Gary and I, after 3 years of waiting, finally got an appointment with the fertility clinic here in Calgary, after some pretty frank discussions surrounding my age it was decided that we would try IVF to get pregnant.  After one round of the fertility drugs we were told not to bother and that our chances of having a child of our own were "slim to none".  They referred us to a counsellor and sent us on our way.  Anyone who has dealt with these guys, bedside manner is not their foray.  We went home and took our lumps, I had a great boss at the time who allowed me my "pity party day" with no questions (thanks Launa!).  But we picked ourselves up and made some new plans.  To be honest we were OK either way, we both knew that we would lead happy and fulfilled lives nonetheless, just in a different direction.  Well 6 weeks later I felt so awful I thought I was sick, but because I had no family doctor I went back to the fertility clinic and well 2 weeks later and a million pregnancy tests (the tests kept coming back positive but because of some surrounding circumstances they were convinced that the baby was lost) they confirmed a pregnancy.  This took everyone, especially Gary and I, (I do believe his head did a 360 when I told him) by complete surprise, good surprise but surprise none the less.  Here starts the story of Gracie, a two and half year old that never does anything "textbook".  

With everything that she has gone through up until now and all the odds that she continues to defy it makes me think.  She has a disease which has only been documented in 18 other children throughout the world.  Upon diagnosis the disease was in over 75% of her body, I don't think any medical person really thought she had a hope in hell.  The complications that arose leading up to transplant, the fact that we went into transplant without a complete recovery and it seems to have worked, the pneumonia and nobody knew for the fact that the anesthesia tipped her over (she was walking around and playing with only 30% lung capacity?), this is all a head shaker.  As her old Oncologist Dr. Marty used to say, Gracie does nothing textbook. 

I wonder what life has in store for her?  I no doubt thing she was put here to do something big, she has to be here for more than just our enjoyment?  I don't deserve all that.  She continues to amaze me everyday with her strength and resilience.  Don't get me wrong she is like any two year old and lasts 10 minutes at dinner, has huge objections to clothing other than her princess robe, to her its perfectly acceptable to wear it to the mall, she melts down if Bunny is not in a reachable distance and freaks out if you want her to wear brown shoes instead of black.  She sings when no one is listening, getting only every fourth or fifth word, dances when everyone is looking, loves to hear people laugh and gets upset when people are sad.

I can tell you one thing she better not give me any more grief during her teen years, I am full up.  I know that Mom is laughing and saying "payback is a bitch" but I am serious little girl, you do not want to meet Rita (my alter ego, rightly named by my White Rock pals), she is nasty. 

I don't know anything for sure anymore and I no longer can tell you with the certainty of a 20 year old that I know what tomorrow will bring, but I do know one thing for sure and that is the moment you decide to become a parent, you make the decision to spend the rest of your life with your heart walking outside your body.

Things are good with us today, this week and this month, I hope this trend continues.  Wishing you all the best memories and happiness that life brings to your doorstep.  Every moment is a memory.  Dance when everyone is looking, sing even if you don't know all the words, listen when people are laughing and listen harder when they are sad.

Happy Christmas Season...oh and just in case any of you were expecting a picture of Gracie and Santa this year, here is 2010, don't think its gonna happen....

The Sterks

New time

I am so sorry for not posting earlier, we arrived home last Saturday, but life has been busy with scheduled medications and clinic times, so I have not had any time to write anything, nor have I known what to say.  It has been a year this upcoming week that we did a celebration of a negative biopsy.  I truly thought then it was over, people came to the Black Swan to celebrate and brought gifts, it was all very merry...little did I know, a year later and we are still in the biggest fight.  Her Pneumonia knocked me off my game, I now truly understand how things can go from so normal to so bad so fast.  It is official we will never be the friends, people or family you ever knew.  I do know, even though we had some bad weeks, we don't have it so bad, life on ward gives me this and I know that life has something else in store for us.  I think it will be good, it has to be. 

I know you all follow this blog to hear things about Gracie, but if you want to hang up now, I get it, but these are the people that I think about when I say we don't have it so bad and they need to be acknowledged, if not for you for us, Charlotte, the person that was with us from the beginning, I wish I could be more like you, you are triumphant!!!  you will always be an inspiration to me and I will make sure that Gracie always knows who you are; Ty, complain as your Mom says you do, you are a fighter, Brynley, what can I say you and Gracie are competing in Tot's and Tiara's Cyclosporin style!! and you do make Superman look like a wimp.  Diamond, well you are famous, I just wish you were famous for something else, but I know you will be, I do know you will, it is in your DNA., and the person that had the biggest impact on our lives, Mr. Skalk, you will never be forgotten, I will remember, but the weird thing is so does a two year old.  She says your name all the time, I keep telling her you went home.  Thank you my friend for easing her fears and being her friend, not many 15 year olds have that kind of maturity to care that much about a two year old girl...thank you from the bottom of my soul...I miss you so very very much. So does your Mom, I try to talk to her once a week to see if she is OK, but I talk too much and am not sure I am helping much...she needs a sign...from you...

To everyone who reads this thank you from the bottom of my heart, it has been nothing but sorrow this year, ever time I turn around it is bad news, but I maintain still that life is good, the Brynley's and Charlotte's teach me this every day, every day is a good day.  You make my heart sing, you are the only children my daughter has ever known because of isolation and immune suppression.  I love you for that.   And we will always rally around you...forever.

Gracie is good, there continues to be "secondary" issues that are happening...she is having a hard time walking and has quit "running", she wants to be carried alot, this we suspect is from a weaking in her bones because of the amount of steroids she has had to be on for the last two years, we will see.  If it is OK by Mel, I will now adopt the same mantra...day by day.."

Life continues to be good, we laugh all the time, and are so excited about the awaited addition to our family, Gracie's cousin Ari...., for your Mom's sake, come soon...we can't wait to see you, you will be a welcome greatness in a sea of horrible....we love you already....the best is yet to come....

Stay safe...and thank you on this remembrance day to my Uncle Paul, My Gram pa Bert and all the people who were selfless enough to make this country as great as it is, for if it wasn't for you I probably would not be allowed to even write this blog and it would be probably be written in German,   Our Country and our justice system are not perfect but neither are you so when you believe you are then you can hold them to the same standard...choose to be happy and things are not so bad., truly it is a choice...

Love to all

The Sterks...

Dodged a bullet

Gracie is down to only 1/2 liter oxygen support as of this afternoon and her spirits have picked up quite a bit. She was making Nurse Carol dance with Winnie the Pooh and everytime Carol would stop she would yell "Dance"! It was amusing to say the least. When we look back at the last week we are ever so grateful that this scenario played out the way it did. Gracie has a Guardian Angel out there, I don't even know if I believe in Guardian Angels, but I am a few steps closer know. If that bone marrow scan was not scheduled when it was and we would not have put her under anesthetic for it, which if I didn't mention before, is what tipped her little body over the edge, she would have eventually presented at home and what that would have been I shudder to think. Also with immune suppressed people's it gets really hard to turn them around when they get too sick, so like I said dodged a bullet, big ass bullet. So I am not sure who these Angels are, most likely my Mom with some Aunt Colleen and possibly a sprinkle of Grant, but I am so thankful for them, for our medical team (no matter how frustrating navigating that can become sometimes) and for technology.

Still not sure when we get to go home, there is talk of a week from Wednesday as well as some discussion about earlier with home care support. We will see no definate answers as of yet.

Well the monitors have finally stopped beeping for the fourth time tonight so I will sleep while I can.

Love to all...

The Sterks

Moving in the right direction

Yesterday we were moved out of ICU and back on to unit 1, "home" as we call it.  This means that Gracie is out of the critical woods.  They weaned her off her hannibal lector mask and she is now just on nasal prongs for oxygen.  So this means we are moving in the right direction.  I suspect that they will keep us on ward for the duration of her antibiotics which I think would be a week to 10 days, but I am not sure.  I am going to keep this short as I have to run back up to the hospital to relieve Gary.  Will update more later when we know more, but for now we are happy with this.

Wishing you all a great day.

The Sterks

The Good, the Bad and the Ugly

So the good is that Gracie has rallied in the right direction. The fluid around her lungs is decreasing, her respiratory rate and oxygen continues to improve although she is still on suport. The bad is that she has to get a pick line in and the ugly well she looks like Hannibal Lector with her mask on.

