Christmas time, more delays, and back to work

what we've been up to
Sorry I haven't posted in a while.  We have been enjoying time at home.  Last weekend, Stefan and I both got separate nights out to attend events.  I popped into work on Friday to drop off my computer to get updated for my upcoming return to work (more on that later) and then attended my work's Christmas party and a going away for a friend.  Stefan had his night out on Saturday.  Otherwise we have just been getting ready for Christmas - shopping, gingerbread houses, drives to look at lights - we are all very excited for Christmas!

Charlotte has been delayed again.  Her ANC was 0.4 on Friday.  That means she is still neutropenic.  Despite that, we received special permission to take Charlotte to my work's children's Christmas party on Saturday.  I really wanted for her to go as she hasn't been able to do any 'party' like events and it was a chance for her to see Santa.  So - despite heart attacks for both Stefan and I anytime anyone coughed, it was so worth it.  We dressed the kids up, Charlotte wore her dress and shoes from last Christmas, a sign of her small size.  Charlotte had a blast.  She had her face painted, did crafts, ate, watched a magic show, and of course, received a gift from Santa!  Nathan just loved running around!

Then Saturday evening, we attended a neighbors celebration of life.  We had grown close to this neighbor due to her inspirational fight against cancer.  Whenever we are out with Charlotte, people don't seem to associate her bald head with cancer.  But at this event, people KNEW what a bald head means.  The sympathetic looks, along with the reason for the event had me shedding extra tears. 

work
So....work.  Yep, I'm back to work this week.  It will be a gradual return, with just two half days this week, and three half days next week.  That unfortunately means I have to work Christmas eve, but at least only the morning.  I am resigned to going back to work.  I like my job, and I like the people I get to work with, that's not the hard part.  As much as it will be tough to leave my little family though, it will be okay. 

Stefan has his next meeting in mid-January where they will be talking about his back to work plans, so no ETA on his return yet.

to come
With Charlotte's delay, we had two options.  If Charlotte is a go, we can come in Friday (the 21st). Unfortunately, our appointment wouldn't be until the afternoon.  That would mean we could try to get Charlotte to eat at 7am, and then she would have to fast until 1:30/2pm.  Also, Charlotte would probably be at the peak of her steroids side effects on Christmas.  Our other option was to go in Christmas Eve. We would have an early appointment (we had our choice of time) and no raging emotions for Christmas.  Can you guess what we chose?  So Charlotte will get a lumbar puncture, chemo and steroids for Christmas.

Because I have to work on Christmas Eve, I was actually hesitant to choose that day for Charlotte's treatment .  Usually the first day of treatment comes with discussions with the Dr. regarding what to expect.  But after a chat with the nurse clinician, I found out I won't be missing anything.  We will find someone to watch Nathan and it will be daddy and daughter day at the hospital for Christmas Eve.  Granted, this is all dependent on Charlotte's counts, you never know, she could get delayed again.  I will be anxious to check on Charlotte's weight again, she has been really hit and miss with eating, and still gets sick a couple times a week.  We celebrate with a Swedish style Christmas Eve dinner, but the visit shouldn't hinder our preparations!

I will now leave you with a photo bomb - comes with not posting in a while!

Checking out various Christmas lights.

Getting her face painted for the first time - she did so good!

The final result - our little girl reindeer!  Adorable no?

Crafts!

Charlotte got a new crown and wand from Santa and then explored the halls!

The things we do to the people we love

In the face of a cancer diagnoses, there is a lot of anger.  Often, people will lash out at the ones we love the most.

Here is an excerpt from I'm with you now by M. Catherine Ray, "We are hardest on those we love most deeply.  We make more demands on them, trusting them not to abandon us, even if we aren't polite or kind." 

I was guilty of this both times.

When Stefan was diagnosed, I got angry with one of my best friends, due to the sole fact that she had come to the hospital when I told her not too.  Kinda silly.  But another good friend consoled her with the sage advice of "Taleen probably needs to be mad at someone right now.".  No truer words could be said.  My friend handled it like anyone in that situation should - with patience and compassion.  I'm so thankful she stood by me, didn't take it personally, and continued to be the amazing friend she is.

When Charlotte was diagnosed, I again lashed out at someone close to me.  Unfortunately, that relationship didn't hold up.  My advice to others who have a loved one who goes through something like this, is to allow compassion and patience.  If they lash out - I advise you to not take it personally (as best you can) and saying something like "I know you are hurting, I'm here for you when you are ready", and continue to tell them you are there for them.

I think the greatest lesson I learned when I worked with children is to not take bad behaviour personally.  When a toddler strikes out - our first thought is usually "is he hungry, tired, teething?".  If we deal with a grumpy cashier, peoples first thought tends to be "what a poopiepants" instead of thinking "they are probably tired, hungry, or had a fight with someone they love".

So, in the spirit of Christmas (or which ever holiday you celebrate), next time you run into a poopiepants, try to imagine what their custom shirt might say; "my husband has a brain tumour and my kid has cancer", or "how will I pay my credit card this month", or "my mother is ill", "or "I'm hungover".  Use your imagination and remember some kindness and compassion. 

Love and compassion are necessities, not luxuries.  Without them humanity cannot survive.
Dalai Lama

a little longer in the bubble

We were into the clinic on Friday for Charlotte's last chemo of this phase.  Her neutrophils were as low as they can go.  So it's not very likely they will be high enough for us to start maintenance this week.  She gets blood checked on Friday, and I'm sure it will be at least another week delay. 

Till then, we are staying home with walks out and keeping an eye out for fevers!

Charlotte is super excited about Christmas.  Everything is Christmas.  When we went to Tim Hortons, her regular ole' bagel order was now a 'Christmas bagel' along with mommy's 'Christmas tea'.  She has her advent calendar, and we made a gingerbread house today! 

