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