They are now pretty much convinced that this is some sort of infection that is causing the pnenomia, however they do not know what kind. Which is bothering them, however we have decided not to do a tap on her lungs as the risk with anesthetic is too great,so we may never know what this is or what caused it. It is looking like we will be on ICU until at least Saturday maybe Sunday at which time we will be moved over to ward 1. Our home away from home.

The other good news, which is great news, is that her bone marrow came back completely clean, no lymphoma, no hemophagcytosis. So although I can honestly admit that after 17 months of treatment I have never been as scared as I was on Wednesday, we feel much calmer today as we k ow she is heading the right way. I am not sure how long we will be here, but am thankful to be in good hands.

So we are hoping to get to remove her mask tonight or tomorrow which is our next goal, us that way we be able to let her eat something finally.

Will keep this blog as up to date as I can.

Take care

The Sterks

ICU

Gracie was transferred to ICU around 6 pm last night as she could not maintain her oxygen levels on her own. They have confirmed that she does have a lung infection in her left lung i.e. pneumonia, and fluid in both with fluid surrounding as well. They don't know what kind of infection as of now and unfortunately she is too unstable to have any kind of anesthetic so we will have to wait to find out. In the meantime they have thrown the gammet of antibiotics at her and she will continue to be hooked up to the ventilator in ICU. We hopefully will find out more today.

This was so unexpected that I am not sure if that is why I am so scared or if it is watching your child under a maze of wires and tubes or the fact that she is first priority on the ICU right now but this is the most frightened we have been ever. There are alot of plausables and maybes floating around so it is hard to read. I do know that we can expect to be on ICU for a few days at least and then move back "home" to Ward 1. There are no visitors allowed in ICU nor are we permitted to use our phones so I will limit most of my communication to here for now.

Take care,

The Sterks

And the Roller Coaster continues

So Gracie had her Bone Marrow biopsy today.  When coming out of the anesthetic her oxygen levels were really low (for anyone who knows they were around 40, 88-95 being the norm) and her breathing was laboured, they could not get her to stabilize on her own.  So they did a chest xray and sure enough there was something there around her lungs.  They then did an ultrasound of her chest area and found that she has fluid in and around her lungs.  This sent everyone into a tizzy and we were told we were being admitted to monitor her.  She has had no fevers or cold symptoms of any sort and her lungs were sounding clear, so it has everyone saying the dreaded "we don't know".  Not to mention another plethora of doctors from infectious diseases, cardiology, anesthesiology to her own oncologist coming around.  Tomorrow they will take a sample of the fluid outside her lungs and then they will stick a camera of some sort down her throat to see what they can.  The cultures on this will take at least 24-48 hours, so we sit and do the dreaded wait.

Gracie's counts are fine and as mentioned above no fevers or signs of anything.  However her energy is really low and she is sleeping a ton.  When I mentioned this in clinic last week, the week before and today, everyone chalked it up to the fact that she is being weaned off the steroids and this can cause major fatigue.  This along with the amount of medications she is on compounded with the fact that Clostridium difficile (C-diff) was detected on her stool sample last week made sense, so no one was the wiser.  How long has this fluid been there?  Well anytime after the PET scan at the beginning of October.  That is the best we can do.  So we sit and we wait and calm our worst fears the best we can.

Will keep you posted....

The Sterks

Next Steps

As a quick update our lives have gone pretty smoothly over the past month.  Gracie continues to go back and forth between great energy to sleeping a ton.  This is always worrisome for us as fatigue was an indicator that something was wrong in the beginning, however Dr. Ron and her medical team continue to reassure us that she is doing great.  We are still unable to go to any playgroups, daycare, schools and the like due to her being still on an immune suppressant drug (Cyclosporin), which she will hopefully end in January but this will be a wait and see approach.  Gracie continues to be weaned off the steroids and she is now looking more like a two year old than a baby Michelin man.  Her eating has subsided and we now have the same struggles as all parents of a two year old as far as eating goes.  Her weight is now down to a healthy 13 kilos.

This Wednesday will bring us to another bone marrow aspiration where we will test for signs of HLH (which is the hemophagocytosis that she developed early on and reoccurred in May of this year).  When we received our good news I was elated for a moment but reality sets in and I went back into the Doctors asking "what is the but?".  Dr. Ron advised that there was no but....there is always a "but".  Seventeen months of prognosis has taught me there is always a "but".  So far the "but" is only the continuation of the Cyclosporin and the upcoming bone marrow aspiration.  Sometimes us parents can have a misplaced belief that somehow the thick of the journey is over. And then oftentimes it is the  news of another that awakes us to our undesirable place.  This will always be in my mind and heart and I wonder if this ever goes away?

So as we wait, again, for results of her biopsy on Wednesday I wonder, can we get so "lucky" twice in one month?  Our next steps after that is that Gracie will have to undergo some pretty heavy dental surgery at the beginning of December.  All of this has left her teeth in pretty bad shape so she will have to have 3 or 4 removed, depending on the extent of the damage.  This all seems small in comparison, but more testing and surgeries always bring anxiety for parents, no matter what the extent of the procedure is.

We continue to be normal and are loving every minute of it, even if it brings temper tantrums, food struggles and sleepless nights, we welcome all of the "normal" with open arms. 

These are the things that I know for sure I will never take for granted again...the strength and unconditional love of my Sisters, the rally factor of family who you had thought forgot you existed, the unbelievable power of great friendships, the ability of people you barely know to become the champions of your journey, the unwavering hope and strength of all the children who fight this fight everyday and still have the power to make your heart shine and your soul sing, the unselfish caring of the medical staff who come to the front lines with you and stand united in the line of fire, the Grant Skalks of the world who because of the way they chose to live their lives they will always be hero's and finally for the unconditional love of a little girl who has made me see that everyday is a good day and that stinky feet are hilarious, I will stand by you and behind you forever; I will never let go.

It's a good day...

Much love,

The Sterks..

Scan Over and a Good Day

So it is with happiness in my heart and soul that I let everyone know that we got a complete response ("CR") on Gracie's scans.  Dr. Ron happened to be on call this weekend and checked and the results came back fast!  So he called barely able to contain himself.  What this means is that, according to the Doctor interpreting the results said "that her scan looks like that of a child who had never been sick".  This is shocking to all as we never had a CR going into transplant so they were skeptical to say the least.  I can honestly say that the weight of the world has literally been lifted.  All of this being said she will continue on her Cyclosporine so the immunity issues will still be present until January where we will do another scan.

Thank you to all for being on this journey with us.  I will continue to update this blog, however probably with less regularity as our lives go back to a kind of "new normal" once again.

Love to all, it is a great day, this October 1, 2011....

The Sterks

Sunrise

As I prepare to gather with Grant Skalk's friends and family to celebrate this young man's life, I looked outside to see the most spectacular sunrise.  It makes me believe that we are never truly gone we live on in the simple things like sunrises and the giggle of children.  I know one thing, I will never forget this young man; this is not because we shared a similar journey and that his passing is so tragic, I will never forget him because of the path he chose to take in his journey.  He faced his illness with humour, dignity and grace.  He is the kind of person I would want my son to be if I had one.  This is a young man who in Grade 3 was scared and nervous on his first day but found the gentleness to offer the Classroom Mom his seat.  If Gracie has even one of his great qualities I will feel blessed.  Most people would say that this would be a testimony to his parents, and I know that his parents are incredible people but parenting is just a small part of who we choose to become and he chose amazing. I am a better person because I knew him.  Thank you for giving a part of yourself to us.

Gracie's Oma and Opa are coming for a visit this weekend and she has been talking non-stop about it, so this is something that makes me happy. She will finally get to see her cousins on Monday night for our niece's birthday, this too will make her incredibly happy, so therefore I am happy too.

Gracie's PET scan is fast approaching and this is always a sense of anxiety for us parents.  It makes us a little crazy to be honest, but I just continue to breathe and put it out of my head.  Thank God for yoga.  One mother put it best we take a hold of the gun load the one bullet and spin the barrel and wait to see if our lives will be put back onto the roller coaster yet again.  I always try to remember that life is full of twists and turns and where we land we will never know, for a planner like me this is a hard way to live, but I am learning from some good friends to take life day by day....

Enjoy this beautiful day as best you can....

Love the Sterks.
 