I sometimes try to do visualization to get me to a happy place and try to help me sleep.  I try to picture my happy healthy family in 10 or 15 years from now.  I have a really hard time picturing Charlotte with hair in that future.  She is usually a feisty little spitfire with a buzz cut or pixie hair cut.  She can certainly pull it off!

Birthday Love

I celebrated my birthday yesterday.  I love birthdays!  What else can you ask for besides a day filled with warm wishes, extra hugs, kisses and spoiling from your loved ones, and your favorite mom-cooked meal!

After a sleep in, I woke up to fresh coffee with eggnog, and birthday greetings from my adorable family!  Nathan was wearing an over sized shirt that went past his knees.  It took me about half an hour to read it since he wouldn't stand still!  It was part of Stefan's present to me, along with my own t-shirt!

Here are the photo's:

After opening my presents, we went for a walk to Newport village for coffee.  Charlotte actually walked quite a ways by herself, which is a huge milestone! 

Another cute pic:

In the afternoon, Stefan had a doctor's appointment with his endocrinologist.  I listened in on speaker phone as it was during the kids nap times.  It was all good news!  Stefan's testosterone levels (along with all his other hormone levels) are excellent!  I said, I'm sure he's got enough testosterone to spare!  So, overall, no concerns about his pituitary function, and they will check again in a year!

Then we were off to dinner at my moms (or Tootoo's as the kids call her!) for my favorite meal, spaghetti with meatballs, caesar salad, garlic toast and ice cream cake!  Yum!

And another pic: 

A great day!

The last long day!

Even though it's been a long week, we are giddy with the excitement that we will be in the maintenance phase in a couple of weeks!

A summary of our week
On Monday we went in for Charlotte's chemo and bloodwork.  Even though her platelets were on the low side, no transfusion was needed, we just needed to be weary of a bleeding nose.

Sure enough, Thursday morning Charlotte's nose started bleeding and didn't want to stop.  I phoned the clinic and they said to come in.  They started her platelet transfusion right away.  They also did bloodwork, and it was pretty likely she would need red blood cells on Friday.

Friday turned into a rather long day with the additional blood transfusion (that makes 16 total transfusions now, 7 platelet and 9 red blood cells).  Because both the chemo she was getting and blood transfusions can cause allergic reactions, they had to space them apart.  We were into clinic at 10, and out by 5.  Luckily we had a couple visitors drop by to play with us, my Mom and a friend from high school, Elaine.

Friday was our last scheduled long day!  So that night I was feeling pretty good.  I say scheduled, as we will probably have hospital overnight admits at some point over the next two years (any time Charlotte gets a fever), but it was the last planned long day of treatment!  Her lumbar puncture days during maintenance should only be half a day.

We are back in Friday for the last day of treatment in this phase.

What exactly does maintenance mean?
I imagine that is a question on a lot of your minds.  Well, we will hopefully start December 7th, but it will be dependent on Charlotte's counts, she could get delayed a week.

For two years, we will be into the clinic every 28 days for chemo (vincristine).  Every third cycle (a cycle being each 28 days) she will get a lumbar puncture (IT methotrexate).  For the first 5 days of each cycle she will get prednisone.  I've heard the prednisone can be quite mood altering similar to dexamethasone.  She will get mercaptopurine (what we call 6MP) every night.  She also gets an oral dose of methotrexate 3 times a month.  (she will also still take her septra (pneumonia fighting antibiotic) every Sat/Sun/Mon)

The biggest thing about maintenance is that Charlotte will have an immune system!  We will be out of the bubble!  She can resume all normal activities.  The Dr.s did say we might want to avoid the swimming pool on a Saturday afternoon.  But you get the drift!  We will also be very cautious avoiding exposure to chicken pox and other contagious diseases.  Any fever still means we go to emergency.

So, Christmas will be pretty special this year (yet again I suppose, as the last two were pretty special too for other apparent reasons!).  I can't wait to be able to go to some holiday festivities with my little family!

So, even though Charlotte is still not quite herself, needing extra cuddles, and still not eating really well, we can't help feeling a bit joyful, seeing the light at the end of this tunnel.

Stefan update
Because I get asked all the time - Stefan is doing pretty good.  He is still seeing his occupational therapist twice a week, and they are making plans for him to start his gradual return to work. I will keep you posted once a plan is in place!

I wasn't very good with pictures this week - so I'll post this portrait of my beautiful little family made by Elaine:

War wounds

Charlotte has been doing pretty well.  She didn't have much of an appetite over the week.  But she has been making up for it here and there.  Last night she did really well with some roasted chicken (with 'jam', aka cranberry sauce) and mashed potatoes and gravy.  I've also been trying my best to get pediasure into her when I can.  She maintained her weight over the week, so I take that as a good sign.

She was also throwing up when she would wake up in the morning.  We will keep up with her two doses of odansatron (anti nausea med) for the week I think, as that seems to help.  We haven't had any puke episodes the last two mornings.

She got a blood transfusion when we were in Friday.  That makes number 14.  6 Platelet transfusions so far, and 8 red blood cells.  Thank you to everyone out there who has ever donated blood in their lifetime!  She also got a lumbar puncture, which was number 10.  I believe she will just get one every 3 months in maintenance, so only 8 more to go!

This is the last weekend of the Cytarabine, or ARAC.  Which is the one that we have to drive in for Saturday/Sunday/Monday.  This is the chemo drug that really seems to effect Charlotte's appetite.  I think overall though, she has fared better then most kids with eating and chemo side effects, so we aren't complaining, just have to get through this week.

