Sep 5th

Charlotte is here! Born Sep 5 at 8:02 am. 6lb 12oz. 19 3/4" long. Will be going home monday, will post more then.

Date Change - Again!

I'm now supposed to deliver on the 7th, as my OB wasn't given any OR time for the 3rd (long story).  So I'm an add on for monday, meaning I have no idea what time my C/S will be done at.

Date Change

Saw the OB on wednesday, she was not happy with my BP. So she added another med (labetalol), sent me for immediate blood work and arranged for me to have bloodwork done at each NST, which I have twice a week. So basically the plan now is to watch my BP very carefully, and if my bloodwork changes do an emergency C/S. As of the 3rd, if I haven't delivered yet, and my BP is still high she'll do the C/S that day by adding me onto the slate. She doesn't see that happening though (making it to the 3rd). But so far my bloodwork has been okay each time they've checked it, so you never know!

Paige's last appointment at BCCH went well. However her counts were still high so they've increased one of the chemo's she takes at home. Apparently this is normal, and there's usually frequent adjustments throughout the years. She's growing like a weed, and has way too much energy (I'm so envious!). She starts kindergarten in september, which I believe will be very good for her.

Friday

Paige's appointment went well.  She was sick again while we were there, before they even started anything.  She's puked once a day for the last few days, so perhaps she's caught a stomach bug. They were a little worried that her ANC (immunity blood cells) was high, it should be low with the chemo, but figure it was from being sick.  She's seems to be better now and is eating again so hopefully it was a short lived thing.

I'm doing the same.  I'll probably increase my insulin tonight since I'm still getting some high's (10.2 after breakfast this morning).  Still a small dose though.  Right now I'm taking 8u of N (long acting).  I'll increase it to 10u and see if that helps.  I go back the the diabetic clinic on tuesday so we'll see what they say.  I'm trying to get some work done downstairs. Our delivery date is coming up fast. And we don't just need to get the nursery ready, we have to move everyone! It's causing a little stress, but it will get done.

Insulin

Started insulin today.  Just give myself a shot every night before bed. Eventually will go to twice a day.

Paige and me are at children's tomorrow for a lumbar puncture and iv chemo.

OB

Saw the OB today. She's fine with everything my mat clinic Dr.s are doing, and is happy with them following me. She just wants to see me 4 weeks before my scheduled C/S. She was a little shocked with my sugars (I had a 12 yesterday after dinner!). But is letting my mat clinic Dr. handle it tomorrow (as in starting me on insulin). She's happy with where my BP is now. If it gets too high they'll adjust my medication. But if it's high and I'm spilling protein in my urine, or my liver enzymes are increasing, they'll deliver me right away. I measured 4 cm larger (my belly measurement) than last week, although the other Dr. had taken that measurement. So it'll be interesting to see what they get tomorrow. With my sugars so high it wouldn't be surprising if this baby was getting chubby really fast.

pregnancy update

okay so saw my prenatal dr. today. She's not impressed with my blood sugars. She's giving me another week and if I'm still in the 8-9 range she's starting me on insulin. She's happy with my BP but considering everything that's going on with me, wants me to be followed by an OB. My usual OB only likes to do repeat c/s so I'm being referred to a new one at ARH. She does some primary care and apparently does meticulous stitching in her c/s. So I will be followed by her. I hope my usual OB doesn't think I don't like him any more! I have another u/s at 32 weeks to check for fetal growth, and after that they'll start doing them more often (every 2 weeks?). They'll also start non-stress tests then. I think it's once or twice a week, but i can't remember for sure. I measured a little big this appt. so she's a little worried. Funny with the BP the worry is a small baby, with the blood sugars it's big.

26 week pics

Update

The perinatologist was fine with just having my GP check my blood pressure.  It's been really good! Apparently it naturally drops in your second trimester, and can rise again in the third.  She forgot to refer me to BC women's so the receptionist is going to look into it.

