We are home

After a few harrowing nights we are home.  Gracie did not handle this round of chemo as well as she has handled things in the past.  She was quite nauseous both Saturday night and Sunday.  She is sleeping alot during the day as she is up alot during the nights. 

We were really glad to be home last night, only to be called back to Children's at 7 p.m. as they "forgot" to give one of the chemo drugs, this along with a mix up on the chemo drugs on Friday was enough to make me want to lose it.  But more than that it is another added guilt as I felt we did not inform ourselves properly on what drugs she was getting, when and how much.  This protocoal was so much more complicated than the ones in the past, but it goes to show you have to be so diligent all of the time.  So add that onto my ever growing list of "mom guilt". 

All in all she is going fine, but I do expect some blood transfusions late this week or early next as her nutriphil count will tank as it did last time, this time I will be prepared.  I just hope that it doesn't mean another week long hospital stay.  As far as Gary and I, we are hanging in there.  I am not handling things as well as I did last time, but I guess this is to be expected.  I am just not used to being this down, this scared, this angry and feeling this helpless for this long.  Hopefully some time will make this better. 

Hope everyone is well, thanks for checking up on us.

Much Love,
the Sterks

Pictures!

One more day to go and then we are home...thankfully it has been a long haul this time...thought I would share some photo's.....

Round 2

Well after a really long day starting the first day of Gracie's chemo in clinic, yesterday we were finally given a room at around 6 p.m.  Our night went well enough, Gracie did really well, her nausea was limited to one bought and this morning, well she is back to having us all wonder how she could possibly be sick.

We will be here until Sunday, barring any complications.  Gary will come up tonight and stay with her.  Since we have begun taking turns things are so much better for him and I.  Anybody who has spent any kind of time in a hospital will tell you that they are not "restful" places.

I saw this quote in one of the resource manuals provided to us by the hospital and it is a quote that hangs in Massacheusetts General Clinic and it is a Parents response, I thought is was most appropriate in describing how Gary and I, and most all parents of critically ill children are feeling most of the time.

"How do I feel? Don't ask!...aside from nervousness, irritability, exhaustion, faintness, dizziness, tremours, cold sweats, depression, insomnia, muscle pains, mental confusion, internal trembling, numbness, indecisveness, crying spells, unsocial, asocial, and anti-social behaviour....I feel fine....thank you.'

A long day

Two down three to go....

Yesterday's harvest went well...really well, in fact her levels were so high that it only took 2 1/2 hours and they managed to get 3x what they were after.  Which in laymans terms means that when we do the reinsertion her recovery should be shorter.   She was a trooper as usual, although they don't put them under anesthetic they just sedate them and she was determined not to go to sleep, but other than that she was calm through the whole thing.

I really think she may be a doctor or nurse later in life as she will not let the nurses clean her lines unless she gets her own alcohol wipe and helps.  It is quite funny.  She has also, thanks to some wonderful nurses, learned some new dance moves, as in the Hokey Pokey, however she gets this mixed up with "Head, Shoulders, Knees and Toes" and "Ring Around the Rosey so she ends up doing all the dance moves at once, hilarious...

We get to go home today and will be discharged around 4 so it will be good for all of us to be at home for a change.  We will then get readmitted on Thursday to do Gracie's next round of chemo and will be in until Sunday.  Then, barring any infections or delays, we will get to be at home for most of April.  Then readmitted for the month of May.

Hope everyone is keeping well, and so do enjoy all the messages and thoughts we are receiving from people.  We have some of the best friends and family around....

Love to you all...

Wednesday update

So after a few days of blocked lines, many antibiotics, one really bad night in the hospital (Monday night, Gary stayed on Tuesday night to give me a much needed sleep break at home) and numerous blood checks it looks like we are good to go for Gracie’s Apheresis tomorrow.  Her CD34’s, which is a protein molecule they track to see if she would be ready for her harvest, are in the triple digits which is great as they would have been happy with double digits.  This could mean that her time hooked up to the machine is shorter, however listening to the previous advice of letting go of all time parameters, I will just hope it will be done in one day.  We will be allowed to go home on Friday barring any other setbacks, which we can foresee none.  Then back in on Thursday for second round of chemo.