When we are in clinic for chemo, she gets 'accessed', which is what they call it when they put the IV into her port.  Then the lines can be used to administer fluids, chemo, or to draw blood.  When we are doing the 4 days of ARAC, she stays accessed, so she comes home with her IV in, or 'butterfly' as we call it.  Amazingly, it doesn't seem to bother her.  Here are some pictures.

close up - you can see why we call it the butterfly.

her lumbar puncture bandage

Just like daddy

So we saw Charlotte's neurologist on Monday.  I explained to Charlotte how we were seeing a different doctor, one who looks at her brain - just like daddy's.  It went okay.  We met with the resident first.  Started off with history, lots of questions and Charlotte showing off her skills (ie. knowing her shapes, counting into the teens, 'spelling'.  She will spell out a word, and for each letter she will tell you what sound it makes and words that start with the letter - my smartie pants).  At this point, the resident made the comment "so, why are you here".  Which were sort of my sentiments too.  And then he saw her run.  Or lack of running if we want to be entirely accurate.  But please don't tell Charlotte that - as she thinks she is 'superfast'!  To be honest, Nathan is faster then Charlotte.  So, yes, Charlotte has some gross motor delays.  The neurologist came in and checked Charlotte out.  After a few tangents, the point that she had been seeing physio last year, and they closed her file because she was progressing so well, it was determined that these delays are likely due to the effects of her chemo and the fact that she hasn't been well the last 9 months and hasn't had the opportunity to work on her gross motor skills.

For example, I'll list you the side effects of Vincristine (which she has already received 15 times, and will get 26 more):

• Constipation
• Pain or cramping in the abdomen
• Jaw pain, problems chewing
• Pain while urinating
• Blurred vision
• Feeling dizzy or lightheaded
• Trouble Walking
• Hands or feet feel numb, weak or tingle
• Muscle cramps or muscle weakness
• Hair loss
• Low levels of sodium in the blood
• Seizures
• Weak or hoarse voice (rare)
• Problems with swallowing (rare)

Isn't chemo fun? (note, this is just the effects of ONE of the 12 different types of chemo she has/will get)

So, it's really hard to tell where Charlotte would be with her gross motor skills if she hadn't have got cancer.  Now, the MRI is really just a diagnostic tool, they might see something that might explain why she has a delay (or they might not).  But, it's not going to provide a 'fix it strategy'.  So, with that being said, the neurologist said they would just leave it up to our oncologist.

Well - that leads us to today.  Charlotte's counts were good enough to start her second phase today.  We saw Charlotte's oncologist - and he want's to go ahead with an MRI.  It will occur when this phase is done, probably before Christmas.  Fine - I've resigned to it.  I also asked if we should be starting physio again, and they will likely get a physiotherapist down to the clinic to see her.

Charlotte did awesome today.  She had to fast again for her lumbar puncture.  We were there at 8:15 so they could start hydrating her for her Cyclophospamide.  She didn't get her lumbar puncture done until 10:30 though.  After a 10 minute cry for food, she was content to cuddle, and I was pretty happy to have Charlotte cuddles for the 90+ minutes!  Then we had a busy day of some serious playing, some treehouse and snacks (or picnic as Charlotte likes to call it).  We packed up at 5 to head home.

So, we have another long weekend of driving to Children's hospital every day for chemo.   rough summary of our month:

• Saturday/Sunday/Monday (10th/11th/12th) - quick trips to Children's for chemo (ARAC)
• Friday (16th) - in for lumbar puncture (which means fasting till 10:30) and ARAC
• Saturday/Sunday/Monday (17th/18/19th) - quick trips to Children's for chemo (ARAC)
• Friday (23rd) - longer day for Vincristine and PEG-asparaginase
• Friday (30th) - Vincristine
• oral medication at home (6TG) until the 22nd, and possible extra visits for blood transfusions

I apologize for the longer post which is full of details - these are more for my records and the couple people who want them!

Charlotte continues to amaze me!  She cracks me up all the time these days, and I'm loving seeing the magic of everything through her eyes.  She is non-stop chattering, and her little voice can only be described as 'happy'.  I'll leave you with a couple pics of my little superhero in her newest 'shark' hat and her cape!

Surprise, Surprise

We were supposed to start the second half of this phase on Friday, but, surprise, surprise, we are delayed again.  Charlotte's neutrophils were only 0.2.  As a result, we are scheduled for bloodwork again Thursday with a possible start Friday. 

To avoid becoming bored, we have a followup appointment Tuesday with the neurologist for Charlotte.  I'm curious what they will say, as I think Charlotte's development (especially her speech) has taken off.  We will keep you posted.

Charlotte loved Halloween!  She was a cancer zapping fairy princess, and Nathan was an adorable duck!  She made it to 3 houses and then wanted to go home.  She was pretty excited about the night though!

She has also lost all her hair again, it happened pretty fast.  Once it started to fall out, it would just come out in clumps.  Kissing her head was like kissing a cat. 

Cancer Zapping Fairy Princess

Nathan enjoying the fall leaves - he was non-stop giggles!

Charlotte sporting her newest hair style!

Goodbye Carlotta

It's day 4 since finishing the steroids, and Carlotta has made her exit.  Charlotte won't be getting anymore Dexamethasone.  She will get Prednisone during maintenance, but I don't think that will be quite so mood altering.  

With saying goodbye to Carlotta, a couple things happened, almost like magic:

1. A more manageable amount of tv time.  The TV was on almost constantly with Carlotta around.  I guess this also is blamed on her not having energy to do anything BUT sit on the couch watching the telly.  I haven't disclosed what exactly 'manageable' means, as I'm sure we are still watching more then the recommended daily allotment for pre-schoolers, but it's about a tenth of what it was a week ago - baby steps
2. Meals at the table.  Lunch and dinner were had at the table, with no bribing, coercing or timers needed!  Woot woot.  She also hasn't been demanding a different meal every 10 minutes - I can put away my short-order cook hat!
3. Sweet Charlotte.  I have my girl back.  My energetic, playful, silly girl.  nuff said.