Update

So Miss Gracie is doing great, she is sleeping less, but still more than most 2 1/2 year olds, but has lots of energy.  Her appetite has slowed somewhat and this is a good thing as we thought she would blow up at one point!  Gotta love steroids.  We patiently await September 30, which is Gracie's next PET Scan.

But as I sit here at 4:30 in the morning unable to sleep, I write with a heavy heavy heart and tears in my eyes as our friend Grant and the son of my friend Mel passed away on Friday from a complicated battle with Leukemia.  He was a shinny penny in all of this for us, this 14 year old boy was beautiful on the inside and out. Grant and his Mom kept me laughing through most of our recent 3 month stay on ward and Mel became a dear friend.  Grant was so good to Gracie, and truly what 14 year old boy do you know that would take any interest in a two year old?   He was a hit with everyone up there for his warmth, humour and true strength.  This was not supposed to happen to him, it's not supposed to happen to anyone, but him?  I did not see this coming at all.  How can God find justification for calling home such an amazing person?  I feel that he was not done, he had a lot of things to do, he needed to go on to become a camp counsellor, he would have been so great at that as he had so much compassion, but he had a tough side too.  He needed to go on to play basketball and go to his graduation and find his life purpose making a difference somewhere, I know this is what he would have done, he was supposed to be allowed to become the man he was meant to be.  This all just gets to be to much sometimes, the only positive I can come up with here is that Grant and his family can finally get off this crazy ride we call cancer and be at Peace.

My heart breaks for his family, Mel, Jim and his sister Ali.  And just like when some of you don't know what to say to me sometimes, I am at a complete loss as to what to say to this family.  I have been up most of the night trying to find something, but I come up blank.  I know they will have the strength to get through this time, although they will never be the same, they will be able to find a new normal, or at least this is my hope.

A quote from an unpublished blog post I wrote two days ago "Like I have said before when you go up to the Oncology department in the beginning you go up there with one child, but you come out with so many more in your heart. Their battles become your personal goals, you wish nothing more than them all to be strong and healthy. You get kicked in the stomach everytime they have setbacks. These families become your lifelines."

Rest in Peace Grant, I do know one thing for sure heaven is a much better place now. 

A misplaced belief that somehow the thick of the journey is over. And then oftentimes it is the death or devastating news of another that awakes us to our undesirable place.

Vacation over...

Well I can start by saying that our vacation was fantastic.  We did beach days, we did a boating day, we hiked and then biked the Trans Canada Trail.  We had fairly lazy mornings and busy afternoons complete with plenty of sunshine and fantastic weather.  Our cabin was amazing, more like a house, there was plenty of space and it was perfect, almost a little too big, it ever came with its own private playground which Gracie loved.  Our travel partners Vikki, Kraig and Kraig Jr. were amazing to vacation with and we would do it again in a heart beat.  It was nice to be flatmates with people who were so on the same page as us as to what they wanted from their vacation.    I think there was only one night that the adults made it up past 11.  In fact one night we were by our campfire and someone made a comment about the traffic on our little road being heavy that late until we checked the time and realized it was only 8! 

That being said our vacation was not without it's stress and anxiety.  Our first night Gracie ended up vomiting and we thought we were heading home or to Grand Forks the following day.  She never did get a temperature so we decided to ride out the night and see how she was in the morning.  Well she was back to her normal self, so were were able to enjoy the next 5 days only to have her temperature rise on Thursday and she slept most of the day.  She never hit 38.3 which is our panic button and was great when she was up so this was the conundrum do we call ACH, do we take her to Grand Forks?  The anxiety of it all was a little too much for me, so although she was not feverish we decided to cut out the second leg of our vacation where we were heading to Canal Flats to spend the long weekend with friends, hence the home on Friday.  She seems ok while I write this, she is napping and ACH told me to just monitor her, however as her temps are all over the place, 38 then down to 36.9 in a matter of 10 minutes, we have decided as a precaution to take her to ward 1 and have the oncologist on call check her out, hopefully this means nothing.  I said to Gary on the way home, I wonder if there will ever be a time where we are not afraid?  As the other parents of Ward 1 can attest the anxiety you live with on a daily basis is almost unbearable, even when you look like its all ok, it is always there lurking under the surface.  This is not negative it is just our reality, I wonder if it will ever be over and we can take Gracie somewhere and not look for all the potential risks to her health.  And not worry if she is tired, she just had a big day so she is tired...but for us it is always a "maybe not", it is like waiting for a bomb to drop. 

All in all it was better than it could have been, so we are so thankful to Vikki and Kraig for spending the time with us, we love you guys tons.  And am so disappointed to miss out on Winnie and Kurt, we will make it there one day, at least now I still have something to still look forward to.

Hope everyone enjoys their long weekend...

Love The Sterks

Holding pattern

Now that we are "off treatment" as they would say, which means to me that she is not undergoing chemo, radiation or transplant we are in a holding pattern, a good holding pattern but a holding pattern just the same.  If I can quote another mother's blog "There is a certain type of cruelty that goes with being off treatment. We now get to live our lives in three months increments, where at the end of the third month, we spin the barrel, pull the trigger and hope that we will dodge the bullet that shattered our world again.  Our PET is scheduled for September 30th after which we will hopefully begin another 3 months of waiting.

She is still on a plethera of drugs at home, but we are at home nonetheless.  Still holding out that we will get to go on our much awaited vacation next week.  We still have not managed to level out her magnessium, but as Dr. Ron says we still have a week.  If I can quote another mother's blog "There is a certain type of cruelty that goes with being off treatment. We now get to live our lives in three months increments, where at the end of the third month, you spin the barrel and pull the trigger, hoping once again to dodge the bullet that would shatter the world around you."  Our PET is scheduled for September 30th after which we will hopefully begin another 3 months of waiting. 

In the meantime, Gracie is pretty much back to herself, although talking nonstop - and no I don't think she gets it from me, for all you out there WONDERING!.  She is much more active and I think I counted the other day I didn't sit down for nine hours, between the trips to the park, hauling out toys and making food non-stop.  I have no idea what I am going to do when Gary goes back to work at the beginning of September.  Although this may sound negative I am so excited to have her back that I would take not sitting forever if she would just stay like this.  That being said I would like the eating to calm down, which it will once she is off steroids, but she has gained almost 2 kg in two weeks I now have a 28 month old who weighs 14 kg!  Holy moly.....but as her dietician Suzanna says in a couple of weeks I will be whining that she is not eating enough.

A few people have asked me if I am glad that it is over.  Here's the thing, as a cancer mom it is never over, as I said before you live your life in 3 month increments, and although the anxiety will ease with every passing scan, the amount of children I have seen on ward and in clinc that are there because it has come back 2 and 3 years later or that they have developed secondary cancers becuase of the initial treatment makes me scared.  However I do keep in mind that I don't get to see the ones who don't come back.  It is just the amount of new faces in clinic and ward makes me wary.  According to Stats Canada two-thirds of childhood cancer survivors (those diagnosed under 5 years of age) will have at least one chronic or late occuring effect from their treatment.  Although I hate statistics, because Gracie was that less than 1% of all cancers diagnosed in children, its hard to put out of your mind completely.  So when asked when will be over?  Answer I give is "I don't know", truthful answer is "it will never be over".

 

On an upswing

Well Gracie's lines are out.  Yes that is right, they are out.  Now usually this is a big cause for celebration, however in her case, although I am celebrating those nasty little things being out, they have been removed as they completely failed.  By the time they pulled them there was only a 1/2 inch still left inside, which would be why they weren't working.  However I am treating this as a small celebration of a life being able to be led as close to normal as possible over the next 6 weeks.  This means that we can actually go in the lake on our holiday, yes for all you other cancer fighters out there, yes we get to actually go in a lake!!  Gracie can actually have a bath, go to a pool and all of that fun stuff that normal people do.  So I say YEAH!! We just have to hope she does not need any further IV medications as this will now mean inserting an IV.

Other than that Gracie is returning to her normal hilarious self.  Gary went golfing yesterday afternoon so her and I went for Sushi, she was so excited she was running around the restaurant (we used to go to this place alot, so she knows it well) while we were waiting for our take out stopping every once in a while to ask me Sushi???  Yes she is an anomaly.

So life continues to be busy and lots and lots of clinic time, but hopefully this too will taper off.  She is still on a plethora of oral medications, but she is even taking these in stride, she hates it, but you eventually are able to convince her, so no more fighting...this is a yeah too!!

