Back to the bubble

I guess I spoke to soon....

When Charlotte went in for her treatment and lumbar puncture last Monday, her counts were on the low side. I believe her platelets were 33, hemoglobin was 87, and neutrophils were .67. So not low enough to warrant a transfusion, and while we weren't in a bubble, we were 'careful'.  We weren't too surprised just because she had been sick with this stupid flu/cold.

The doctor wanted to give her body a break, so we were to hold off on her daily chemo for a week and do blood work on the 28th. Well, yesterday's numbers were platelets of 13, hemoglobin of 79 and neutrophils of .2! We were pretty surprised since she seemed so well, feeling much better, and just her happy self!  So, off to children's hospital we went today for two blood transfusions (platelets and red blood cells. for those who are counting, that makes 18 total transfusions now, 8 platelet and 10 red blood cells)). And, we are back in the bubble.

It's pretty normal for the neutrophils to fluctuate in the early stages of maintenance until they get the chemo dose just right. BUT, the platelets and hemoglobin, not so much, it's pretty rare to need blood transfusions in maintenance. Why did her numbers plummet so much? Not sure, it's likely tied to this horrible cold she has had and that she is super sensitive to her chemo. I asked "as long as it doesn't mean the cancer is back?". No, it's not that!  When she does resume her regular chemo, it will probably be at a lower dose.

So, 6.5 hours at the hospital, but Charlotte was amazing, despite being stuck in a room and not being able to go the playroom due to the cold. I was pretty happy to have a day with my girl since Stefan has done the last two hospital visits with her.  A little flem induced puke on the way home, and I hear "it's ok, it's just a little puke mommy".  What a trooper!

life in maintenance

Life in maintenance has been good - definitely better then the craziness of 2012.  It's not perfect.  But better.

Some highlights/lowlights of the past few weeks:

• We signed Charlotte and Nathan up for a couple classes at the recreation center.  They were signed up for a music class together, but Stefan took them to the wrong class by accident - creative dance.  Charlotte loved the other class so much - we decided to keep her in it!  She is also in a ballet class and absolutely loves it.  It is such a treat to be able to have her in these classes...with other kids!  It's so normal!
• I'm back to work.  I'm back 4 days a week and last week was my first week of a full return.  It wasn't too bad.  The kids have been fine at home with Daddy, but must miss me as I haven't been able to eat dinner all week without Charlotte on my lap.  I have heard many joyful "Mommy, your home!" from Charlotte - even on my days off!
• Stefan starts back next week!  He'll start in the classroom teaching.  He's just in three days this week, for 3 hours each day.  Excited to see how he does.
• We have a rugby girl (Jessica) who will be helping out with the kids - and they love her!  They will be in the dayhome they were at before Charlotte got sick on Mondays, and Jessica will help us the other days.
• The kids and I have come down with this awful flu (you know the one, runny nose, wet cough that just won't go away).  It's into it's 4th week now.  Nathan and I even had the flu shot, but it hasn't seemed to have done any good.  Luckily Charlotte hasn't had any fever so no trips to the ER were needed.
• The following story is gross - but a picture of how our normal is.  We went out to Whitespot on Friday for dinner.  Charlotte was eating really well (which she hasn't been doing lately), and then started coughing (this awful flu).  This was accompanied by a small puking session (which has been pretty regular for her lately - not sure if it's just her, or this flu).  Our little lady was quite discreet though, and we managed to clean it up - still in the process of cleaning - she dives back into eating.  That's our little trooper.  Luckily I don't think anyone in the restaurant noticed.
• Charlotte had blood work done in early January, and both her platelet and hemoglobin levels were low, but not low enough to warrant a transfusion.  As a result, she is covered in bruises - poor little thing.  (the low platelets cause bruises to appear quite easily and they tend to not go away as quickly)
• Charlotte's hair is growing back - looks like it will be a similar color to Nathans, light brown.  A sad goodbye to the dark brown locks of pre-cancer.
• She is back in for treatment tomorrow, lumbar puncture and vincristine.
• My brother and his family came over for a belated Christmas get together.  They were great company.  The grandparents bravely took on all 4 kids so we could have an adult dinner out - a first for us together so we had a great visit!  I also got some great game playing time in with my brother (thank you to our super duper spouses for letting us).  Dominion has been our game of choice of late, and we managed to get in about 6 games!
• I've started spin classes and thinking up some fundraising ideas in preparation for getting my butt in gear for ride to conquer cancer!
• We have been thinking about a future trip.  Possibly up to Whitehorse, or maybe even just Stefan and I to Vegas.  But when it comes down to details - I get a little anxiety and panic.  All in good time though I think - maybe by the summer we will all feel comfortable with a trip!  Right now I'm very content with being able to go to Superstore as a family and date nights at IKEA!  That's what 9 months in a bubble will do to you!

Family!

Go On

One of Stefan and I's favorite new television shows is Go On with Matthew Perry.  It's about a support group.  I think one of the reasons we love it so much is we can relate due to our support group experience.  Stefan still attends the brain tumour support group monthly.  I haven't been able to attend in a while - been a bit busy with something else.  It's probably just as well though.  There is another person in the group with the same tumour as Stefan, the same treatment path, but a year or two ahead of us.  There tumour started growing again and now they are doing chemo.  Hits a bit too close to home.  I'm kind of glad I haven't been attending as I'm not sure I could handle hearing it.  It's bad enough getting updates as it is.  For the past year - I have done my best to ignore Stefan's little problem so I can focus on Charlotte.  But hearing about this other person, as well as the disappointing news of a good friends cancer returning - it makes me want to hug my family a little closer, celebrate big the smallest of milestones, and run out and do Charlotte`s make-a-wish trip NOW instead of postponing a year.

