PIcs

Our Little Madeline

Paige's very swollen tummy (from the steroids)

And her chubby cheeks (from steroids)

Stages of Treatment

Okay this is mostly for medical minded people like myself.  But it will give everyone an idea of what Paige's treatment entails.  She has finished the induction stage which went from October 1 - November 2nd.  I will lay out the following stages and what treatments she'll endure:

Consolidation Nov 3 - 30th

• IV chemo (vincristine) once on the 3rd
• LP every week for 3 weeks (the 3rd, 10th, 17th),(they inject chemo, methotrexate, into her spinal fluid with every LP)
• oral chemo every day (mercaptopurine)

Interim Maintenance Dec 1 - Jan 25

• IV chemo every 10 days (vincristine and methotrexate IV)
• One LP on Dec 31st

Delayed Intensification Jan 26 - Mar 22

• LP once a month (Jan 26, Feb 23)
• IV Chemo (vincristine and doxorubicin) once a week for the first 3 weeks (Jan 26, Feb 2, 9)
• Dexamethasone for a week following Jan 26th and Feb 2nd IV Chemo
• Muscular shot of chemo, into the leg, once.
• oral chemo (thioguanine, cytarabine) for 2 weeks Feb 23 - Mar 8

Maintenance Mar 23 - June 14 (12 week cycles repeat until Dec 1, 2010)

• IV chemo (vincristine) once a month, followed by 5 days of dexamethasone
• Oral chemo, mercaptopurine, every day, and oral methotrexate once a week
• LP every 12 weeks (first day of each cycle)

Before she starts each phase her blood counts have to be at certain minimums.  If her counts are too low, the start of the phase is delayed until her counts have recovered.

All her chemo drugs seem to work in a different way to prevent cells from multiplying.  They don't actually kill the cells.  I think the cells die on their own, as cells do, but are prevented from multiplying, so there are no more cells made before they die. They inject chemo into her spinal fluid during an LP to make sure there are no cancer cells in her CNS.  This prevents the cancer from spreading to her brain.

Last Biopsy

Paige had her last bone marrow biopsy, yeah! So now she just has frequent LP's to make sure the cancer is staying out of her CNS.  I'm allowed to stay in the room for those, so I'm really happy.

I was really stressed out over the SMH vs. BCCH thing.  I just find that my mind can only handle so much at a time.  I still think at least once a day, "is this really happening to us, to Paige?".  Even though it is a somewhat longer drive I'm just so much more relaxed at children's. We saw a bunch of nurses we know today.  And all the dr'.s in her biopsy we knew.  I've developed a report with these people, and I'm just not ready to start again with a whole new set of staff.  I guess with my depression I can only cope with so much.  And these people are helping me cope.  They put my mind at ease. And when we're there I can relax cause of feel like i know them, and can therefore trust them with my baby.

So we spoke with our primary nurse alison today and she mentioned that dr. davis (our oncologist) wanted to talk to us, and make things as least stressful as possible.  I get the feeling I'm not the only person who has felt a little "stalked" by them.  Exuberance is great! And I'm happy they love their job, but I don't like to feel like they're working on commission and need me to come to their program.  Which is how I was feeling.  Dr. Davis reassured me that I could continue to come to BCCH, and if later I decided I wanted to do some or all of paige's remaining treatment at SMH that would still be an option for me.  I guess I'm somewhat attached because these people helped me navigate the shock and disbelief we went through when Paige was diagnosed.  They're not perfect, they just happen to be the one's who were there.  I guess I'm rambling because I still feel a little guilty about SMH, that they're going to think I didn't like them or something.  Boy can I be crazy or what!  I just couldn't handle having directions and routines to follow from two different places.  It's hard enough to keep things straight without adding to it.

Paige's genetic studies came back: he said she's hyperlipoid? and has many double chromosomes?  I had no idea what he was saying, but the important thing he said is it's a good sign, and she should be fine, the treatment should work. She doesn't have any of the resistant chromosomes that can be hard to fight.  So her prognosis is excellent!  We're back on the 3rd for her first of 3 LP's and then after that she starts intermaintenance.  I'll probably post about the different stages once I have a chance to go through them.  Before she starts each stage they have to make sure her counts have recovered.