As for my long term disability...they wanted more documentation, but my psychiatrist and I agreed that I have a right to privacy and they have no right to request her progress notes from our sessions.  So she's going to contact them and see exactly what they need to process my claim.  She told me it would be detrimental to my health and my pregnancy for me to return to work at this time, so hopefully she can get them to approve my claim.

Paige was in for her third round of maintenance chemo on friday!  It was a very quick appointment, maybe half and hour.  Everything is going really well.  She's having problems with stool incontinence.  She goes back and forth from constipation to very loose stools, so I think that's the problem.  A direct side affect of this particular chemo!

Baby is moving like mad!  She is so much more active than Paige ever was!  I can already feel her foot with my hand, and can see my belly moving when she kicks! I'm having good days and bad days sickness wise.  Not as bad as when I was pregnant with Paige.

Perinatologist

So I saw the perinatologist on monday.  I was there for over an hour and a half.  She believes it's primary hypertension.  They'll monitor the babies growth regularly and monitor my blood pressure.  She wants me to return in 4 weeks to repeat the ultrasound (to check the babies growth).  But the annoying this is she wants me to go to BC Womens to see the specialist there.  I don't know of anyone with more credentials than a perinatologist, so I'm not sure why I need to make this trip.  Then I got a message today saying she reviewed my chart and wants me to return next week to check my blood pressure.  I have a perinatal appointment that week, which she knows, and she has me checking my blood pressure 3 times a day, so I don't really understand. Unless she found something more worrisome.  Like I need more on my mind.  So when I return their call tomorrow I'm gonna ask them to explain it to me.  Paige is doing really well.  Todd is feeling less stressed.  

Chewie

As if we don't have enough on our plate, now Chewie is going downhill.  He's had a tumor on his groin for ever, hasn't changed.  Our vet wasn't convinced it was cancer.  Well he started limping over a week ago, and dragging his right hind paw etc.  Found another tumor on his leg.  Decided to change vets.  Went online first and figured out that they're mast cell tumors, which boxers are very prone too.  They're also very malignant!  If you disturb them they can swell up releasing lots of histamine and cause the dog to have anaphylaxis. It would cost over $1000 to remove the one's he has now.  As for his leg, they aren't sure if it's arthritis, and sprain/strain, a bone marrow tumor, or a neuroligical problem.  They've put him on arthritis medication.  If he doesn't improve they'll want to do x-rays to figure out the problem.  The blood work and medication already cost over $300 and the x-rays cost the same.  I didn't think Paige would really care is Chewie died, but when I had to leave him at the vets for an hour, she broke down crying in the parking lot, saying nothing is as fun if Chewie isn't with her! Hopefully he'll live a lot longer.

2nd

Had our 2nd maintenance appointment today. Paige's neut's were over 4 which apparently they don't like.  They want them between 1-2, but they're going to leave her meds for now and see how she is next time.  Other than that she's feeing well.  A bit moody these days.  At first I thought it might be the oral chemo.  But then I realized she's just taking after her mom.  A bossy moody kid.  When playing with her cousins she really reminds me of myself when I was a kid playing with my cousins angela and sharla.  she's such a little mom!  

And on and on

My appointment with the perinatologist at Surrey is on May 25th.  My blood pressure has decreased the last few days.  The diastolic is 80, but that's acceptable.  The headaches remain though.  I guess they could be a symptom of pregnancy, not hypertension.

We've slowly started preparing things for our move downstairs.  Things are a little stressful around here as we still haven't heard from long term disbility.  I left them a message today informing them about my blood pressure, and that my health was being affected by their silence. Tomorrow I'm going to call and ask to speak to anyone that can tell me anything, since my case manager hasn't returned any of the 4 message's I left her. Arghhh!

3D Ultrasound

It's a GIRL!