Our pumpkins!

PS. we got our wish for poop - all has been good on that front (or should I say back)!

Carlotta

A hospital visit

We had a stay in the hospital this week.  Charlotte woke up early Wednesday morning (4am).  At first she asked for crackers, which I got her.  Then she was upset and wanted cuddles.  This escalated into crying, and eventually "my tummy, my tummy".  At first I thought it was nausea and gave her the anti-nausea medicine, but this didn't seem to help.  I gave her a heating pad for her tummy.  At 5am, I had Stefan call the oncologist on call.  Feeling her tummy, it felt on the firmer side.  They wanted us to bring her in.  Murphy's law - as soon as we got off the phone with the oncologist, Charlotte stopped crying.  On the trip to the ER, she was non-stop talking.  ("oooh, it's dark out mommy", "it's Halloween", etc. etc.). 

The ER was dead, and as an oncology patient, we were given a room right away (to keep her away from germs).  She had an x-ray done, and then we went to the oncology clinic once they were open at 8am and spent the day there. 

Bottom line was she had severe constipation.  (Is Charlotte going to hate me in 10 years for this being on the internet?).  The chemo she has had can cause constipation.  There had been a number of kids in with the same problem.  The doctor also said there are some virus's that can cause the bowel system to slow down.  She was in a lot of pain and received a couple doses of morphine.

They kept us admitted in the hospital for a few reasons:

1. The steroids that she is on can mask a fever among other things
2. She is in the most intense part of her treatment
3. There have been 'incidences' in the past when kids have gone home in this condition (didn't expand so as not to worry me)
4. Since the morphine makes constipation worse, it's hard to manage at home
5. The x-ray had no red flags, they were being cautious

I was fine with staying at the hospital and making sure Charlotte was taken care of.  The hospital was so busy, we actually had to share a room with another oncology patient.  This is pretty rare, but supposedly does happen a couple times a year.  So, Stefan had a very rough night the first night as the other child didn't sleep.  The second night Charlotte finally had her bowel movement before bed, and everyone slept much better.  Another movement Friday morning - and we got our exit ticket!

She unfortunately hasn't had a movement since we've been home, so I'll be doubling up her laxative tomorrow and will probably pick up another concoction too.  My poor girl!  She has been in pretty good spirits though, and I loved having her help me make muffins today!

It was kind of good timing for us as we had my brother, sister-in-law and sister in for a visit so we had extra help at home with Nathan and some company at the hospital.  My maid of honour from our wedding was also in town and I got a good visit with her too! 

Tonight we are feeling a bit spoiled.  My parents came and helped out today and I had a fantastic nap while Stefan went and watched some rugby!  Then my friend Christine of Almondine brought us a fantastic dinner and dessert!  So - I'm sitting down with a very full belly and a glass of wine! 

Here's hoping tomorrow brings us some poo!

Thank you Noriko

A while back, when we were staying at the hospital, we had the opportunity to have some professional photo's taken of Charlotte.

We got to meet the fabulous Noriko of Life in Images (www.lifeinimages.ca), who volunteers her time at Childrens.  She is also a teacher for Stefan's school district, and also has her own family cancer story.  Charlotte and I had a lot of fun with our mini photo shoot at the hospital so when Noriko followed up with us and offered to take some family photos, we of course jumped at the chance!  Nathan was a cranky pants that day, but that's okay, as he is usually the easy one to photograph and I have lots of smiling Nathan shots. 

It was very hard to choose my favorites - but here are a couple!

Giving her 'hip hop' move with some 'tude, classic Charlotte!

happy girl

at the hospital - playing hide and seek with mommy!

I'm back

First off - just wanted to apologize for the longer than usual delay since my last post.  I've just been in a bit of a funk, and priority was to try to take care of me.  I'm doing that, things will be okay!  It's amazing how stress takes such a physical toll on the body.  I had a checklist of physical signs of depression - and Stefan and I went through it together and I could check off 90% of the items.  I was surprised Stefan was so aware of my symptoms, as he said "I do live with you!".

Just wanted to say how blessed I am to have such amazing friends and family.  They recognized when a storm was brewing and offered coffee dates or chats. I know people wish they could do more for us, but I can honestly say there isn't much anyone can do.  Our sick little girl is our burden, and I wish I could pass on some of the pain and tears, but we can't.  We can read all the comments of support though, we can get together with a friend to vent, and we can accept all the prayers and positive wishes - for that we thank you!

Charlotte is doing pretty good, aside from the extra helpings of tantrums and Carlotta outbursts.  We were in today for her chemo and a possible blood transfusion, but she didn't end up needing any blood - so that's good.  Her neutrophils are low though, so while we have been cautious all month, we are officially in the bubble.  We are scheduled to be back in next Friday for a possible blood transfusion.

Tomorrow we are going to do the Light the Night walk in Stanley Park.  Not too late to join us if anyone wants to!

Birthday Turkey

It was our little boys birthday this weekend, on Sunday.  Can you believe he is one already?  It seems like yesterday we welcomed him into our family!  We had a pretty low-key birthday for him, and celebrated on Monday with Turkey dinner and cake with both sets of grandparents, Aunty Rebecca and his little cousin Abbey. 

While I wish the day could have been all about him, that was quite difficult with Carlotta out in full force (Carlotta being the name of Charlotte's steroid induced alter-ego).  Carlotta will be whimpering with full on tears one minute, screaming for something to eat the next minute, and happy talking-a-mile-a-minute the next minute.  She also requires 'mama' at her side at all times.  This made for some difficulty in making a turkey dinner, thanks to family we were able to get one on the table!