Dr. Davis was surprised she still had so much hair.  We definitely notice it thinning, but we're not finding a lot of hair on her pillow or anything.  He said he believes it's a valley thing.  He's had a fair amount of patients from the valley that didn't  lose their hair like most do.  Perhaps during the stage delayed intensification she might lose it since the meds are quite intense during that stage.

Thank you everyone who had purchased items form us to help us during this time off work!  We really appreciate it.  We have lots of silicone bracelets coming this week, plus pins, lanyards, and beaded bracelets.  We also have t-shirts left, but no more size large.  Thank you for keeping us in your thoughts and prayers.  We love you!

Dexamethasone

I was talking to someone (sorry I can't remember who) about why Paige is on Dexamethasone and  I've sorta found an answer.  Apparently Dex causes some white blood cells to "commit suicide". So it helps rid the body of leukemia cells.

Fundraising

They've finally arrived!  Could everyone who ordered the beaded bracelet let me know if they want a 7.5" or 8". Of course you can try it on when it's delivered and exchange it for one that fits. They forgot to put the silicone wristband into the package, so they're coming with my next shipment, which they said they'll rush!

Paige seems to be a little bit better today.  She seems a little chipper, and not as ornery.  

THANK YOU KATHY! For picking up the parcel for us, much appreciated!

First Visit to Surrey

Yesterday we got a call that we were to go to Surrey (SMH) for our wednesday appointment.  They would do Paige's IV chemo and bloodwork, and then we'd get to meet the staff etc.  It was quite stressful however because we had just finished fighting with Todd's work insurance company.  They have denied him short term disability.  They say he has to be sick.  So we're going to the Dr.'s next week and hopefully we can work something out.  I've started his application for EI just in case.  It really shouldn't be this hard!

Our appointment at SMH went well.  Paige's bloodwork is really good right now, so that's encouraging.  We were very concerned about her stomach, it's so distended.  It looks like she's carrying a balloon under her shirt. I can't even put fitted pants on her, they have to have an elastic band!  But she's pooping and farting up a storm, so they're not too concerned right now.  We just have to keep watching it.  Apparently it's common with kids on dexamethasone.  

So she has her last bone marrow (hopefully forever!) on monday, which will be done at BCCH.  Then she kinda has a break.  She finishes the dexamethasone, thankfully, on the tuesday.  Then on November 5th as long as her counts are okay, she'll start the next phase of treatment called consolidation.  She'll have an LP every week, which they will use to inject chemo into her spine.  She'll have one does of IV chemo on the 5th, and she'll also start oral chemo on this day.  Oral chemo is given once a day, every day.  It's just a pill we have to crush.  I believe she'll be on this right through to the end of treatment. After consolidation, which ends near the end of November, she starts interim maintenance.  If I remember correctly she'll visit the hospital every 10 days, but will only be receiving the oral chemo.  This will probably take us into January. Around February she'll start the next phase "delayed intensification".  Apparently this is basically the treatments during induction and consolidation put together.  They warned us she will be really sick during this time period.  Basically Feb/Apr will be the worst time for her. But the Dr. does think that, when she's up to it, attending dance class would be good for her.  So we'll see how she does.  She is so tired now.  She lays on the couch all day, and takes long naps.  Today she went to bed at 4:30 and she's still sleeping! 

I couldn't carry her anymore so I had to buy a bigger umbrella stroller for her.  She's gained almost 1kg in a week!  Apparently they retain a lot of fluid due to the dexamethasone.

I've posted some pictures:

My NICU gals brought over a present for Paige (and for us).  She loves this remote control my little pony.  (We enjoy playing with it too!) We also played the my little pony board game they bought, Paige did really well!

Paige's preschool teacher sent a present as well.  Her classmates drew her a picture, so cute.  We love the coat and matching hat and gloves!

My niece's volleyball team honored Paige at their last home game monday night.  It was so sweet!  They presented her with a "Highroad Knights Volleyball" hoodie with #1 on the back, and a gold medal they had won from the tournament the weekend before. They were all wearing their orange bracelets to show their support!  We are so lucky to have such great people around us, holding us up during this difficult time.  It all seems a little surreal.  Thanks you so much Highroad Knights!

GREAT NEWS!