Anyway - this post has turned a bit depressing  - so go watch Go On - it will make you laugh!

(PS. I get the irony of my post, with an underlying theme of embracing life, while at the same time, telling you to go sit on the couch to watch a sitcom for half an hour!)

New Years

For New Years, we took the kids to the Keg where they did fantastic, and we made it through the whole dinner without the help of any electronic devices! Woot woot! Our princess Charlotte has developed expensive taste and had lobster!

When we got home, we took a family photo, which has become a bit of a tradition for us.  After about 30 shots, I think we got one....

Stefan -  "Naaaathan" while attempting to restrain him.

let's sneak in a kiss

maybe if we tickle him we can get a smile

Nathan - "look at the camera"

round #4 - let's try singing 'if you are happy and you know it'

whew....this one will have to do!

For new year's day, we went down to Rocky Point for the Penguin Plunge which Stefan partook in.  We figured maybe a dip in the cold water can help drive that remaining tumour away!

Today at the Penguin Plunge - Stefan is still dry!

We are hopeful for a happy and healthy 2013, and wish everyone the same!

Thank you to everyone for all your wonderful outpouring of love and support through our second challenging year. We couldn't have made it without you.  I thought the following quote fitting, as we certainly have many bright shining stars in our lives!  We are thankful for all the blessings in our life, our love, our beautiful children, Stefan's 'no growth' mri's, and our wonderful family and friends!

When it is dark enough, you can see the stars.  

~Ralph Waldo Emerson

A special delivery

Shortly after Christmas we got a very special delivery to our door from Santa (via Yvonne 'Broeder' Ring THANK YOU!!!!):

Inside was the following letter, which I had to share with you because of it's wonderfulness and creativity:

 For Charlotte

Every year, on the day after Christmas,

The elves have a dance party that nobody misses!

Many wonderful outfits are ready just for,

The elves who are dancing all over the floor.

But this year we made a few too many dresses,

With no storage space they create quite the messes!

So we thought about who made our most special list,

And your name came up on the top of it!

This list is not one of naughty or nice, 

Of snips, snails or tails, or sugar and spice.

It holds only the names of the bravest and true,

And that my dear Charlotte, is what we think of you.

So we hope you enjoy the gifts in this box.

No matter your IV's, or missing brown locks.

In our eyes my darling, you are one of the best

An Angel so sweet being put to the test.

For Mommy and Daddy, our wishes for you,

Are to smile as she dances in these new tutus!

Merry Christmas to all, and a Happy New Year,

Have fun with your new Elf Party Dance Gear!

Most Sincerely,

Santa

Since we got this package, Charlotte has been dancing for us for hours each day in different outfits.  One happy happy girl makes a happy mommy and daddy!  I have posted a video on the facebook page, here is another one - I have many!!!!

I

Christmas and Maintenance Starts

I last posted on the 16th. The 17th was the two year anniversary of Stefan's diagnoses. We actually spent that day with a visit to Royal Columbia to visit my grandpa, kind of fitting that we were brought back there. I remember too well pacing the halls not knowing what was going to happen that night two years ago.

We had a lovely dinner that night to toast Stefan's good health.

Stefan has successfully managed with the kids at home while I've been back to work. Luckily they are all on the same nap schedule so he usually manages a little lay down in the afternoon. I think Charlotte is starting to outgrow her naps, but she is quite happy to read in her bed for nap time.

Back to work has actually been okay, I've dove right back into things and keep busy so the time flies by. 

Charlotte officially started maintenance on Christmas Eve. Again, she did great for dad. They were delayed a couple hours at the hospital and she was the last procedure of the day. But we all made it home in time to cook dinner! We did our best to prep everything ahead of time, and succeeded in making the day go by relatively stress free!

We had a lovely dinner Christmas Eve with all Stefan's family and my parents. Swedish style meant ham, red cabbage, deviled eggs, pickled herring, pickled salmon, aquavit, and my families addition of scalloped potatoes to the meal!  We had the traditional rice pudding for dessert along with my homemade rum raisin ice cream as it's a favorite of my mother-in-laws.  Charlotte didn't have an appetite due to the lumbar puncture chemo, but otherwise she did pretty good. Santa dropped some presents at the door and as we tried to get a peek at him through the window, he popped out from the side of the house and scared the living daylights out of Charlotte!  She recovered pretty quickly though! Was quite funny actually and a memory we won't forget!

Christmas Eve dinner with TooToo and Grandpa Gerald

Picture Perfect Christmas Morning

Christmas morning was just the four of us and was perfect. Not too chaotic, and the kids took there time opening presents, wanting to play with everything. I remember looking at my husband and he had such a sheer look of relaxation and joy on his face. Holding his cup of coffee and watching our happy kidlets. We enjoyed our slow morning and then had an early Christmas dinner at Stefan's sister's home.


Charlotte's appetite recovered for Christmas Day.  She had a couple clingy crying spells as a result of the new steroid, but not nearly as bad as anything we experienced with the dexamethasone.  I guess we can call her a Carlotta version 2.0.  Hopefully this is what will be routine going forward as it was for sure manageable!