Hoe all is well with everyone,

Love
The Sterks

Officially a month post transplant

Well we are 1 month post transplant which is a milestone in of itself, as this is the mark that we will be transferred from the Transplant Team back to our Oncology Team.  On a sad note we did have to say goodbye to Dr. Marty as he has completed his fellowship and is on his way back to Australia with his family.  Although we wish him nothing but the best it was a hard good-bye for me as he has been the person holding our hands through this journey and we trusted him explicitly.  We will now be back in the care of Dr. Ron Anderson who was our original doctor and who oversaw Marty's fellowship, so this is good too as you could not meet a nicer guy, not to mention he is incredibly approachable and meets you with nothing but honesty.  I have included a picture of Gracie and Marty.

Gracie continues to do well and is eating us out of hearth and home.  She gained 1/2 a kilo in 2 days, wow!  This is the good thing about steroids, although we are tired of cooking non stop.  Gracie is also coming back to herself, she is happier and sleeping less each day, we get glimpses of her goofiness which always makes me smile.

We have had some issues trying to get her magnesium levels up and this is due probably to one of the drugs she is on, and the level of that drug (cyclosporin) is also an issue so I think one will correct the other eventually.  Her broviac lines (the lines that she has inserted in her chest so that she does not require iv's or needle pokes) are a continued source of frustration for us.  We are on our second set of lines and these too have stopped working.  We can administer drugs through them but can no longer get blood return on them, so this means that Gracie has to get a needle every clinic day, which is every second day at this point, however she does pretty good with this, she cries but loudly announces, when it is finished, that she is "DONE"!   There is some talk about taking out the lines, which we welcome, but not until we can get the levels mentioned above in check.  They usually don't take lines out until after the three month mark as you do not know if you may need them again, but because hers are pretty much broken they will take them out early and replace them if need be. 

So things are going quite well for us and we are happy and content.  We hope that everyone else is enjoying their summer.

Love The Sterks

Day by day

Things are getting better, she is still so shy.  It's funny because I don't know if this is an age thing or if it is due to all that she has been through.  All I know is she is not the person she was pre-transplant.   I hope that she will come out of it at some point.  She is great with Gary and I, but bring in someone else and she will not move, weird.  Anyway we are having a great time, I got absolute belly laughs out of her when we took a bath tonight, and all because she could shoot water at me with a syringe??  Go figure. 

Gary and I have got quite creative at getting her to do the things she has begun to hate, i.e: meds, we take syringe's full of water and make faces at how awful they are and then she takes them more willingly and the bath thing she loved being in there with me, so hopefully we are on an uphill climb as it has been awful to force her and I refuse anymore.  I will now try to make everything as fun as possible before having to force her.  So far so good.  I wonder if when she will figure it out.

Hope everyone is doing well...

Love as always..

The Sterks..

Lost track of what post transplant day it is

So we are at home, and things are ok.  But I look at her and wonder if this little girl is going to be back to the person she once was.  She seems to be such a shell of herself, this is hard.   We had a good day today, we went for an hour walk this morning (after clinic which is daily), with her in the stroller (she never sat in a stroller for more than 15 minutes before), and then we bought a new bike seat for her (she was done with the chariot) and we went for an hour long bike ride through Fish Creek this afternoon.  These were both good, however it wiped her out only to be asleep by 630.  This wouldn't be such a bad thing if we didn't have to wake her to have her bedtime meds.  This sucks, everything about this sucks.  We have had a few visitors over the last few days, all healthy I might add, but still she won't come near anyone. Won't even come outside if there is someone she doesn't know, and she seems not to know anyone anymore.  This breaks my heart.  Our medical team keeps trying to reassure me that this is all normal, but I ask every day when is "our girl" really goning to come home.  We miss you....

Hope all is well with everyone....

Love The Sterks..

Go Home Day

So after 16 months you would think I would no longer be surprised, but they were saying all week that we would be out early on Monday, well its 2:10 and we are still here.  Why do I always forget that their version of early and my version of early are clearly really far apart.

Anyway still going home regardless and that is a good thing.  We still have to be careful about everything it seems, but like my friend Mel says "day by day.."

The Sterks

Day 16

Two weeks post transplant and Gracie is almost back to normal, wow she amazes me.  So our good news is that we can be out on passes as of today (this usually only equals about a couple of hours in the afternoon as it has to be co-ordinated with meds and the like, but it will be great to go outside for Gracie, she is already talking about the swing.  Our other good news is that we will be able to go home as of Monday.  This is earlier than I expected as I thought maybe we would be out this upcoming week, but not as soon as Monday.  So needless to say Gary and I are ecstatic and looking forward to all being at home together.  This is of course only if she continues to eat, her levels continue to stay high and that she doesn't get any fevers.    Hello normal three months!

Love to all

Day 14-still on track

Well Miss Gracie continues to improve, and boy have I forgotten what it is like to have a child on steroids, she did not go to sleep until midnight wanting food and more food.  She ate so much she threw up, but moved from that quickly into wanting more food.  And I awoke just now to her saying, quietly I might add, "noodles, butter, fork".  It is 5 am and I am exhausted, her no way - now she will want to get up and walk, probably with a yogurt tube or something of the like.  The appetite just doesn't quit.  That being said I am not complaining, I am just amazed at how much food one 12 kg person can put away.  I am truly grateful, exhausted, but grateful.

The Sterks

Day 12 - More Good News

Well Gracie is eating so well that they have decided to decrease her nutrition in half.  This is great because it not only allows us freedom from an IV pole during the day, but the criteria for discharge is that her counts be high, she look clinically well and that she be eating well.  So it is looking more and more like we will be going home next week at some point.

It is nice to see her personality a little on the come back too, although they have warned that it could take at least another few weeks before she is feeling really well.  So we will have a few more weeks of being a little isolated at home as I also found out she cannot be around kids who have had recent live vaccinations (?? who knew).  Not so much that we can't see people but enough that our screening processes will still be in place, nobody whose been sick, no large crowds, especially of kids and wiping down swings at the playground, nothing we are not totally used to.   Anyway at least we will be at home, together for a change.  Bought a new bike seat for her so this is what we will be up to for the  next few weeks.  And please lets hope she likes it as I think Gary will divorce me if I buy one more kiddie item that she refuses to use.

Take care

The Sterks

Day 11

Gracie continues to improve, although she is still really grumpy.  Her ANC count is at 8700 and her WBC is over 13, and that is without the GCSF.  We have been able to take down her morphine pump as well so these are all good signs,.  That being said she still does require some morphine, but we are giving this orally and only as needed.  There is also some talk about us being released early next week, which by hospital standards that probably means Wednesday.

Today after getting some morphine, she is up playing with her new games which were sent by Auntie Laura and she is drawing this is the first I have seen this since the beginning of July.

Hope everyone is enjoying the heat!

The Sterks

Day 10

Gracie's counts continue to climb, her ANC is now at a whopping 7100 (thanks again GCSF) and she is feeling considerably better.  Her and I walked around ward yesterday and rode her trike, we even got a jump and a laugh out of her.   Another sign of her feeling better is she is eating a ton, so I cannot tell you how good this is for us to see her want to eat.  

I still don't see us getting out of here before next Monday, as she is still on two antibiotics and they will need to finish their course of 14 days.  But maybe later next week?  Which would be better than we had thought.

Love to all

The Sterks

Day 9

Well thanks to our little friend GCSF (an injection given to boost immune systems) Gracie's counts are WBC 4.1 and ANC 1700!  Once she hits 2000 for her ANC and stays there for 3 days they can quit the GCSF (thank god we live in Canada and have benefits as it is around 900$ for 5 doses).  Then we will hopefully see her counts stay high.  She is still fairly grumpy and tired and still on quite a bit of Morphine, but hopefully we will see all of this get better over the next few days.

She truly amazes me though she does not feel well she is still cooperative.  I would be using some expletives at this point if that many people wanted to poke and prod me.  I truly have nothing but respect for her.  She really is my hero.

Anyway as always I am getting excited about having a life and keep trying to convince Gary into making plans, but alas he is the smart one and refuses to make any.  I am not easily thwarted though and will keep trying until I annoy him into agreement.

Have a great day.

Love The Sterks

Gracie has counts!!!