Paige's clinic Dr. called with her bone marrow biopsy results.  SHE'S IN REMISSION! There was <1% leukemic cells, down from 86%! It has to be <5% to be considered remission, so this is great!  So she won't need another chemo drug added.  We're ecstatic as we were worried she wasn't going to respond to the treatment. So now she'll have her regular chemo on wednesday and her biopsy on monday the 27th.  We should find out more of her treatment plan on wednesday.

Day 15/16

Our appointment and BCCH yesterday went really well.  We left the house at about 0620, and arrived there at 0810.  Our appointment wasn't until 0900, but they started us anyways.  They accessed Paige's VAD (pushed a needle through the skin, into the "sponge", that has a tube attached to it). Paige was "nervous", her words not mine, but she did really well.  The numbing cream worked really well.  She may tell you different, but she didn't even feel it going in. First they did her blood work, to make sure she had enough platelets before the LP.  She went in for her biopsy and LP, and it only took about 20min.  A resident did it this time, and for some reason I believe she did a better job than the last Dr.! Don't know why. Then they administered her IV chemo drug, which only takes about 5 min.  Then we just waited for the sedation from her biopsy/LP to wear off.  And then we were on our way at about 1130.

We go again on wednesday just for her IV chemo, which is when we'll get the results of her biopsy and know if they'll have to add another chemo drug.  Her next biopsy is scheduled for the 27th.

Although Paige is challenging at times, I still can't believe how good she is. Honestly I would be a real brat if I had to go through all this stuff.  She doesn't kick and scream when she goes for these procedures, it's truly amazing.  It breaks my heart when she thanks me for silly things like letting her come with me on an errand, or buying her cheese sticks.  It really hit me last night, that she just shouldn't have to go through this crap, she shouldn't have to be so co-operative.  I talked to a few people in the waiting room.  One little guy was diagnosed with an esophageal tumor at 4 mo.  He spent the first year of his life on the ventilator, and therefore sedated, while they did chemo and radiation.  So he's really developm

entally delayed.  She said they've been treating him for 3 years now.  She knows another kid that's been going through treatment for 8 years.  It reminds me that we're not alone, and it could be much much worse!

I have to say I'll be happy when she's off the Dexamethasone though.  She did sleep through the night last night.  But she ate like a pig come morning.  Two bowls of cheerios with milk, 4 bear paw cookies, and a full glass of strawberry milk. About an hour later, a cup of applesauce, and a cheese stick.  Whew my tummy hurts just thinking about it.  She is totally addicted to McD's, but she needs extra fat and calories, so I'm not worrying about it.  She has the same thing every time!  The dietitian warned me kids on Dex crave salty food.  She said she's seen a 4 year old eat a pound of bacon.  Well we didn't listen, and gave her some b

acon, and now she asks for it at every meal!  Oh well, takes after her mom I guess.

She's kinda pooped today, and bit nauseous I think, so I'm keeping up on the gravol.  She handed me a chunk of hair last night, only about 10 strands, but it's definitely starting to happen.  I keep bringing up the fact her hair's going to fall out to get her used to the idea, and she's stopped complaining about it, so perhaps it's working.

I buzzed my hair with the clippers. I used the largest guide though so it's not extremely short. And dyed in black and pink again.  I let Paige watch me buzz it, hoping she'll let me do hers when the time comes.

Day 14

You know, I keep commenting to Todd how it doesn't feel real, that Paige is sick.  We're getting help from people who just know about Paige from other friends and family. It's amazing.  I keep thinking, "why, this isn't such a big deal?".  But then I remember that life doesn't stop for us! So the help is truly appreciated!

Paige's behavior has really taken a turn for the worse. I know they warned us, but I was still unprepared.  She's incredibly whiny, and will only let me do anything for her.  She just screams at Todd, which makes me feel bad for him.  But then I end up having to deal with all the meltdowns.  For instance she jut spent the last 45 min crying because we don't have cheese sticks.  She wants me to go out and buy some for her.  But if I start doing that, I'll be going to the store every hour! We were up most of the night with her.  She was hungry all night, and nothing seemed to satisfy her appetite. But we'll just keep taking it one day at a time.

