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 

no rest for the weary....yet

We are home!  Charlotte finally hit her magic number with her 2pm blood test and we left the hospital around 4:30.

I'm always happy to be home.  Especially when Charlotte eats more her first meal at home then she has the past week!  Charlotte's mouth has not gotten worse - which is great.  She was very co-operative with her baking soda rinse before bed and has been good about drinking fluids.

We came home with quite the arsenal of drugs:

• 6MP - her chemo drug, she takes this Friday, Saturday, Sunday and Monday.  It needs to be taken on an empty stomach, so I usually just wake her up before I head to bed to give it to her, usually around 10pm.
• Leucovorin - this is the 'antidote' to the methotrexate, and helps Charlotte to clear it.  This is the first time we have taken it home though.  She will just be on this for 24 hours, she had a dose at 6pm, will get it again at midnight, 6am and noon tomorrow, hence the no rest for the weary.  
• Morphine - for pain.  Might seem a bit overkill but since we can't use tylenol, since it masks fevers, morphine is the go to pain reliever.  Hopefully we won't need to use it.
• Ondansetron - this is for nausea.  Based on the past two rounds, she will probably get it tomorrow and Saturday and then we should be okay.
• Septra - Charlotte has been on this since the beginning and will be on it I believe for a few months past maintenance (so basically the next 2.5 years).  It's an antibiotic which is used to prevent this one type of pneumonia which cancer patients are susceptible to.  She gets this twice a day on Saturday/Sunday/Monday.
• Triple cream - this is for her bum.  It's a concoction made up by one of the oncologists at childrens, and is just a mix of desitin (the strong diaper cream you have seen on the shelves), polysporin and nystatin (I'm not sure what that is!).
• Glutamine - which she gets twice a day to also help with the mouth sores, you can find it at a health food store
• PEG 3350 - which is to help her do her # 2's and is not new to us as she was using it before she was diagnosed.

Tomorrow my Mom will be by to help and we'll all be cooking a turkey.  We will spend the day catching up on the stuff that was ignored the past week like a grocery shop and watering the plants! The leucovorin will be finished up, and with turkey in our belly, we should sleep pretty good tomorrow night - it can't come fast enough!

Big thanks for all the prayers, positive thoughts and nice messages - I believe they helped get us home!

fiddlesticks

We are still at the hospital.  I have taught Charlotte all the appropriate sentiments; "boooo", "gosh darn it" and "fiddlesticks".

We had thought Charlotte's antibiotics were done yesterday, but just as I was about to head home last night, the nurse told us the instructions had been changed and Charlotte was to continue antibiotics.  The nurse thought that this might mean that her blood cultures were positive.

Silly me googled 'positive blood cultures' as I had no idea what it meant.  Gave myself a little scare but tried not to get too worked up about it as Charlotte was looking healthy.  This morning the Doctor clarified that the blood cultures were negative - whew.  The antibiotics were just continued to be 'safe' (they are done now). 

Unfortunately, her methotrexate level was still not at the magic number.  It needs to be less then 0.1 to go home, and it was at 0.11, argh!  Usually the levels are checked every 24 hours, but they checked it again at 12 hours for us (2pm) in the hopes we could go home.  Unfortunately it was still at 0.11.  It has been really really slow this time.  It took 24 hours to go from 0.21 to 0.13 and another 24 hours from 0.13 to 0.11.  Fingers crossed that it will be clear for tomorrow.

Charlotte is sadly showing some signs of Mucositis, aka mouth sores.  This is a painful inflammation of the lining of her mouth.  When it gets bad, she won't want to eat or drink which means coming back to the hospital.  We will be watching it closely.  The chance of mucositis happening increases the longer the methotrexate stays in her system.  The doctor said they may reduce her dosage for her remaining treatment (I hope so!).  When we do get to go home, we will be going home with morphine to help her with the pain if it's needed and we will be rinsing her mouth with good ole' baking soda a couple times a day.  She also has some skin breaking on her bum, so we have her special cream going on that every 2-3 hours.

