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