My sister-in-law Tracy has volunteered to help us financially by selling some leukemia awareness items.  She'll have silicone wristbands, t-shirts, and a few bead bracelets. I will post pictures once she's received the order.  And of course we're not asking people to buy.  We're just providing a way to help for all the people who have asked how they can support us. I will post more info in the future.

Paige has received so many gifts, it's truly amazing.  She's still receiving mail, which she finds really exciting.  So many people are thinking and praying for us, I just know that we're going to be okay!  Thank you all for your visits, thoughts, prayers, support, and gifts for Paige.

We're off to BCCH tomorrow for another bone marrow biopsy, LP, and chemotherapy treatment.  I'm assuming it's going to be a long day.  She's looking really pale again these days, and I'm thinking that she'll need another blood transfusion.  They'll check her counts again tomorrow.

I've told her that her hair is going to fall out, but I don't think she really understands.  I've said it's because of her leukemia. I'm scared that if I say it's from the medicine she'll fight every time we need to give her some.  She just tells me that she doesn't want it to fall out.  I've shaved my hair pretty short, so we're hoping she'll let us shave hers when the time comes.

Day 11

Had our first clinic appointment at BCCH yesterday.  Paige's bone marrow biopsy wasn't clear so she has to have a repeat on the 15th. Her very first one showed 96% leukemic cells, and last weeks showed a decrease to 86%. Not a very large drop, but at least a drop.  They may have to add another chemotherapy drug, depending on the results of next weeks biopsy. If they do add another drug it will add another 2 weeks onto her induction phase.  Apparently after induction she has a week or two break, and then consolidation (a month or two). And then she starts inter-maintenance, which is when the 2 years of maintenance technically starts.  After inter-maintenance she has delayed intensification, and then just maintenance.  I'm not sure what's involved in each stage.

They say Paige's hair will start falling out this week.  So we've cut it short to make it less shocking.  She's tried on some bandana's my friends Kristy and Kathy made her.  She looks so cute.  I can't even imagine what she'll look like bald!

Day 9 - Home At Last

So we finally made it home last night.  We didn't leave the hospital until after 6:30pm.  Paige needed a blood transfusion before we left, and for some reason it took the lab like, forever, to get the blood ready.  And then it needed to infuse over 3 hours! We got her prescriptions filled at the outpatient pharmacy at Childrens.  It was a little overwhelming at first cause there seems to be so many, but it's not as bad as I thought:

Dexamethasone 2xday (steroid)

Peg 3350 1xday (a powder added to fluid, prevents constipation)

Ranitidine 2xday (protect stomach from steroid)

Septra 2xday on Fri, Sat, and Sun every week (antibiotic)

Gravol when she needs it

Ondansetron if the Gravol doesn't work

Emla cream to numb her skin for pokes

She has an appointment at Sears today to get her picture taken.  We hadn't done her 4 year old pic yet, and I want it done before her hair falls out.  Then we're going to get her hair cut short so it's not quite so shocking when it starts to fall out.  We're back at Childrens on friday for bloodwork and to find out the results of her bone marrow biopsy. The treatment she receives, after this "induction" month, will depend on these results.  We'll continue going to childrens for the rest of the month, and then we'll be "transferred" to surrey. 

A friend of my niece, Vanessa, wrote the following song for Paige:

Gotta a prayer in my heart that I don’t dare cry
Got this voice in my head and I don’t know why
But how can such a small life 
Be filled with so much pain
Only for a moment that mountain disappears
To see that four year old again

See the love for that girl
through the eyes of a caring mother
See the fear for his princess
in the eyes of a faithful father
As they lean down and say

Don’t be scared, my baby
We’re always with you to the end
One day you’ll look on this 
As a stepping stone
It’s just on a little page
In a part of your story
Hopeful eyes look into her sweet face and say
You’ll turn this page

Daddy lies by her side 
When the pain is over taking 
You’ll be honor role and prom queen 
It’s all in the making
And when that boy you bring home 
Makes you cry
I can’t promise I’ll give time to explain why

So Don’t be scared, my baby
We’re always with you to the end
One day you’ll look on this 
As a stepping stone
Its just on a little page
In a part of your story
Hopeful eyes look into her sweet face and say
You’ll turn this page


~Meaghan Westeringh~

Day 8 - Home today!