Despite the early signs of mucositis, her appetite is returning and she is starting to nibble at stuff.  She is super playful, and got to 'play nurse' and sit at the nurses desk when I ducked out for a coffee.  The long hospital stays just seem to effect mommy and daddy.  The windowless room and hospital food don't help.  We can't wait to get home, but at least Charlotte is a happy girl. 

On that note, I just want to clarify that I'm not complaining (ok, maybe a little bit).  Stays on the oncology ward always have me counting my blessings.  There are many other families here who or either going through a rougher time, a rougher diagnoses, or just don't have the support we do.  Thank you to everyone for your help, prayers and good wishes!

Still up for playing and crafts!

Jinxed us?

Well, I went and did it, jinxed us that is. On Sunday morning, Stefan and I were both thinking this had been the smoothest weekend yet, Charlotte had done so well and was in great spirits! I even went so far as sending off an email to set some plans for a hopeful trip to the Okanagan next week. Then, out of nowhere, Charlotte spiked a fever, not too high, 38.3, but that's enough to set wheels in motion around here. Blood had to be taken and antibiotics started.

This was new territory for us as Charlotte hadn't had a fever since she was diagnosed, and even then she didn't have a fever.

The fever broke this morning though, and Charlotte was in a great mood all morning. She gets cranky around lunch time- needing a nap.

The drill with going home after a fever is:
1. The blood cultures have to be clear after 48 hours
2. Fever has to be broken and she has to 'seem well'

She still hasn't quite cleared her methotrexate (chemo) yet. The earliest we can go home will be tomorrow night (48 hours since her fever). We are cautiously optimistic for a Wednesday release!  She is looking quite pale at the moment, so I suspect she may need a blood transfusion tomorrow.

And, dependent on how her counts are, there is still the possibility of a trip next week!

Here is Dr. Charlotte in the hospital playroom.....

At least that makes one of us

Conversation with Charlotte.

Me: Charlotte, tomorrow we go back to the hospital for a sleep over.
Charlotte: yay!  Toys!
Me: that's right, we'll get to play with toys
Charlotte: and butterfly, and band-aid (butterfly is our name for the device that gets put into her port for her IV hook up).
Me: yep.  Now you won't be able to have breakfast tomorrow, but after you have had your poke in your back at the hospital you'll be able to eat.
Charlotte: I'm so excited! (said with genuine little girl glee)

At least that makes one of us!

It's at this point Stefan and I exchange shrugs and smiles and I know we are both thinking how proud we are of our resilient, amazing little girl!

2 down 2 to go

Things got better after yesterday's crazy morning.  Once Charlotte got some blood into her and a good nap, she was back to her normal self.  She was literally skipping out of the hospital when we got to leave at 3 pm. 

All in all she handled the weekend pretty well.  She cleared the high dose methotrexate within 48 hours which is a good sign that her system is doing what it should be.  We think the rash on the arm is from her hospital bracelet.  She also had the hoarse voice again, a side effect from the vincristine (another chemo drug), but the voice is already returning to normal.  No sore bum this time which is great.

We made it home to a more rested daddy who had managed an afternoon nap along with Nathan.  The crazy lightning storm hit as I was putting the kids down and Stefan had made a run to the grocery store.  I was a little worried thinking about my honey outside with that metal plate in his head.  I told my self I was over reacting, but the next morning I heard that there were two people struck by lighting!  One in Coquitlam and one in Burnaby.  Scary!  Glad Stefan wasn't out for long - that would be just our luck.

We are all pretty happy to be home and enjoying family time.  We will take Charlotte to get a blood test on Friday to see if we can get out of the bubble until our next trip to the hospital (next Friday, which will come way to fast).

"I own this place"

crazy morning

We are still at the hospital.  I arrived with Nathan to the hospital at 8 am to start my 'shift' to find one very cranky little girl and a very tired daddy.

