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!