Paige has had her bone marrow biopsy and LP done. She's such a trooper! She had to have another transfusion of platelets last night, and she's going to get another transfusion of RBC's any time now.  Then we just wait for the Dr.s to write the discharge order and give us our prescriptions and we're on our way!

Paige's appetite has really picked up!  They warned me that the dexamethasone, the steriod she's on, would increase her appetite.  She just ate a bun with cheese and two pieces of pizza.  That's a lot for my little grazer.  Lots of things are going to change around our house.  She needs to drink lots and lots of water.  And she needs to eat more fruits and vegetables.  And to encourage her to do so her parents need to set an example.  She'll also need to have more scheduled meal/snack times.  She'll need a bedtime snack, and something at her bedside cause she'll probably wake up hungry in the middle of the night.

It's weird to think that all her bodily fluids are caustic now cause of the chemo.  I was thinking that I'm actually glad I'm not pregnant, cause I would worry about the baby being exposed to the chemo.  We're supposed to double bag her pull ups and stuff before putting it in the garbage. What a hassle! But we'll cope. 

Day 7 - Home Tomorrow?

Paige was sick last night.  Puked all over herself.  Yuck. But with some Gravol she was fine and we had a nice long sleep in (10am). I don't know if it was the chemo, or if it was from the McDonalds I wisely fed her for dinner.

Met with the dietitian today.  I have my work cut out for me.  Apparently Paige is going to eat us out of house and home during the first month.

Then the discharge nurse came to prep us for tomorrow.  All the appointments and meds are a little overwhelming.  She will come to either Surrey or BCCH for her chemo every wednesday.  She will also need bloodwork another time during the week, which we can have done in chilliwack. The results of her bone marrow aspiration tomorrow will decide what "arm" of the protocol she'll follow.  In other words there are a few different treatment paths, and we won't know which one she'll follow until friday.  She'll have another bone marrow aspiration and LP on the 29th.  Her induction phase is done November 4th.  We'll find out friday what happens after that.  It'll be about 6 months before she's on maintenance.  During maintenance she'll have chemo once a month and an LP every 3 months. She'll also be on oral chemo at this time.

After we go home she'll be started on Septra an antibiotic that prevents a certain kind of pneumonia that only people with weakened immune systems get.  She'll take this 3 days in a row every week.

If she has a fever we have to call right away to get instructions. She may have to be admitted for antibiotics, depending what her blood counts are.  We also need to keep up to date on her blood counts, as they'll let us know when she's more prone to infection. We have to get a mask and gloves for when we prepare her oral chemo at home.  We have to cut and crush the pill, so we need to take precautions.

So hopefully we'll be going home tomorrow.  That's the plan anyways.  She'll get a platelet transfusion around 4am, and her bone marrow aspiration will be around 8am.  Then we have to wait while they get all are discharge stuff ready, prescriptions filled etc.  I can't wait!

Day 6

Well I had a lovely day today.  I really enjoyed my day at the spa. I have to say Blush salon does a really good job!  For the pedicure you sit in this big massage chair that is attached to a "sink" on the floor.  Ahhhhh, I had a really good nap.  Unfortunately I think I'm getting Paige's cold.  Just a sore throat and aches and pains right now, so nothing major.  Poor Todd was inundated with people today.  Discharge planners, dietitians, Dr.'s, music therapy etc.  Apparently I didn't pick a good day to play hooky!  I couldn't totally relax.  As much as I needed a day away, I couldn't wait to get back to Paige.  It was hard leaving things in someone else's hands.

Things are carrying on.  Paige's IV is now running at 25ml per hour, so she's almost weaned from it.  And she had 3 poops today, which was really great cause I think it was causing her some discomfort.

Thought I'd post some pictures:

OH and HAPPY BIRTHDAY GRAEME! WE LOVE YOU!

Day 4 and 5

Sorry I missed a night guys.  I was so tired. Paige had a little melt down last night, and it took over an hour to get her to stop wailing.  But she is okay.  She's tired of being here though.  She really wants to go home. Only a few more day I tell her.  She's been out on the patio both days, and just loves it!  As long as she wears a mask in the hallways, she can go outside.  She has a cough, which I think is from her asthma, but they have to be careful.  If it is an infection they don't want the other kids to get it.  We've had lots of visitors the last few days, which has been a blessing.  It helps entertain Paige, and she really needs that socialization.  She has received lots of presents (and so have I), and we are so grateful! At this point we're just trying to be patient.