Yes this is a big day, our Day 8, Gracie's WBC count is 1.3 and her ANC is 300!  (These are both a measure of disease fighting cells within our bloodstreams they are manufactured in the bone marrow)  So this hopefully means that Miss Gracie will start to feel better by next week, which is a welcomed relief to Gary and I as it breaks your heart to see your child so sick and all you can do to comfort them is to hit the bolus on her morphine machine, which usually puts her into la la land.   Unfortunately with her counts coming up this will cause some inflammation of the gut lining as it repairs itself making her mucocytosis (sores in her throat) worse before they get better.  Bring on the morphine.

On the sad side her hair is falling out in clumps, but we expected this and although for some reason this makes me emotional, I know that it is the least of our worries.  I got really emotional the first time it fell out too, go figure.  Maybe the apple doesn't fall far from the tree as the thing that bugs Gracie the most it seems is the stat monitor which is like a band aid on her big toe.  Why this compared to everything else she has to go through?  Who knows, maybe she's just a weirdo like her Mommy.

Anyway happy day to all.  Gary is coming at noon and I am off to do some hat shopping and yoga.

The Sterks

Day 7!

We got to get rid of one of the antibiotics!!  Yeah!  Oh the things you get grateful for....

Gracie's counts continue to stay low and she will need her third platelette transfusion today...but I have been told that this is all par for the course, so we will go with that.  The time is really going slow up here as Gracie sleeps so much, that there is alot of sitting reading, blogging and watching really bad daytime TV.  I would much rather be doing 80 laps in a plastic race car around the Nurses station, but I keep telling myself that sleep is good, it is the bodies way of reviving itself. 

Not much else new to report other than she has started eating however the mucocytosis makes her throat sore and so it is hard for her to swallow, but she is trying, that in itself is big.  And go figure sticking to her "weirdest palatte for a 2 year old" she is hooked on Cliff Bars, hey what ever she wants.

Hope all of you in Cowtown are enjoying the Stampede.  They do their best up here and really do put on some great things, one being they bring the parade up here, it is awesome really.  But I am still waiting for the corn dog cart?  Mini doughnuts?  Fried Mac n' cheese?  Dear Dieticians those foods have some health benefits no???  Mr. Corn Dog where are you?  Oh well will have to miss out this year.

Happy Stampede...love to all.

The Sterks

Day 6

This is what we term our day 6 as last Thursday was day 0, being the day she received her healthy stem cells back.  Depending on what Doctor you talk to Gracie is doing well, everything she is experiencing is par for the course.  The two infections she did get seem to be gone, as her last four blood cultures have been negative.  The infections she did get were of the strep and staff varieties, which were common skin bacteria which us regular people fight off all the time, however when you have no immune system these things can make you quite sick.  Gracie continues to be lethargic and sleepy, and a tad whiny, if I may say so, but she has such a great personality that this is most often the worst you get from her.  Hell I would be nasty to be around if I had to endure the same things she does.

Her neutrophils are still at 0 and her platelets are only at 27 despite two platelet transfusions.  She has started her TPN nutrition as she is just not eating enough to sustain her, she has lost a kilogram of weight in the last few days and she has started her morphine as we believe that her Mucositis has started but in her throat so she was crying when she swallowed.  But hey nothing like a little morphine, as yesterday she wanted to be back riding the trike around ward!  She sometimes looks like a little drunken sailor.

So all in all I am out of my funk and feeling pretty positive these days.  One day at a time in here and we may start to see a turn around by Sunday or early next week as far as Gracie's attitude and energy levels return to normal as her blood counts come up.  She still manages to make me laugh as she is giving every Doctor stink eye, even Marty who was her favorite.  It's almost like she's saying "What the hell did you guys do to me?".

Will keep you posted.

Love to all

The Sterks

Reader discretion advised

If you would have asked me a month ago, or even a few weeks ago for that matter, about what lay ahead for Gracie, I would have said we just need to get to transplant, then everything would be fine.  Now that we are here for some reason I no longer feel that way.  I cannot pinpoint why I feel this way, I just know that I do.  Maybe it is that her team cannot give us better odds of this working, or the fact that you come up here only to face the reality that children do die and no you are not watching this happen in a movie or on the news.  None of us ever like to think that happens, especially those outside of our special club up here at Children's, as it is just to horrible to conceive.  But the reality of the matter is that they do.  If you were to ever meet one of these children that is facing uncertainty in their future you would think that you would be met with confusion and sadness, but go figure, that is actually their parents, the children really do live in the moment, even the ones old enough to understand, they so live moment to moment, and make everything out of that moment. I wish I could be more like them.  I wish I could take every moment and not be sad, but exude happiness and strength, but alas another reality is that whether it be I am too jaded by life, I am having a hard time keeping my chin up these days, but I do try.  I know that most people in my circle close and otherwise do not want to hear about these other kids that I am speaking about, but my life, my emotions and mostly my heart is so affected by them and their families.  Maybe it is because they are my partners on this journey, some of them were my strength at diagnosis when I felt so alone and confused, maybe because my reality is that their reality could so closely mimic my own.

Gracie continues to get sicker, which they say is par for the course, but it is so hard to watch your child be this sick.  She is no longer keeping any food or liquids down and has a hard time even being awake.  However on the good side they say it is great that she has not needed morphine and they expect her to start feeling better by next weekend, she still may not have an appetite but she will start to feel better as her counts come up.  So hopefully yesterday, today and tomorrow will be her bottom days and life will get more positive after that.

I apologise if this post is hard to read for some of you, but I said when I started this blog that I would write as close to how I feel as possible and right now this is how I feel. But because Gracie can pick herself up, I too will pick myself up and be ok.

Thanks for following.

Love The Sterks

Not sure what is next?

So we finished our last round of radiation this afternoon and all went relatively well, if you discount late transport guys (why we could not just drive ourselves is beyond me), panicked nurses at Foothills and some lost test results.  All of that aside we are glad that part is over, now we are not sure what the next few weeks look like.  Tomorrow we put her stem cells back and every nurse and parent we see that has been through this is telling us they will be thinking of us tomorrow, so not sure how ugly it will be.  From what we have been told by the medical team is that it is much like a blood transfusion, so therefore I thought it would not be that bad, but this pit in my stomach is telling me otherwise.  We also know that Gracie is going to be quite sick starting about Friday and lasting God knows how long.  We also did not realize that she will be on a PCA (patient controlled analgesia) which basically means she will have morphine hooked up to her IV where we can "push the button" as they say.  So we are not sure what to expect going forward.  Gary and I have decided that until Gracie's levels are high we will be allowing no visitors out of respect for Gracie as she will clearly not feel well (who wants people around when you feel like crap?) and we don't want any more fevers or infections if we can at all help it.
Will keep you posted as time goes on, although we anticipate a long haul, I will write when I am up to it.

Once again thank you to all of you who are on this journey with us.

Love The Sterks

Transplant here we come

Our five days off was great, not long enough mind you considering that we ended up back in here all day on Thursday as Gracie had some sort of allergic reaction to something.  Sent us in to a wee bit of a panic as we didn't know initially what it was. 

We were admitted last night in order to start the transplant procedure, which will consist of Gracie getting a bunch of different antibiotics, steroids and one chemo drug today all in preparation for the start of her radiation which will be tomorrow morning and continue twice a day for three days.  On Thursday, which will officially be our "day zero", she will get her stem cells put back.  We will spend today learning about all the protocols that go with transplant therapy, i.e.: she needs to be bathed everyday (this probably sounds like a no brainer to some, but when you are dealing with broviac lines bathing can be a major undertaking), her bedding needs to be changed out daily, her stuffies (oh oh - not the Bunnies) need to be washed regularly.  She is limited on the things that she can eat, i.e. no berries or grapes, no granola etc..etc.  and if you know Gracie these things are her favorites.  But to be truly honest I kind of expect her to stop eating all together, so I am not sure on how much of an issue this will be.  And well I believe that this is just the beginning of the diligence that must happen over the next 4 weeks and beyond.

We were also told last Thursday that they cannot give us any odds on this working.  It could go either way.  We will not be out of options if that is the case, we will just move to a donor transplant.  But they will wait about 3 months from the end of transplant to do a PET scan, so we will do out best to live as normally as we can in that time and not focus on anything beyond that. 

Hope you all have a great month and hope to see some of you in August!!

Love

The Sterks

Get to go home for a few days!