Nathan, thank you for being such an easy going happy baby!  You have been very patient my boy in quite a chaotic year!   I love how much you LOVE splashing in water or eating dirt, how you go all 'Jerry Lee Lewis' on the piano, and how you happy dance when you eat!  I love your endless energy.  When I'm tired of bouncing you, I pass you off to your father and tell him "it's your turn, it's your fault he's like this, he's your mini-me!"  I love how I can pick up your sleeping body after a long day of not being with you, and you cuddle up to me!  Hugs and kisses my boy!

On his actual birthday - Spaghetti face Nathan!

Delayed Intensification

We started Delayed Intensification today, the last phase of active treatment before Charlotte is in Maintenance.  This is supposed to be the hardest phase of Charlotte's treatment.  We have basically written off October and November.

The first month is quite different then the second.  Right now we are scheduled to be in twice next week (Tuesday and Friday), and then the following Friday (the 19th).  This month she gets Vincristine, Doxorubicin, PEG-asparaginase (3 chemo drugs given through IV, all she has had before), IT Methotrexate (given through lumbar puncture) and Dexamethasone (the steroid which gives us Carlotta - Charlotte's hulk like alter-ego).

Next month she will again get Vincristine, PEG-asparaginase and IT Methotrexate.  In addition, she will get Cytarabine (which she has had before) and two new chemo drugs, Cyclophosphamide (given by IV - and by reading things, doesn't sound very pleasant) and Thioguanine (an oral drug given at home).  

She will lose her hair again this phase, will likely require some blood transfusions, and will have the usual symptoms, nausea being the biggest. 

She handled this morning's lumbar puncture really well - my little trooper.  She also had the Vincristine and Doxorubicin.  We were only at the hospital for a couple hours.  We had a quick stop at my Mom's for lunch and a little playtime, and were home for naps.  She awoke from her nap screaming.  I couldn't calm her or find out what was bothering her.  I gave her some gravol (it was too early for her next dose of her anti-nausea medicine) and that seemed to do the trick for her.  She is now curled up in front of the telly.  Welcome to Delayed Intensification.

I am tired.  sad.  frustrated.  Yesterday wasn't a good day.  I've applied for sick leave from work, and yesterday had a call with the disability management person.  She was not very nice.  I don't think I have ever been treated with such obvious contempt.  I'm still upset over it.  I'm doing my best to put on my 'mom face'.  I feel like a weathered away statue.  I know I'm strong, I've been through a lot.  But I feel like the storm just keeps getting stronger and I can no longer recognize myself.  Like one hard hit will shatter me down the middle. 

"Give sorrow words; the grief that does not speak whispers the oe'r fraught heart, and bids it break." - Shakespeare

It's days like this I just lean on Stefan a little more.  It's likely I'm just due for a couple good crys.   Sorry- remember - cancer blog - you get it all.

*Follow-up: I wrote the above a few hours ago.  Since then, Charlotte had her anti-nausea medicine and perked back up, and was her silly crazy self.  She was being so silly, I asked her if she was on drugs, she said 'yes'.  We went for a family walk which always helps.  I'm now sitting down with my hubby and a blizzard about to watch glee, so feeling a bit better.

I hope everyone has a great thanksgiving - hug your loved ones, and enjoy your turkey dinner!  I will!

All Good

I'm sorry I did not update earlier on Stefan's MRI result.  As you can imagine, I was on pins and needles up to the MRI (which was on the 26th).  Scanxiety is the jargon used to describe this feeling - quite common in the cancer crowd.  I was the emotional one on Scan day, Stefan is cool as a cucumber.  Go figure.

We will typically make a bit of an afternoon of it.  Stefan's MRI was at 11, I met him with Nathan just after at Granville island for lunch (Charlotte was with my Mom).  Then we headed over to the cancer center for our 2pm appointment.  Thankfully we didn't have to wait for long, and the first words out of the Doctors mouth were the ones I wanted to hear - no change!  Whew. 

Oh, and speaking of MRI's, we got the call this week from Radiology at Children's to book an MRI for Charlotte.  Doesn't that feel like eons ago that Charlotte was put on the waiting list for an MRI.  I did a quick call back to let them know that Charlotte is now an oncology patient and they will touch base with our oncologist.  I believe the MRI is on hold for now.

So, after Stefan's MRI, we went home to celebrate.  I finally started to feel somewhat normal after dinner and we went for a walk with the kids.  Charlotte treated us to a couple firsts - first time for her on a 'big' swing, and she also went up a couple stairs by herself! 

This has been the typical joys for us the past couple weeks.  Charlotte has been doing fantastic.  And since she's been feeling well - her development picks back up and she catches up for a couple missed months!  So, we have been really enjoying our active and chatty little girl!  Nathan is bringing us lots of delights as well - he's walking now (albeit wobbly), loves to eat, and has shown us he can have a bit of a temper!  He is quite the personality, and I can't believe he will be turning 1 in a week.

We were given another gift today.  We were selected by the Gaby Davis Foundation as one of their families.  It was so nice to be picked, and to meet Tanya Davis - a remarkable woman.  I have been reading Gaby Davis's story all week, resulting in a lot of tears.  We were really touched by her story and the amazing work that this foundation has been doing.  I really hope that I can give back and hopefully help out with this charity when things get less hectic for us.  It was a great way to end September - Childhood Cancer Awareness Month.

Part of their gift was a bike for Charlotte and a wagon for the kids.  We went for a walk tonight and Charlotte was SO excited!  The whole trip (which we had intended to go out for a half hour, but Charlotte insisted on longer), Charlotte was giggling and saying "I love my bike" the whole time!  Here is a snippet:

And a picture of the whole crew:

So - BIG thanks to the Gaby Davis Foundation for their gifts and the wonderful work that they do! 