I would like to thank everyone for all of their offers of help and I know that people want to do something to help, however there is nothing to do at this point.  Gary, Gracie and I (two G’s and a C) are just going to do some hunkering down as a team and get through.  Just remember we too feel helpless.  Sometimes I ask myself “what have I done so wrong in my life to deserve this? (because Gracie didn’t have time to do anything wrong so it must be me)  Then I get everyone’s heartfelt messages, thoughts and prayers and then I think “what did I do right in my life to deserve this many wonderful people in our lives that love us?”  The circle of people that are embracing us is unbelievable and although I can’t possibly respond to everybody right now, I just want people to know how much I appreciate every one's efforts to make this journey better for us.  Thank you, thank you…

Yucky Monday

It is most of the time, but especially days like today I really really miss my Mom.  Gracie and I got up this morning and went to clinic for our regular bloodwork, we returned home at about noon only to be called by the clinic advising us that we had to return asap as Gracie needed blood, her hemoglobin was tanking.  So had to wake her up from her 10 minute nap and drive back to clinic where she proceeded to have a blood transfusion, which takes about 3 1/2 hours.  2 hours into it her tempature hit 38.4 so we were admitted.  We most likely won't be released until Friday now as blood cultures take 48 hours to come back which would put us at Wednesday and Wednesday we are being admitted to do her Apheresis(stem cell harvest) on Thursday, this is if we aren't sidelined with infection.  We are again on isolation so again no more than two visitors per admission which would be Gary and I. 

When we first began this journey I was given a great piece of advice from Rob Amsing who said if I "let go of all expectations of time things would go alot smoother", so I need to hear that again as here we are again cancelling everything that we had this week, this is why I am making very few if any plans with people these days as it is as stressful to cancel things as it is to be in here.

My new mantra:

May my family be free from fear and harm;
May we be content with what we have; and
May we be at peace with what comes...

(thanks Laura)

I will keep you posted.

Love to all...



Clinic Visit - what's next?

So we just got back from our first clinic day aftr the new chemo.  Gracie's counts are low, but this is to be expected.  Lock down and hand cleaner are the order in this house from here on in.  However she has big energy which is a good sign.  So we are home for the weekend and then back up on Monday and Tuesday mornings to do blood counts, if these counts are good then we are admitted on Wednesday and will have the stem cell harvest on Thursday, if they get enough which would be about 5 million per kg, then we can go home Thursday night barring any other setbacks.  If they don't get enough then we will stay overnight again on Thursday and do it again on Friday.  Then home for the weekend - yeah!   The following week we will be in for another round of chemo starting on the 24th so we will be in hospital from the 24th to the 27th.  And of course this is all if we have no delays and dependant on counts.  Well at least we get somewhat of a schedule for two weeks!  I will take what I can get.

In regards to my last post Gracie will need transfusions and alot of them apparently, also they will need blood to prep the stem cell harvest machine.  Gracie's friend Charlotte has needed over 30 blood/platelet transfusions this year alone.  So PLEASE dontate, this is the single best thing anyone can do to help us right now.  For all of you who donate regularly or who have already donated I am forever grateful.....because Gracie could be one of those kids sent home delayed if they don't have enough blood.

Allison, I stole this from your blog, thank you for posting on yours as well.  And I am glad you are at home!

Here are some interesting blood donation tidbits:



Click on the chart to make it a bit bigger.


One blood donation could save three lives.

Blood is perishable, and has a 42-day "best before" date. That means we can't stockpile it for future use, and why we continuously need blood donors. While 42 days is the maximum shelf life, most donated blood in Canada is sent to hospitals within a week. Platelets only have a 5-day shelf life, and make them a constant challenge to supply, particularly after a long weekend.

One blood donation could save three lives.

Blood is perishable, and has a 42-day "best before" date. That means we can't stockpile it for future use, and why we continuously need blood donors. While 42 days is the maximum shelf life, most donated blood in Canada is sent to hospitals within a week. Platelets only have a 5-day shelf life, and make them a constant challenge to supply, particularly after a long weekend.

The total experience takes about an hour. This involves the health assessment and recovery time. The actual blood donation only takes about 5 to 15 minutes.

A healthy person can donate every 56 days. (Seven times a year)

On average, every 60 seconds, someone in Canada requires blood or a blood product. Canadian Blood Services serves over 800 hospitals across the country. Demand for blood is growing steadily by 2% every year. That may not sound like much, but this year that means we need an additional 17,000 donations.

