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.