Childhood Cancer Awareness Month

Did you know that September is Childhood Cancer awareness month, it's also Leukemia Awareness month.

In honour of this month - I'd like to share a video, some facts, and a poem.

I found this video through a facebook contact, a fellow cancer mom, I think it's worth watching and is an accurate portrait of our life.

The following facts came from the Childhood Cancer Website:

• There are about 10,000 children living with cancer in Canada today.
• Each year, about 1500 cases are diagnosed.
• Because of significant advances in therapy, 78% of these children will survive 5 years or more, an increase of almost 46% since the early 1960's.
• More than 70 percent of children diagnosed with cancer become long-term survivors and the majority of them are considered cured.  However, long-term effects of surviving the treatments for childhood cancer can affect these children's futures.
• In the early 1950's, less than 10 percent of childhood cancer patients could be cured.
• In Canada, childhood cancer remains responsible for more deaths from one year through adolescence than any other disease; more deaths than asthma, diabetes, cystic fibrosis and AIDS combined.
• Childhood cancers have close to a 75% cure rate, with leukemia leading the success charge with close to 90% overall cure rate.

Following story copied from PLGA Foundation:

I Hope

By Carol Baan

I hope you never have to hear the words “Your child has cancer”.
I hope you never have to hear “The prognosis is not good”.
I hope you never have to watch your child prepare to undergo chemo, have a “port” surgically implanted in their chest, be connected to an IV pole, look at you with fear in their eyes and say, “Don’t worry Mom, it’s going to be okay.”
I hope you never have to hold your child while they vomit green bile.
I hope you never have to feed them ice chips for lunch.
I hope you never have to watch the “cure” you pray for slowly take away your child’s identity, as they, lose their hair, become skeletal, develop severe acne, become barely able to walk or move, and look at you with hope in their eyes and say, “It’s going to be okay Mom.”
I hope you never have to stay in the hospital for weeks at a time, where there is no privacy, sleeping on a slab, your face to the wall, where you cry in muffled silence.
I hope you never have to see a mother, alone, huddled in a dark hospital corridor crying quietly, after just being told “there’s nothing more we can do”.
I hope you never have to watch a family wandering aimlessly, minutes after their child’s body has been removed.
I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope, and fear overwhelm you.
I hope you never have to see your child’s head bolted to a table while they receive radiation.
I hope you never know what it is like to take you child home, (grateful but so afraid) in a wheelchair because the chemo has damaged their muscles, 35 pounds lighter, pale, bald, and scarred, And they look at you with faith in their eyes and say, “It’s going to be okay Mom.”
I hope you never have to face the few friends that have stuck by you and hear them say, “Thank God it’s all over” because you know it will never be over.
Your life becomes a whirl of doctors, blood tests, and MRI’s, and you try to get your life back to normal while living in mind-numbing fear that any one of these tests could result in hearing the dreaded words “The cancer has returned”.
And your friends become even fewer.
I hope you never have to experience any of these things.  Because only then will you understand.

Carol Baan
March 12, 2003 ©

Terry Fox Run

We made it to the Terry Fox Run Sunday as a family.  Stefan had intended to go with Nathan, but we weren't sure a) if we would be out of the hospital and b) if Charlotte would be up for it.  But, as I said in my previous post, Charlotte is a little superstar.  We just did the 2km at the Port Moody run, and Charlotte managed to walk just over half of it herself!  I was pretty proud of my "just got out of the hospital after chemo" little girl!

While it would have been nice to be at the hometown run and meet up with a number of people we knew would be there, I think it was a smarter idea to stick with the smaller Port Moody run, less germs and less busy so as not to overwhelm Charlotte.  And - we would have missed this photo op:

The Port Moody Cheerleaders wanted to pose with SuperChuck!

"I'm coming I'm coming"

Mr. Smiley pants

Bestest Birthday Ever

We were home for Stefan's birthday!  While that in itself would have made it the bestest birthday ever, add a rugby game, steak dinner, curious george theme decor, and two happy kidlets, and it was one of the best days this household has seen in awhile!  (Yes I realize bestest isn't a word - I think it should be though!)

The hospital stay overall went pretty well.  Thanks to Mike and Pete for bringing by dinners, and the Bruce family for the gift drop off for Charlotte.  Also to my parents, Rebecca and Erin for helping out with Nathan!

Wednesday, while Charlotte's chemo was running, she was very low energy and looking a little green.  I braced myself for another long week.  She doesn't want to 'miss out' on anything though, so we still made a number of trips to the playroom.  We ended up curling up on the play mat and Charlotte dozed off for a little nap.

Thursday Charlotte perked right up and things were looking pretty good.  Friday we were moved off the oncology ward as they were so full, and since Charlotte was just post-hydrating, we were moved to another ward.  We took this as a good sign, and it probably meant we were the healthiest there.  It was not unlike the time Stefan got the coveted 'bed in the hall' at Royal Columbian.

Stefan's bed in the hall - 5 days after his first surgery - December 22, 2010.

We met a really lovely resident Dr. who had had leukemia when she was 7.  It was pretty reassuring to meet this survivor and dream of our little girl all grown up and healthy!  She had some really nice things to say too; "it's harder on the parents then the child", and "you have a really great family - I can tell you are really supportive of each other.".

And that leads us to Saturday.  We knew first thing in the morning that we would be heading home based on her methotrexate levels.  But we didn't actually leave the hospital till about 1pm.  That gave Charlotte and I time to make a couple stops on the way home so we could hold an impromptu birthday party for daddy.

And party we did.  We had Stefan's sister and our niece over along with my parents.  BBQ'd steak up for Stefan, and Charlotte had picked Curious George for his theme, so a couple decorations and hats were in order.  Charlotte had lots of energy and was super silly and fun!  We are all still on the high of the happiness that filled our home!  Charlotte has some oral medication while at home, but we aren't back to the hospital until October 5th - looking forward to the little break!