Nothing's Ever Simple

Well last night, after suffering with a headache for a few days, I was feeling dizzy, stomach pain, and a really bad headache still.  I had been wondering about my blood pressure, but I figured it was a little early to be pregnancy induced hypertension, since I'm only 20weeks.  PIH usually developes later than that.  But I decided to check my pressure anyways cause I was feeling like I did when I developed PIH with Paige.  Well my BP was 200/100.  So we headed off to abbotsford and were seen by my Dr. there.  The concern with PIH is #1 the constricted blood vessels reduce blood flow to the baby, #2 you can develop a very serious condition called HELLP.  HELLP involves the liver, and you frequently experience very severe epigastric pain, which I was feeling. But they checked my liver enzymes and they were all normal.  I developed PIH with Paige, but I was 38 weeks so they delivered me the next day.  This time around it's a little more complicated.  Before 20 weeks they would classify it as primary hypertension (not induced by the pregnancy).  After 20 weeks it's considered PIH.  Over the years since I had Paige my BP has gone up and down, frequently being high, but not high enough that I needed medication.  So it's kinda hard to know what I'm experiencing.  They put me on an antihypertensive, and I'm going to see a perinatologist in Surrey.  A perinatologist is an obstetrician that specializing in high risk pregnancies, or pregnancies with complications.  They can do very detailed ultrasounds and what not.  My Dr. wants them to decide what to do with me.  Mainly whether to keep me on the antihypertensives or not. I had a routine prenatal appointment today and my BP was still high, although acceptable.  With PIH we generally worry more about the diastolic BP (the bottom number) because this is the blood pressure in your vessels when they're at rest (between heart beats).  Today in the office my diastolic was 82 and 78.  Generally the OB's aren't too concerned until the diastolic is above 95 (by too concerned I mean increased risk to baby, mom etc.).  Greater than 100 and things can get very worrisome. If my BP remains high, and therefore my blood vessels constricted, the babies growth can be restricted due to decreased blood flow through the placenta.  They will leave the baby inutero until they decide the outside environment is better than the inutero environment.  In other words if the baby isn't getting enough nutrition, oxygen through the placenta, then it's better off delivered and in the NICU where we can provide these necessaties.  They always try to wait until at least 34 weeks, as this is the benchmark (the smallest amount of weeks with the best outcome).  But I get ahead of myself and probably overwhelm you all.  The above is all worst case scenario.  For now I'll continue to take the antihypertensives and check my BP at home twice a day.  My Dr.'s hoping I'll see the perinatologist within the next two weeks, and they'll develop a plan.  Maybe it will resolve on it's own!  I'm not holding my breath though.  The headache's remain.  Luckily I was given the go ahead to take ibuprofen!  They usually consider it contraindicated with pregnancy, but you can actually take it up till 32 weeks.  So I'm happy about that cause tylenol doesn't do a whole lot for me.

I have to say I was so touched by the caring of my former co-workers at ARH.  When I mentioned to my nurse that I wasn't working because my daughter was going through treatment for leukemia, she said Oh I know about you, your daughters Paige right?  Funny since I had never met her before.  It's so nice to know that people care so much.  A few people came to check up on me and say hi while I was there.  They will truly always be my family, no matter where I work.

AWOL

Sorry I haven't blogged in awhile.  Didn't realize it had been so long.  Paige is doing well.  She seems like any other kid, enjoying the summer.  Her hair continues to grow, it's probably 1/4" long.  So a little more than baby fuzz!  I'll try to remember to update her calendar schedule.  She goes for her next chemo on May 15th.  We're losing our primary nurse because they're cutting back. We'll still have one, just not Allison.  Luckily since we're in maintenance we're kinda on auto pilot anyways. I'm already tired of Paige's meds, and we've just started.  She only has to take one every night.  Then another twice a day on the weekends, and one more just once on fridays, but it's such a pain in the butt to crush them and mix them in something.  Luckily I don't have any problem getting Paige to take them.  Most people struggle.  Although not all of them.  There was a 3 year old boy last time at the clinic who swallowed his pills whole!  My brother can't even do that!  Amazing!