I was just informed that we will get to go home tomorrow (of course barring anything unforeseen).  We have to be back in on Sunday, but at least we get to be at home all together for a bit and get to sleep in our own beds for 5 days, we'll take it.  Gracie's levels are still climbing, slowly albeit, but climbing nonetheless, therefore we will be restricting visitors over the next week as we do not want ANY more delays going into next week. 

I also hear it is going to climb to the high 20's over the next few days so that is nice!!  I will be spending my afternoon scrubbing down Gracie's kiddie pool and picking up some Glad cling wrap so that she may enjoy it over the next few days...a little bit of normal!

So thanks for riding our roller coaster.

Love The Sterks...

Another good day

So Miss Gracie is doing so well, she has tons of energy and is sleeping well and of course eating like, well herself, which is constantly.  Her ANC (immunity level) and her WBC are still low but climbing slowly so that is a good sign.

I was able to go out to a friends birthday party last night and it was great to be out.  Although it gets a bit awkward at times as I really don't have anything else going on in my life so it makes small talk difficult.  It is times like those that show me how much cancer touches everything in your life.   So if any of the people I ran into last night read this blog, I didn't mean to appear distant, it just can be difficult sometimes.  But thanks for the laughs, especially you Kira, I haven't laughed out loud like that in a while, much needed.

We have also met some new friends who are across the hall from us.  He is a teenage boy who is so strong and brave he is an inspiration to us all.   It is so nice to be able to share with people who are living the same nightmare, especially for me being someone who loves to laugh, when those people have great attitudes and wonderful senses of humour.  His Mom carries herself with so much confidence and grace, although our secret club knows that the ugly cry is always lurking underneath. I am stealing this from her blog, so I hope she won't mind, but it is really nice to meet these people although you always wish you never had

I have added some more pics of Gracie in the bath last night.  Gary was clearly having fun with doing "the hair"!!  Thanks Daddy!  Although she will probably kill me later in her life for making these public!

Take care

Love The Sterks

God listened

So our roller coaster life continues, I walked in today to find Gracie racing around the unit on her bike (a green adopted trike that is on ward), now Gary and I had talked this morning and he said she was feeling better, but this was incredible.  It is always so healing to me to see her acting and feeling well.  We met with her Oncologist and he has no explanation as to why her fevers started and why her counts dropped and then recovered all on their own.  As of today she has not spiked a fever in over 48 hours and her counts are rebounding.  Why??  Nobody has a clue.  Her bone marrow did show some small signs of the hemophagocytosis but no progression of the lymphoma so therefore we really are not that concerned about the hemophagocytosis as we hope that transplant will take care of this.   She has once again managed to stump everyone here as we still have no idea what it was that brought her down for the last week.  This, as you all can imagine, was not what anyone was expecting especially her medical team. 

So yeah for us, we are off isolation and Gracie is naturally back in the fridge where she always seems to be when she is feeling good.  So I really do feel as if God listened and we dodged a bullet.  We are still not out of the woods as our first hope is that Gracie's counts continue to climb and she does not contract anything else between now and July 3rd as that is our new transplant date.  Once we get there then we can look towards the light at the end of the tunnel once again.

Thank you to all that continue to ride this emotional roller coaster with us.  Without you all this would be too much to bear.

Love

The Sterks

No more light

For the past month or two I felt that we could finally see the light at the end of the tunnel.  But after meeting with Gracie's oncology team today, that door at the end of the tunnel just slammed shut.  Basically they are pretty convinced that these fevers are caused by hemophagocytosis because although the fevers are dying down now, her blood counts have tanked, she is basically at zero which means she has no immune system.   The prescence of the hemophagocytosis further leads us to believe that Gracie's lymphoma is active again in some other parts of her body that we cannot see.  This is worse than I ever expected as more often than not, when Gracie's lymphoma is accompanied by hemophagocytosis it is fatal. 

On the good news front we have most likely caught it early enough that hopefully it can be controlled and expelled by transplant therapy.  However we have been told that if her bone marrow is compromised than we will need to look at alternative therapies.  We will know this as of Friday, we hope.  I am not up to chatting these days so I will update this blog, but please forgive me if I do not return your calls at this time, I just am not up to it.

Love always,

The Sterks

Scary few days

So I am not going to confuse you all with a bunch of medical terms therefore I will try to keep this as much in lay mans terms as possible.  Just remember if it sounds confusing, it is.  When Gracie was first diagnosed she had a syndrome called hemophagocytosis show up in her marrow.  Now this can be caused by a few things, infection, genetic disorders and the like, and is often complicated by T-Cell Lymphoma.  When combined with Gracie's disease it is quite serious.

Last Friday Gracie developed a fever and a rash for no reason as well as her counts dropped to almost zero on Sunday.  Her Doctors are now quite concerned that the combination of these things may be due to the hemophagocytosis recurring.  We are still holding out hope that they are caused by some weird virus and are doing all the tests to determine a virus and which one.  However Gracie's fevers are still not subsiding.  If we cannot get 24 hours fever free, basically we need her to have the next 24 hours fever free, we will have to put her under again and do another bone marrow aspiration which will take place on Friday.

Needless to say that our transplant has been put on hold indefinitely until we can find the source of these fevers. 

A cute picture

Some pictures...the sunglasses pic...she had just finished her smoothie so she has a "smoothie stash"...this picture makes me feel better...  also some other odds and ends from the last few months.  Thought I better get some "hair" pictures up here...:)

Delayed

Well it is pretty clear to us that Gracie is sick, we are thinking she has some sort of virus, that they are having a little problem identifying (and yes this is scary for us).  How does she catch these things?  Well bring on the guilt again, we tried to be as normal as possible so she got to go out on passes the past week so we took full advantage.  So now did she catch something from her cousins?  Something from the play areas in the hospital, The Hospital playground?  It is so frustrating because you think you are doing her some good trying to give her some normal life and then you get hit with stuff like this.  I don't know if I will ever get used to having an immune deficient child.

Anyway we will power through and now hope for the beginning of July and pray that nothing else sidelines us. 

Take care,

The Sterks

Delays and more delays

Well we have been in here over a week now and yesterday I was starting to think that things so far have gone rather smoothly, well that was at least until yesterday.  Unfortuneately Gracie's fevers came back despite being on two different antibiotics for over 9 days.  We are not sure what is causing the fevers and Gracie herself feels fine, she is just hot.  And when I say fevers I mean 40.9 degree fevers which is crazy.   So we have been delayed to Tuesday at the best sceanario and if her fevers do not subside in the next 24 hours then we will be delayed to the beginning of July.  This is scary and frustrating to say the least, we were gearing up to go through the next month, which would most likely be one of the worst months of our lives, only to be told that we have to wait another two weeks is devastating to us, not to mention being terrified of not knowing what is causing her fevers.

I wish I had someone to be mad at, I wish I could vent all this anger at the right person, if it only could be that easy as there is no one and nothing to be mad at.  But again I feel like I have been punched in the stomach and I am not sure, anymore, if I will know how to live without being afraid all the time, I wish for Peace in my life and I wish Gracie could have some sort of normal 2 year old life.   As we head into summer, Gary and I are sure never to make too many plans as they most often get cancelled, but the two things we did want to do is have a good visit with some friends from the States and go to Christina Lake for a week, with the delays now, both of these things look like impossibilities.  It seems so selfish to be worried about cancelling things like this, but this is what sickness does, it sucks in your whole life, there is not one area it does not touch.  So I am more angry about that than actually having to go without, I am angry that there is nothing it leaves alone.

Will keep this posted with what we know.

The Sterks

We are moving forward

So although Gracie's PET scan still shows some activity it has been discussed that we should move forward to transplant. The PET scan technology is so new that they don't know how much to realistically rely on it with regard to Gracie's disease so Gary and I are most comfortable with proceeding ahead as per their recommendation as there are also so many side effects from chemo. And I honestly think that they are guessing as to what other combination of drugs to give her that will warrant a better result. So it looks like we will start sometime next week, as soon as we can get this infection under control. That will most reasonably put us in here until mid-end July.

It will be a hard month as she will be really sick, as anyone who has gone through radiation can tell you. The problem with the little ones is that they will not force themselves to eat so she will have to be under 24 hour care. They will put her rescued cells back after the third day of radiation and we then need to wait for her immunity to recover and for the complications to subside, which is usually 3 to 6 weeks.