Today we did the Terry Fox Run - I'll post some pics from that in another post.  Meanwhile....

Nathan gets to enjoy the playroom too!

Charlotte's playroom nap.

meat = happy Stefan

The Best Things about BC Children's Hospital

We are back in the hospital.  The extra little break for Charlotte did absolute wonders.  I have had my happy girl back for the last few days and it's been so nice to have my silly, happy little hero laughing around the house!  She has also been eating non-stop and managed to pack on 1.7 pounds in 5 days!  Woot woot!  All her blood counts were up, with her neutrophils at a very impressive (and record for us) 1.8.  Hopefully this all points to a quick hospital stay for us.  Our goal is to be home for Stefan's birthday on Saturday - wish us luck!

Tomorrow Stefan has to get blood work done.  For each of his MRI's, they inject him with a special dye, and he has now had a few.  The blood work is to check how his liver and kidney's are holding up after all this dye.  His MRI and our follow up with his oncologist is on the 26th.

In anticipation for our hospital stay, I came up with our list of the 8 best things about BC Children's hospital:

1. The toys - this is no doubt Charlotte's favorite thing about Children's hospital.  They have a pretty killer play room in the clinic, and a not too shabby playroom on the third floor!  Pretty much any toy you can ask for!  The first thing Charlotte will say when we tell her we are going to the hospital is "Play?".

Charlotte in the playroom.

2. The coin machine - they have this set of machines not unlike the ones you see at your local grocery store where you insert a quarter or loonie to get a toy.  Whenever the kids get a 'poke', which can be a lumbar puncture or getting their port accessed, they get a coin.  For a while Charlotte would always choose a ninja, and garnered quite the collection of ninjas.  Her latest favorite was stick-on earrings, and today she picked a little dog.

Charlotte's ninja army

3. You can wear comfy clothes - no doubt my favorite is the totally accepted attire of yoga pants.  In fact, you may even be mistaken for someone important if you show up in your pj's.

4. The top people mingle with the rest of us - one day we were in the clinic playroom when we noticed a guy walking around.  He obviously worked there as he had the hospital id around his neck.  There are often staff around though whom I don't really know their role; spiritual adviser, social worker, media officer, you name it.  The guy commented on how cute Charlotte was and was smiling at her - I couldn't blame him.  After he had left, one of the nurses explained to me how he was the head of BC Children's hospital, and that he likes to spend time in the clinic getting to know the staff and patients.  That is pretty awesome in my books.

5. The Child Life Specialists - These amazing people are there to help children cope with being ill.  As far as Charlotte is concerned though - they are there to play.  They rock, let's just leave it at that.

6. The Volunteers - There are some pretty amazing volunteers at Children's, from Red Cross volunteers who have brought me many a tea or coffee on hospital days, to the Child Life volunteers who have played with Charlotte while I try to grab lunch or run to the pharmacy.

I've seen and met angels wearing the disguise of ordinary people living ordinary lives.  ~Tracy Chapman 

7. The staff - I realize I have used the word amazing in the last two bullets, but I have to use it again - third time is the charm right?  The Doctors and Nurses are.....yep, you said it - amazing (perhaps someone will want to get me a thesaurus for Christmas)!  They are thoughtful, respectful and knowledgeable.  On a couple occasions, they have even taken good care of Stefan and I too, like Tylenol for my migraine today or the day Stefan passed out in the clinic.  We are pretty lucky to have such a fantastic, compassionate and talented set of people at our hospital!

8. They know kids - It makes a huge difference having a facility entirely catered to kids.  The staff knows what's needed, like if a child needs an extra minute to calm down before getting some medicine or if she hasn't slept all night, and is finally napping, they hold off another half hour before checking her temperature and blood pressure.  The child themed decor, furniture, and readily available tv's with kids shows is pretty good too!

still home, but climbing up

Well, we are still home and treatment has been delayed once again.  Just when I think we can predict the next step, there is always a change in plans.

If you read the last post, I had kinda hit my breaking point on Sunday.  Things started to slowly get better the rest of the week though.  My mood has a direct correlation to Charlotte's mood, and when my happy girl started making her appearance, I cheered up.

The blood in her diaper continued to Tuesday and I ended up calling the oncologist again.  It wasn't blood accompanied with a bowel movement, but it was a separate discharge with blood that would come out separate from a bowel movement.  Charlotte was in obvious pain every time she would have a bowel movement or this discharge.  It was a rough couple days watching her go through that and not being able to do anything for her.  Talking to the Dr.s when we were in on Thursday they aren't sure what the cause could have been.

Charlotte slowly got back to her normal self this week, each day getting a bit better.  It took her about 2.5 weeks to recoup from this last dose of methotrexate.  This has me on edge in anticipation of her next dose.

She was supposed to get her last dose on Thursday (I had previously said Wednesday, but we ended up getting an extra day off so we could have some family time with our favorite travel family).  And since her blood levels were all okay on Friday when I had taken her in, we really weren't expecting any interruptions.  So, we were very surprised when we found out her neutrophils weren't high enough to start treatment.  They had been 1.46 on Friday, which is the highest they have been since she was diagnosed, and were 0.40 on Thursday.  They said that's pretty normal, and I guess it might explain the pooping issue.  I'm pretty thankful for the extra break, as I just got my happy girl back, and would like to enjoy that for a couple days!  We are back in for blood work Monday for a possible start Tuesday.

We had Michelle, Ben and their adorable kiddies here for a couple nights.  They helped brighten up things around here!  We don't let too many people into the bubble, but they are like family!  Charlotte had tons of fun with Nick, and Nathan loved flirting with little Emmie!  Nick has a lot of empathy for a 3 year old and was really great (read: patient) with Charlotte.  Michelle and Nick even joined us at the hospital and got to check out the cool playroom and see how brave Charlotte is.  I can't tell you how nice it was to hear Charlotte's laughs throughout the house as she was finally feeling better and had a couple of her favorite playmates here!