They've lowered her IV rate to 50cc/hr which is nice (it was at 120 at one point), and they've discontinued one of her meds.  It's job was to help her body get rid of the cells the chemo is breaking down.  They're also going to start weaning her off of the bicarb they've been adding to her IV fluid, for some reason this helps get rid of the cell fragments as well.  All in preparation for sending her home, which is somewhat comforting.  Tomorrow I'm off to chilliwack for my spa day (thank you mom Van E, Tracy, and Danielle).  Tracy has kindly offered to distribute the bracelets, thanks love!

She got her shot of "peg" today, her other chemo drug.  It's once monthly, thank God!  It takes two intramuscular shots into her legs.  She was not impressed!  But she got over it really quickly.  I'm so proud of her!

I may stop off at my work on my way back out to children's, maybe around 6:30 or 7pm.

Day 3

Today was an okay day.  Unfortunately one of Paige's meds has a history of turning kids into "monsters" (the Dr.s choice of words not mine).  In other words she's extremely moody!  It's like we hit the teen years early!  What's hard is knowing how hard a line to take with her.  I mean I don't want to let her get away with everything because she's sick, cause how do you change back once she's well again.  But at the same time, she doesn't really have any control over this behaviour.  So we're doing a lot of distraction.  And when she starts her very loud "whah, whah" we've found ignoring her is sometimes the only thing that works.  But we're learning fast.  This evening when she kept punching me no matter what I said, I gave her a pillow and told her to punch that.  It put a big smile on her face. But it is emotionally draining.  The sad thing is I know she doesn't want to act that way.  If she actually hurts me, she's just devastated.  She says sorry and just breaks down crying.  Breaks my heart everytime.  But how does a kid deal with these things?  She just doesn't have that much life experience to know how to cope with her feelings of anger and frustration. So Todd and I will have to teach her.  A hard lesson to learn at 4, something else she shouldn't have to be going through.  But the fact that she still laughs with me gives me hope that emotionally she'll get through this and still be the same Paige.

Otherwise today was an uneventful day.  She takes her meds, usually in applesauce or pudding.  I think they're going to lower her IV rate soon, which will be nice.  She goes through 3 pull ups a night, and still leaks, so I feel like a hotel maid, changing bed sheets everyday!  Fraser Health runs a pediatric oncology program in Surrey.  I guess our Dr. referred us because one of the Dr.'s from there came to see us today.  He was super nice and spent a lot of time explaining leukemia to us!  At first I was unsure of taking her anywhere but BCCH, but he really impressed me!  I found out that we all have leukemia cells in our body.  But our immune system kills them off before they can multiply.  But kids like Paige have a defect in their "reading" system that identifies these cells.  Then they get a cold or something, and when the body sends out extra white blood cells to fight off the infection, these leukemia cells get released as well, but in greater numbers.  And since their body doesn't identify them, they are left in the blood to multiply and migrate all over the body.  He figures in ten years they'll figure out why some kids  "reading" system doesn't work.

He says that once kids are on the maintenance portion, you can't even tell they're sick.  He says more than likely her hair will grow back during this time.  So we'll just have to wait and see.

Tomorrow Paige can have a bath!  It's been a long time. First she had to wait 48hours after her bone marrow aspiration, and then she had to wait over 24hours after her operation.  So it'll be nice to get the sticky jam out of her hair, and the pee smell off her body.

The IV is out of her hand.  They're just using her port now.  She still cries now and then thinking she's going to get a poke, but calms down once we reassure her they can just use her port.

For all my nurse friends I have copies of Paige's CBC's and I will post them, maybe tomorrow in case your interested.  The Dr.'s are very happy with how she's responded to the transfusions.  Her platelets are at 120 which is excellent, even though "normal" is supposed to be >200.  Her hemoglobin is 77, but they're just holding off for now to see how she does.  Apparently kids can stand a lower Hgb more than adults.  So as long as she's coping okay, they'll carry on keeping an eye on it.  If it gets much lower she'll need another RBC transfusion.  She gets a CBC done every morning.  And her lytes are done every evening.  They're teaching us the side affects to watch for.  Not only from the medications she's on, but the disease process itself.  Apparently the break down of all these cells can cause things like a rash on her bum and sores on her mouth.