Believe it or not what Gracie is about to go through is easy in comparison to some of the other kids we know and we appreciate and hold on to that daily. Will keep in touch.

Love The Sterks

It's a go

So we met with Gracie's transplant

So we thought we would be home

Gracie got home went to bed around 6. Then we got a call from Childrens about 1 am to bring her back in. She has some kind of crazy virus,,,oh shit. So off we go, however there r no beds, so the young doc says go to emerg... We laughed, really hard. NO! Get us a bed or we r not coming... Just a funny story...and a reminder to get an Advocate for ur health care. Bad bad spelling from my phone... Keep ya pOosted.

No info on scan yet

We thought we may have been able to receive the scan results today, but no luck. We did however spend the day in clinic because Miss Gracie spiked a 40 degree fever this morning. We are not being held overnight as her levels are high enough, but we need to return tomorrow for another dose of Antibiotics and hopefully tomorrow we will get the results we so desperately want.

Talk about guilt, which we have all the time anyway, for taking her camping. We have, however, been assured by all Docs and Nurses that most of these fevers in chemo kids are caused by internal parasites. Well not that it makes us feel better, but good to know.

Hope all is well with everyone, will post results as soon as we can.

Fingers and toes crossed

Well the PET scan day is before us.  We are in at 230 tomorrow afternoon and will be done by close to 5ish I would say.  Then we are off to try and have as normal of a weekend as possible camping!  Yeah...it is a way for us to be close to home while still feel like we are away.  It will be nice to have some good people around to help us keep our minds off of the "waiting".

I will update this as we get the results which we are hoping will be Tuesday.

Happy weekend, here is to getting good weather and even better scan results.  Also thank you to the people that have rearranged their schedules in order to give us some of their time during our weeks of normal and for everyone who has been sending their messages full of hope and love.  Means the world to us.

Love The Sterks!

Nothing New

So we have managed to have over a week at home!!  Gracie is full of energy and eating like a linebacker.  She was fortunate enough to have a visit from her Oma and Opa over the Victoria Day long weekend and loved it.  After a day or so I realized that she definately gets her "goofy" from her Opa, oh to stay that young at heart when you are in your 70's is a lesson to us all.  There is just nothing grumpy about that man.

We are still on track for our June 3rd PET scan and are anxiously awaiting.  When you are on a cancer journey outwardly your life looks realtively normal, minus the hospital trips, clinic visits and bald heads.  But the truth is that we live in another world just underneath the surface, a world filled with anxiety, fear and loneliness.  A world that everybody knows about but does not want to really look at as it is too scary.  If I can be so bold enough to use an anology from another friends recent birth announcement having your child diagnosed with cancer is like being on a flight to Italy and landing in Darfur.  You are immediately dropped into a battlezone and you literally start running for your lives.  Everything you thought you knew about life is suddenly changed.  On the positive you start looking at what is truly important and it has nothing to do with driving a new Volvo.

I am going to steal another quote from this friends announcement; if you think we are strong and special people, you are wrong we are normal people just like everyone else, its just that the ugly cry is not for everyone.  So thank you to those people who do not make Gracie's cancer the big elephant in the room when I run into you.  It is not a taboo subject and I promise I will not fall apart if you bring it up, it is part of us now and will continue to be for some time to come as even if we get to where we want to be which is cancer free, we will always wonder "will it come back".  We will refuse to live our lives in the clutches of that nasty devil, but we will always wonder and worry, which is one of the things that cancer does to you, it changes your thinking forever.

It is with a heavy heart that I also mention our friends the Amsing's who did not get the test results they were looking for.  May God guide you through this difficult path and may you be surrounded by the right people who will help you find some peace and understanding. 

And to the new Mother whose quotes and anologies I have stolen, I always thought Holland would be a wonderful place to not only visit but live.

Namaste people!  We love you and appreciate you everyday.

The Sterks

Home sweet home

We got sprung last night around 7, which was a welcome relief as we expected to be there until this morning.  I figured out that in the last month we have been home, all together, for 5 days total.  And for those that are shocked by this, for some families that is a lot of time at home.  So I feel blessed that we have such a great facility so close to us that we get to have some time at home together, however short.  This is what I am grateful for today.  And some of the nurses have nicknamed Gracie, "Tinkerbell", because honestly she kinda looks like a Tinkerbell.  We are truly grateful for ACH and everybody in it.

Gracie is doing well, she is almost back to her usual self, however I am beginning to understand what some of the other parents were trying to tell me as the better part of our day is spent in front of the fridge, or a different cupboard or two saying "do you want this, do you want that" as she points and usually changes her mind before you even pull anything out.  But for the most part she is eating and drinking, so this is good.  She spent the majority of her day making mud pies with her new "mud pie makin kitchen" (thank god its nice out), anyone hungry?

We are glad to be home and are now in a holding pattern until we run some more tests which with any luck will be completed by June 3, we will then know where we are headed.  So hopefully (touch wood) there are no line problems, fevers, colds, diaper rashes, or any other nasty virus that comes our way and we can have some peace for a few weeks.

Take care,

Love and happiness to all

The Sterks

Here we go again

So our time at home was short lived.  We are back in tomorrow morning for our 12th round of chemo and hopefully with any luck we will be home Sunday night.  I sometimes wonder when will it end, but then I check myself and remember that thinking too far ahead has some dire consequences.  I just hope that after this round she does not get as sick as she did last time, this is my future hope for today.  That way we will not have to spend the whole three weeks in hospital.  My second hope is that these last two rounds of chemo has done what it is supposed to and her PET scan shows as much recovery as we need to get to radiation (aka transplant therapy).  If we get there then maybe we can look further ahead.

I think back to the last few years of my life when my only problems were will my business succeed?  How much more weight do I need to lose in order to get to pre prego weight?  My hope for all of you is that your problems stay small and your dreams stay big and that you wake up every morning and no matter what you are facing, that you choose to be happy.

We can't thank you all enough for being on this journey with us.  I know some of you feel like you aren't doing enough, but you are by talking to me when I need to vent, for being there for us when we ask even if the timing is not convenient, and for continuing to read this blog, you are in it with us and we can't express our gratitude enough.  We would be lost without you.

Love The Sterks.

Here we go again

So our time at home was short lived.  We are back in tomorrow morning for our 12th round of chemo and hopefully with any lick we will be hom Sunday night.  I sometimes woder when will it end, but then I check myself and remember that thinking too far ahead has some dire consequences.  I just hope that after this round she does not get as sick as she did last time, this is my future hope for today.  That way we will not have to spend the whole three weeks in hospital.  My second hope is that these last two rounds of chemo has done what it is supposed to and her PET scan shows as mych recovery as we need to get to radiation (aka transplant therapy).  If we get there then maybe we can look further ahead.

I think back to the last few years of my life when my only problems were will my business succeed?  How much more weight do I need to lose in order to get to pre prego weight?  I don't mean to diminish everyone's problems, as I know first hand that everyone has their

Happy Mom's Day to Me!!

Well Gracie's swelling went down, along with her fever, diaper rash is almost gone and no more diarrhea.  Whew, that's a lot.  Anyway so we got SPRUNG today at around 1.  So we are home all together eating ice cream, just the way it should be.

Happy Mom's day to all.  And as always, we so appreciate every one's thoughtfulness, couldn't get through any of this without you.

Love The Sterks

So much for going home

So Gracie was back to her regular self yesterday so we thought we would get sprung today, but alas her and I woke up this morning only to have Gracie's right side of her face swollen up like she has the mumps. She cannot even turn her head, poor little girl.  So needless to say we are staying, she has some sort of infection in her lymph node on that side, or so the ultrasound showed.  So maybe tomorrow????  Fingers crossed.

Love The Sterks

Tuesday

Well Miss Gracie has a virus, its official.  On the good news front it is a common form of children's influenza.  On the bad news side this is on top of a nasty diaper rash and diarrhea, which are a result of last week's chemo.  This goes along with mouth sores and a fever hovering around 39.  So she is a pretty sick little girl who is now on some morphine to control her pain and hydration, as she won't eat because of the mouth sores, some antibiotics to control any possible outbreak of pneumonia, and those are just the new drugs which are on top of the regular four drugs she takes daily.  Don't even get me started on the chemo drugs. 