Charlotte's hemoglobin level is low enough to warrant a transfusion, so she will be getting blood this afternoon.  Her ANC level is also low (.39) which means we are back in the bubble.  BIG sad face emoticon inserted here :( .  The chemo has cleared though, which means we should get to go home today.

Stefan didn't sleep well last night, and I had managed to convince him to have a little nap while I took the kids up to the playroom.  I maneuvered our way up to the playroom, Nathan in one arm, holding Charotte's hand with the other, all while moving her IV pole.  Just as we get to the playroom though, Charlotte gets quite upset, and has a little throw up.  So....  I have to call my poor honey up to the playroom to help us back downstairs and get Charlotte some gravol and cleaned up.  On our way down, I notice a rash on Charlotte's arm and her neck.

We get the Dr. in to look at the rash which I am supposed to monitor over the next bit.  She hasn't had anything new to warrant a rash, hoping it's not an infection.

Charlotte is now napping, Stefan has opted for coffee.  Hopefully he can manage some naps today and we will all be home tonight so he can have a sleep in tomorrow morning. 

Packin' it in

Well, no news is good news.  We are back in the hospital, but a little better prepared on what to expect with one weekend under our belt.  Today was clinic day, they haven't hooked up her chemo yet as I type this, but it should be going before midnight.  They have to have her well hydrated and her PH at a certain level before they can start.  We spent the day playing in the playroom so it goes by quickly.  Tomorrow will be the more difficult day as she will be room bound while her chemo is going (24 hours).  Sunday and Monday I expect she will be on the tired side but will want to hit the playroom and have playtime with mommy in her room.  I can guess that we will have watched The Wiggles about 15 times before we come home!  We have called in some recruits to help watch Nathan when Stefan and I spell each other off - we try to keep his trips to Children's to once a day.

Some highlights from our break:

1. We went to Sechelt for our second camping trip!  We spent a night camping, and a night with Grandma and Grandad and had a fantastic visit.  The kids were great again.  This trip we did have to have chemo.  We later joked that perhaps one day I can provide tips on 'camping with chemo'!
2. A play date - it was so nice to have an actual playdate for Charlotte (and Nathan too)!
3. A dinner out with friends who were in town from Whitehorse - the lovely couple we saw married in Hawaii in January.
4. I've come to the realization that I shouldn't bother ordering Charlotte her regular bagel with cream cheese from Timmy's and should just order her a side of cream cheese!
5. Nathan climbed steps.  I didn't see it, and no repeat yet - but all of a sudden he was in the kitchen when I had left him in the family room (a two step climb).  I have yet to see it (or get it on camera) - stay tuned!
6. My little girl continues to amaze me.  She is such a strong girl.  She now pretty much is fully co-operative for the nurses and Dr.'s (and loves to help).  She's been great at taking her pediasure (a meal replacement drink that many parents have a hard time getting their kid to drink - it was a process for us, but she now will even ask for the stuff).  This should mean no need for a feeding tube in the future.  She weighed in at her heaviest so far at 11.4 kg today! 
7. We learned that the next phase, delayed intensification, is the hardest.  Charlotte has handled everything so far really well though, so no reason to think the next phase won't go okay too.
8. Our third annual blueberry picking expedition.  We have hit the same wonderful organic u-pick blueberry farm 3 years in a row now.  The first year we went is one of my all time favorite Charlotte memories.  She would have been about 15 months old at the time - not walking or even crawling.  She plunked down with that bucket of blueberries, and ate to her delight.  I loved the happy smile on my dirt covered little girl.  This annual trip is about the only time my girl will eat blueberries - I guess she just likes them fresh!  This year - it was again sheer happiness to watch Nathan enjoy a healthy helping of blueberries (and dirt)!  

 I'll leave you with some pictures from our annual blueberry picking trips:

2010

2011

2012

2012

2012