We look forward to a weekend full of lots of visits for us and Paige.  They really break up the day, we can't thank you all enough.  If you have any questions please leave a comment asking us, and if we don't know the answer we can find out while we're here.  You  might be thinking of something that Todd and I haven't considered yet, so ask away!

Day 2

Today was rough.  First thing in the morning we were told that Paige should have her surgery sometime in the afternoon. So she could only have clear fluids until 11am and then nothing until her surgery.  She was not happy about this, especially since she didn't really eat anything for supper the night before. She doesn't like jello, and for some reason I couldn't get her to eat a popsicle, which is usually her favorite treat. Finally at 11:30 (shh, don't tell the nurses) I got her to drink some apple juice and eat half a popsicle. She got another platelet transfusion.  Her plt's were 85 but they want them at 100 before surgery.  As it turned out they were still infusing when the porter came to take her to the OR.  The surgeon was supposed to come up and talk to us about our options etc etc.  But this hadn't happened yet.  But they had to take advantage of the OR spot.  So they gave us the quick explanation down in pre-op.  I had been told I could go in with paige and stay with her till she was asleep, but for some reason that changed.  Paige wouldn't go to the anesthetist so she sedated her in the hallway in my arms, and then took her.  It looked awful and for some reason I found this all very traumatic.  I also think that since I need to "hold it together" when Paige is around, that when she was gone I just couldn't do it anymore.  So I had a good cry, but it actually made me feel better.

She went in for surgery just before 4pm, and we had her back in her room at 5pm.  It went well and she now has a VAD (venous access device) so she doesn't need pokes for blood work anymore.  It's all making it much more real, seeing her walking around with the dressing on her tummy.  I keep thinking, only sick kids need these! She has such a positive cute attitude! I was on the phone and didn't hear her say she had to pee, so she had an accident.  She was quick to point out it was my fault, and now I would have to go to the Dr. for an arm squeeze (blood pressure), poke, and nose tickle (nose suction).  We all had a good laugh that the "minor" surgery she had wasn't included in that list!

Most of our visitors saw Paige today. My parents unfortunately showed up just as Paige was going to the OR.  But going for coffee with them was a much needed distraction. My cousin Andrew, his wife Andrea and their kids came just before we got Paige back from recovery. She wasn't at her best at this time, but I really appreciated the company.  Todd received free Canucks tickets from the Child Life Specialist here, so he stayed until she was back in her room and then he was off for a night of fun.  I've informed him that monday is my day!  I'd like to head home for a shower and nap in my own house, and maybe a mani/pedi at Blush Salon. I think a little pampering will go a long way!  My brother Kevin and Sister-in-law Rochelle came to visit with my nephew Graeme, and my nieces Vanessa and Hayley.  Paige had recove

red by then and was her happy talkative self (I just don't know who she inherited this gift of gab from?). She insisted that everyone paint their nails with the new nail polish she received

 from Andrew and his family.  She didn't manage to convince Kevin and Graeme to take the plunge though.  That nail polish was a life saver, it finally got her out of her post surgery funk! Thank you Loge's!

 So now with her surgery done there's not much on our plate for the next few days.  She has blood work every morning and evening.  She takes oral meds around the same time. Sometime this weekend she gets her first monthly shot of "Peg", one of her chemo drugs. 

So just to remind anyone planning to visit I might not be around on monday, but Todd will be here of course. Also I now have voice mail on my phone, so I won't miss any more calls!

Some info on her VAD:

Central venous access devices are small, flexible tubes placed in large veins for people who require frequent access to the bloodstream. A port is placed

 completely below the skin. With a port, a raised disk 

about the size of a quarter or half dollar is felt underneath the skin. Blood is drawn or medication is delivered by placing a tiny needle through the overlying skin into the port or reservoir.

Treatment Day 1 Summary

So yesterday Paige received her first chemo threatment.  She also had:

• RBC transfusion (blood)
• platelet transfusion
• Lasix (to get rid of the extra fluid, she was very swollen)
• and a Magnesium infusion, since it was low.