She is getting her blood transfusion as I write this and due for platelets tomorrow, which means she dropped sooner than we thought, this time around.  This sucks, any of the other cancer families that are following this blog will agree with me, I am sure, there is no other way to describe this other than "it sucks".  Most of the time I have to stifle my screams as I think if I started I wouldn't stop.  I think back to early last year when all I was worried about was which vaccinations I should give her.  Going through this is something, us "Cancer Families", as we are referred to up here, never asked for and we don't want to be doing this, but we will do whatever it takes to make our children well and keep them happy.  So when you think we are your hero's and that we are the strongest people you have met, remember we are not, we are just another human who wants to scream and fall apart, it just happens not to be an option for us as we have bigger issues to deal with than ourselves.   So thank you to all of those who have called me their hero, but I do not deserve this title, the true hero, in my story, is a two foot tall blond Angel who can't wait to be a regular kid.

Fevers

Well we woke up Sunday to Gracie having a fever, she was still in good spirits and such, but by Sunday night she was at 38.5 so up to Hospital we go.  We were released a few hours later as her fever had come down and her counts were good so they let us out.  Sunday night was horrible she developed this persistent cough, so by Monday morning her temp was back up to 39.5 so away we went.  She has now been admitted as we don't really know what is causing this.  She is clearly not feeling well and has been lethargic and sleepy most of the day, this is definitely not like Gracie girl.  So we will continue to monitor her while we try and rule out pneumonia and other viruses.  I am not sure when we will get to go home at this point, but when she is clearly that sick, it makes us feel better to be in there.  But with any luck it will be a mild cold and she will power through.

Love The Sterks.

We're home

Ok so she has a urinary tract infection and a nasty cough, but her temperature went down and her levels are high so we got to come home, with of course, a plethora of new antibiotics (this is of course on top of the ones she already has to take in order to prevent any kind of pneumonia from the line insertion - and yes don't think that on top of everything else, this bothers us the amount of antibiotics she takes, but hey you do what you have to).  Although we have to stick close to home (like we ever go anywhere these days) as they are still testing her blood cultures and if those amount to anything we will have to go back.  But all that aside it is good to have everybody at home.

We will have to go back on Thursday for our regular clinic day and then back in the following Monday as she will most likely need another blood transfusion along with platelet's.  But hopefully with any luck we can be home until then.

I have posted some pics of her on her b-day and in the hospital.  I hope everybody has a great weekend.

Love The Sterks

Some more bumps in the road

Well Gracie has not fully recovered from her "hell" night and has been sleeping most of the morning, however her fever continues to climb.  As well as she has managed to pull out part of her line, so they are trying to determine if she will need another surgery to repair it.  "Argh", they really need to come up with a better port/line system for the little kids.

So because of the fever we are now in isolation and no idea as to when we will be allowed to go home, I anticipate Monday.  So have a good weekend all...

The Sterks

Round 3

Well we are into our 3rd session of our 4 day chemo.  This time she has not had it as easy, with last night being pretty hard on her, she was up getting sick every hour throughout the night, but she didn't have much to bring up as she has not been eating all that well.  She now has a fever of 38.5, so we are hoping that this is only because of last night and not anything else.  If it does not come down it is doubtful that we will be going home today, but will wait to see what her Oncologist says later on. 

We are still unsure as to how the next few months will go for us, but will keep this updated as we find out.  This has to be the hardest part, the not knowing what will happen from moment to moment.  It makes planning even the simplest things hard, as it is most often we end up cancelling.

Thanks for reading..

Love The Sterks

After a long day

Well after a long day of audiology tests and getting Gracie's new central line put in (lets hope this one doesn't break so we don't have to do that again!) we have decided after some lengthy discussions with Dr. Campbell that we will wait until Monday to start chemo.  This way Gracie can have a normal 2 yr birthday with her cousins.  God I think back to her b-day last year and it seems like a lifetime ago.

Anyway as usual Gracie troopered through this surgery and is doing fine.  Dad has gone for a beer and I am going to bed.

Love
The Sterks

Another setback

Well the results of the PET scan are in and we do not have what we wanted in order to proceed to radiation.  They need almost a complete response before they go ahead with radation as it is most effective that way and because it is such a harsh treatment they don't want to have to do this more than once.  We have improvement but not the response everyone was hoping for.  So we will be proceeding to two more rounds of DHAP chemotherapy starting Thursday and being in hospital until Sunday.  Happy 2nd b-day Gracie :(.

Keep your fingers crossed that we will get the results we are so deperately wanting.  We will now be looking forward to mid-end June before we will know.

Take care all and we will keep you posted.

Love The Sterks.

Health Care in Canada

Down time over

Well our couple of weeks of down time is winding to an end.  This week starts the beginning of the endless testing and appointments, beginning on Thursday, with Friday being our longest worst day.  Friday she has to have her kidnesy's, ultrasound and her PET scan.  It will be a long long day as she will not be able to have anything to eat or drink for the better part of the day, or at least until the PET scan is over which hopefully will be around 3 p.m.  The PET scan results are big, as if she shows alot of disease then we will be unable to proceed to radiation and if it shows minimal, then well we proceed to radiation, kind of damed if we do and damed if we don't kind of feeling.  We will hopefully get those results early next week, so keep your fingers crossed. 

It was nice to see who we were able over the last couple of weeks but now it is back to business!

Take care and we will keep you posted.

Love The Sterks

Grateful

Driving home last night from the hospital I was actually happy, go figure.  I realized that I now really live day to day and yesterday I was so grateful that even though we had an 11 hour day up at Children's we got to come home, we didn't have to be admitted and spend the next four days up there. 

This led me to think about the other things that I am grateful for.  One of our Nurses, Ellen, told us about this man from Vietnam who was so thankful and appreciative that his son was getting treatment and that he did not have to grease the palms of the powers that be in order to get that.  He was sad because his family and friends back home would not be so lucky. 

I am so grateful to live in a developed country where Gracie can get treatment for a disease that without would end her life.  Even more grateful that in Canada most of this we do not need to pay a dime for, if we were in the States, depending on medical coverage, we would be broke, probably have lost our house by now as the cost of the chemo drugs is SO expensive, not to mention the diagnositic testing. 

I am grateful for the nurses and doctors up there, even though we have had our frustrations with the system, the individual people we deal with are amazing.  I am grateful to the nurses up there who see you at your worst and still manage to give you a hug at the end of the day and tell you all the things they appreciate about you. 

I am grateful that I have a partner in all of this who is as invested as I am.  Lastly I am greatful to be blessed with Gracie in my life, such a big personality who teaches me every day how to take it moment by moment, and laugh at any chance you get.  However that being said I think we will need a visit from Nanny 911 when all of this is over :).

Be grateful for the greatness in your life as it is all around you...

Christa

Another clinic day

Well our suspicions were right and after getting Gracie's blood work back at 1130 this morning she had barely any platelets and her hemoglobin was minimal at best. So here we sit. Her blood didn't come in until 345, although we were able to vet her platelets done at 3. So the good news is that she is not nutripenic and no temp, so we will not be admitted, we just won't be home until tonight at around 8 or 9.

Ciao for now...

Nice day in Calgary

Well we have been allowed to be fairly normal this week as Gracie's levels were well over 16,000, which in laymans terms means she has a stronger immune system than most average people.  This of course is all due to a drug which we inject nightly called GCSF.  I suspect that she is tanking today, being Sunday and that we will require another blood transfusion of plateletts tomorrow as I can see she is brusing quite easily and her lips aren't quite as pink as they should be.  This is how it went her last round of chemo though, so I am not too concerned.  We will go back into clinic tomorrow am for blood counts. 

We met with her radiologist on Thursday, pretty good for the most part.  I kept laughing though as my cousin Chris (who happens to be a ER doc) gave me some great advice last week, some of which was "be prepared as people who go into radiology do so because they don't like people".  He was a really nice guy, but fairly odd.  If you can take humour out of a crappy situation then you can appreciate that I had a hard time not laughing as I could hear Chris' voice as if she were sitting beside me.  So we should be good to go starting May 4.

Other than that is has been a great weekend with a TON of snow yesterday, but that turining today into one of those steller snowy spring day in Calgary.  Which if you haven't experienced it, the city is beautiful with the trees hanging heavy with snow and everything being white, this along with a bluebird sky, the sun shining hot makes for things in fairy tales.  I love days like these, I just wish Winnie and Kurt were here so we could spend the day building one of their great snow forts.  We will setlle for playing on the slides into snow banks and sled riding.

All the best to everyone!