Between our 41 permanent locations in major cities across the country, and the hundreds of mobile clinics we operate, there are over 20,000 blood donor clinics per year. Chances are there is a blood donor clinic somewhere near where you live, work or play. To find one near you, use our handy Clinic Locator, or call us at               1 888 2 DONATE         1 888 2 DONATE.

Things you can do to help

My friend Allison, who also has a 2 year old going through her own journey up at Children's once said when you take your sick child up to Children's you come home with 20 more children in your heart.  This is such a true statement.  As I mentioned before these kids have my utmost respect, us adults could learn so much about living by watching these children fight for their lives.  This being said we have the most amazing circle of people in our world and we could not do this without all of your thoughts and prayers, it means more than you think it does.  People have been asking what they can do so this is something you can do, in this week alone up at Children's I watched two to three kids be sent home not getting thier blood transfusions because they ran out of blood, so you can go to your nearest blood donor clinic, which you can find at http://www.blood.ca/, and donate some blood.  This doesn't matter if you are in Calgary, Vancouver, Toronto or anywhere as it will make a difference in someone's life. 

And for those who have been asking about marrow donations; Gracie's cancer has not to date been in her marrow, we did another marrow biopsy last Tuesday but we would be surprised if it did show up there now.  Gracie's cancer is in the fat cells of her skin, hence the term "subcutaneous".  This makes hers very rare, in fact she is one in only 18 cases documented in the world, and hard to watch as we do not have one tumour or bone marrow to follow.  The only testing we have is PET scans (positron emission tomography) which the only one in Calgary is at Foothills (Edmonton has 4 go figure?), which if anything on those come back "lit up", as they say, then we do a biospy on that area.  So the other thing you could do is if you had a few extra million lying around, you could buy the Children's their own PET scanner :), or lobby your MLA.

Gracie is having a good day today after a not so good night, but if you want to laugh try dealing with a toddler on steroids it is interesting to say the least.

Keep your thoughts and prayers coming, like I said they mean alot, and donate blood!

Love and our utmost thanks to all.

PS:  some pics of Thursday and Gracie getting her chemo...as you can see she finally got hair back, only to probably have it go again next week...

Going Home - we hope

So hopefully with any luck we will get to come home today.  Gracie has weathered her first round of chemo like the trooper she is.  Dr. Campbell said that if we gave these drugs to an adult we would be vomitting non-stop, so far with Gracie she has vomitted twice.  I had respect for children before but now mine is through the roof, not just towards Gracie, but all kids up there, they are so tough and they just take it in stride, they amaze me.  I am a basket case, but she is just laughing away, she thinks bunny dive bombing out of the crib is just the funniest thing ever.  So keep your fingers crossed that we will get to come home for a week at least and that Gracie gets no infections that will put us back in.  We will be admitted back on the 16th but here's to hoping we can stay home until then.

Some pics of Gracie lounging in the hospital

We are doing better at some point you get to a "ok let's go" attitude, you just want to fix your baby, so you are ready to move mountains to do so.  So also sorry to inundate but lets face it not alot to do in here....especially when you are not a big TV person (and I miss my PVR).

the Latest

Well its been a long day.  We started in here at 7 a.m. where we waited until 10:30 to get into surgery where Gracie had to have a new port put in, her broviac port will not be sufficient in dealing with her treatment going forward.  She now has a double "lumen" which will allow all forms of Gracie's treatment going forward, this should prevent additional surgeries in the future.

Where to start on Gracie's treatment without losing you in the medical jargon so in a nutshell, because Gracie's cancer is rare and now very "progressive" we will be proceeding to a DHAP protocol which involves four drugs given over the course of four days.  This will all have to be done on ward, so no more out patient for us.  We will do two to three rounds of this protocol.  After the first course of chemo we will attempt the stem cell harvest, this will depend on the mobilization of her bone marrow stem cells.  This will be done at a moments notice, but most likely around the 16th.  Once that is done they want to do another round of chemo combined with total body irradiation (radiation).  This is extremely scary for us as radiation in children this young causes all sorts of developmental delays and growth retardation. Then the final phase of the transplant of the stem cells back.

So that is the latest, we will be starting the new chemo starting tomorrow and taking everything else day to day.   We expect alot more infections and the such with this chemo so we will be in the hospital alot more this round and most often at a moments notice, so please if we are not returning calls this is why.

Thanks for caring and thanks for reading...I am exhausted and going to sleep...will update soon.