She had a bit of a rough afternoon, she was woken up from her nap and she's always been a bear for a few hours when this happens.  But she quickly rallied and by the time grandpa and grandma van egdom came to see her she was her happy talkative self!  In fact I haven't seen her like that for a long time. It's funny cause I've been mentioning to Todd so often that her demeanor has changed so much, and we thought it was because we were spoiling her.  Just goes to show I need to trust my gut feelings.

She was so sweet last night. I was feeling kinda bad that she had to go through all this. I told her I was sorry her blood had an owie and she had to be in the hospital.  She grabs my chin with her hand and looks into my eyes and says,"it's okay mommy, it's not your fault". Just broke my heart! Of course I've approached all this with my typical anal organization (ie the blog).  But it's helping me along.  Every now and then it hits me though.  I don't really worry that she won't recover, it seems that's very unlikely.  But sometimes I realize how long 2 years is. Sometimes I feel like it all must be a dream.

We're going to have some "teaching" tomorrow about leukemia from our nurse Liz. Apparently we get a really cool binder that has a rainbow on it.  Each section is color coded, and there's charts to keep track of her blood work results and so on.  Right up my alley! We're in for a long road but right now we're just taking it a day at a time.

Paige's hair will start falling out in about a week or two.  It probably won't grow back for the two years of treatment.  I'm not sure how she's going to feel about that.  She hates having her hair washed and brushed, so maybe she'll see it as a positive? So if there are any sewers out there who want to make her some cool bandana's with maybe dora fabric etc. I'm sure she's appreciate it.  And she'll need an assortment of hats.  

Thanks everyone for all your love and support.  It's overwhelming how large our circle of friends and family is.  You've all rallied around us, and there's no way I can express how much this means to us.

Day 1 of Treatment

So we got the final diagnosis.  She has ALL (see description above). Specifically she has B-cell ALL which is the easiest to cure!  She is considered standard risk (which is better than high of course!).  They had done a lumbar puncture (LP) to see if the cancer had spread to her brain and spine, but she had very few leukemia cells in her cerebral spinal fluid (CSF). So she is classified as CNS group II, which is really good!  She still will have frequent LP's where they will inject chemotherapy into her CSF.  It is very important to prevent the leukemia from spreading to her brain and spine, and the oral and IV medicine don't reach her brain.

They have done genetic studies of her leukemia cells to identify what kind of mutations she has.  Some mutations are more responsive to treatment, some are resistant to treatment.  They've identified one mutation and it is responsive to treatment.  It will take several weeks to get all the results back.

So she started her first day of chemotherapy today. This starts her 28 day induction phase.  She will get a chemo drug, Vincristine, once a week through her IV.  She will also take Dexamethasone, a steroid, twice a day, but this is an oral drug. She will get one dose of another chemo drug, Pegaspargase, once a month by injection into her leg.

On day 8 she will have another bone marrow aspiration and LP.  If these are clear she is in remission.  If they're not they will check again on day 15. Otherwise her next check will be on day 29.  As mentioned every time they do an LP they will inject chemotherapy, Methotrexate,  into her CSF. On day 29 98% of children are in remission.  But treatment must continue to prevent relapse, which used to be quite common, until they started the long treatment plan.  After this 28 day induction phase they begin the consolidation phase for a few months, then a break where she takes oral chemo every day, and IV only once a month. Then she starts the maintenance phase, which is over 2 years.  I know she's still on oral chemo, but I'm not sure about IV during this time.

If her day 8 bone marrow and CSF are clear she will be able to go home and continue treatment from there. If not she'll be here another week. She'll be able to return to school when she starts the maintenance phase, probably in January.

We'll be very concerned about infection.  During this whole process Paige's bone marrow will not be able to make blood cells very well.  Your blood cells consist of platelets, red blood cells, and white blood cells.  They can give her transfusions of platelets and RBC's but not WBC's which happen to be the cells that fight infection.

Paige is doing well.  She has her ups and downs, but is coping well.  She will need to have surgery in the next few days to insert a venous access device.  This is a surgically implanted "thingy" that they can administer her IV chemo through, and also take blood from for blood work. Right now her and Daddy are playing with the balloon the Brandon's gave her.