A couple pics....

Enjoying a picnic at Buntzen!

For those who wonder why there is often a soother in Nathan's mouth - we can call it a plug!

Nathan with his girl - "hey, I'm having a moment here"

Charlotte and Nick enjoying some quiet time

Success - photo with everyone looking!

the trifecta

oh how I wish I was about to talk about horse racing....

no such luck.  We had the super special trifecta today, a puke in the car, diaper explosions (poop for Nathan in the crib, and pee for Charlotte), and ended the day with some blood in Charlotte's diaper.  A call to the oncologist on call and it's likely just a small tear on her bum, nothing to worry too much about, but if we do get worried, call back and they will do a blood test to check her platelets.

What, me worry?  I think I'm getting an ulcer.  My fear of getting sick has made me a hypochondriac.

Charlotte has been out of sorts all week.  Friday I brought her into Children's hospital as I was SURE she needed a blood transfusion based on her low energy levels and the fact she could hardly hold her head up.  Nope, I was wrong, her levels were fine.  Of course she perked up as soon as she saw the playroom.  Maybe the real problem is she is just bored to tears of being home and playing with mom and dad.  I don't blame her.

Nathan seems to have developed an allergy.  We think it's a food allergy, so just trying to weed out the likely culprits.  It's a rash on his back.  Poor little guy.

It's been very difficult watching this disease take a hold of my little girl.  She has been irritable, low energy, and, the only word to describe it - is sad.  Every day I think, 'tomorrow she'll be a bit better'.

Needless to say, It's been a looooong week.  At the end of each day Stefan and I just give each the look of "whew, we made it".  I tell him, 'at least if we have to do crazy, I'm glad it's with you'. 

We looked at the calendar, if everything went according to plan with no more delays, we would be done by mid November.....we are pretty sure we are going to get some delays though.

I don't know how we are going to do another 3-4 months of this.  Hanging on.

I know God will not give me anything I can't handle.  I just wish that He didn't trust me so much.  ~Mother Teresa

delayed

Charlotte threw up this morning, and for the first time during her course of treatment I felt like she wasn't 'ready' to go in tomorrow.  Well, my prayers were answered as her blood levels are not high enough for her to get treatment tomorrow.  Her neutrophils (the immune fighting cells) are 'okay' at 0.80, but her platelets (for blood clotting) were only 0.60 and need to be at 0.75 to start.

While I'm very much looking forward to getting this last weekend over with and saying adios to High Dose Methotrexate - I'm thankful for the few extra days for her to recoup a bit more.  Hopefully her neutrophils will climb a bit higher - more neutrophils will help fend off those mouth sores!

While it throws a couple wrenches in our plans, everything should still work out just fine.  We have learned to 'go with the flow'.  My bestie Michelle and her wonderful family are coming to visit next week, and while we may not get as much family visiting, we will get some extra help and get our visits in at the hospital!

We will be back in for bloodwork on Tuesday and are tentatively scheduled to start Wednesday.  Hope everyone has a great long weekend before it's back to school time!

We are free and out of the bubble with no plans - hint hint if anyone wants to invite us to something kid friendly!

Oh - and I just wanted to say thanks to Jen and Dana for nominating me for the Walmart Mom of the Year contest.  I didn't win (some very impressive finalists!), but I really appreciated the kind words and effort that went into the nomination.  If you would like to see it - try this link: mom of the year.

Our other family

We are recovered from our long week.  We really enjoyed our turkey dinner (Stefan BBQ'd it!), and caught up on sleep after the two nights.

Charlotte is doing okay.  She was low energy on Saturday, and then seemed to be doing a lot better Sunday and Monday so we thought we were out of the woods.  But, yesterday she was a bit 'off', not eating and cranky.  This morning there was no improvement although she did drink her pediasure.  I attempted to look in her mouth and saw what I'm guessing is a mouth sore on her cheek.  I decided it was time to try the morphine and gave her a dose this morning and she did seem a happier girl because of it.  It is so hard to gauge what to do when she isn't able to say "mommy, my mouth is sore".  While I'm not too keen on giving her morphine, I don't want her to be in pain and I want her to eat!

Stefan and I got to go to a rugby wedding on Saturday.  It was so much fun.  It was the first time we have left Charlotte without us when she hasn't been asleep. She did really well and I'm very grateful for my mom and step dad for helping out.  We see quite a bit of them so the kids are super comfortable with them.  We got another date last night to the PNE - lucky us.

all dressed up - a foreign concept!

I thought having been to the rugby wedding, it would be a good chance to blog about our other family....

Our SFU Rugby Family
For those of you who don't know, both Stefan and I played SFU rugby, it's how we met.  Now we aren't the only couple to have met through SFU rugby.  In fact, our club is known to be a bit 'incestuous'.  On Saturday we could think of 11 married SFU rugby players.  Yep - beat that Lava Life and Plenty of Fish!

Stefan and I were both pretty dedicated club players, both serving on the executive committee for a few years, and doing more then our fair share of bartending duties at club events.  We are still dedicated to this club even to this day as non-players.

I can't tell you how supportive the club has been to us.  They were a large contingent at our wedding, have provided gifts when both our babies were born, and now have been supportive as we have gone through this 'rough patch'.  With meals, or just texts, cards and calls - they have been lifesavers and many of my closest friends I found through SFU rugby.  We feel pretty lucky to be part of an amazing group of people!

Call it a Clan, call it a network, call it a tribe, call it a family.  Whatever you call it, whoever you are, you need one. 

~Jane Howard