My screening ultrasound was fine.  I was only off my dates by one day, so that's good news.  When the Dr. who will be doing most of our prenatal care (one I work with) got the results he gave us a call just to say hello and see how we're doing.  So nice!

I missed my last appointment with my shrink because I was hugging the toilet and didn't think I could make the drive in.  Then she's away until June.  So I'm thinking of seeing a counsellor here in chilliwack that I saw a couple of years ago.  Just so I have someone to talk to in between appointments.  I'd really like to not have to drive out to vancouver for my shrink appoitments, but I'm already comfortable with my dr., and I don't want to start over again.  Perhaps I can try to arrange my appointment to co-incide with Paige's.  Depends if they mind if she sits in on my appointment or not. I think the worse thing is not knowing when I'm thinking straight, and when it's the depression affecting my decision making.  I've tried to surround myself with only people that help me cope, and don't challenge my sanity.  Sometimes it's them and sometimes it's me, but I never know if cutting people out is really the right thing to do.  I mean, sometimes after spending time with some people, it takes me weeks to get over it.  I get so upset, and I can't let it go.  I don't know if it's them or me, but does it really matter?  If certain company makes me feel bad about myself, should I not avoid subjecting myself to that trigger?  I don't know?

It's been harder adjusting to Todd going back to work. Harder than I thought anyways.  I'm having a hard time getting motivated during the day.  By mid afternoon I'm so tired I can barely stay awake.  And I feel guilty cause even after Todd's gone back to work he's still doing most of the housework, cooking etc.  What am I doing?  I have no idea!

We still haven't heard if I've been approved for long term disability.  I've never really worried cause I've just always assumed it wouldn't be a problem, but now I'm getting nervous.  And Todd is getting stressed!  Perhaps I should just bite the bullet and call them. I'm scared to hear what they have to say.  I know I can appeal, but I've been without pay since April 1st.

Todd and I are trying to get healthy.  He's doing really well in exercising and decreasing his portion sizes.  We both have been eating a lot healthier.  Usually fruit and veggies go bad in this house, cause we never eat them fast enough.  But everything we  bought our last shopping trip was gone in a few days.  Yea for us!  Lucky for me I tend to crave healthy foods during pregnancy.  I'm not exercising, but if I make it through the day without taking a nap, it's amazing so hopefully my energy will increase enough to start.

My next prenatal appointment is next week.  And then on thursday I have an appoitment for a 3D/4D ultrasound.  I'm gonna find out the babies gender.  It's funny even with the appointment booked I go back and forth on whether or not I want to know.  Todd seems to have made peace with my decision.  My Mom really wants to know, although I'm not sure why?  I guess it's my last kid, and I did the surprise route last time, so I want to try knowing this time.  The ultrasound is really cool!  It's half an hour of viewing and they record the whole session onto dvd!  You can also broadcast it in real time online if you have family far away that you want to be a part of it.  You can also bring people with you.  But Paige and I have decided to make it a Paige and Mommy day.

I'm not really showing yet.  With Paige I didn't show till close to the end.  Mainly because a tummy already exists there, hee hee.  But the baby is moving a lot, which feels really weird.  I don't remember Paige moving this much this early.  But I guess it's normal.  The nausea comes and goes.  I still can't brush my teeth without a gag fest afterwards for about 10 minutes. My dentist keeps bugging me to come in for a cleaning, but I really don't want to puke in the chair!  Other than that I only occassionally feel nauseous during the day.  Just really thirsty.  Hope that isn't a precursor to gestational diabetes.

Anyways I'll post some pics from the 3D ultrasound and hopefully some of the video after the appointment.  What a great b-day present for me, hey?

Here we Go

Paige's bloodwork was good on friday, so she started maintenance.  She's feeling well, and her hair is growing really fast!

Return

Well Todd has returned to work.  It was time, and luckily they were calling people back after mass layoffs, so that takes one worry off our minds.  It's good because it forces me to pull myself out of bed and actually look after things around here.  I am so tired these days.  I don't know if it's the depression or the pregnancy, but it doesn't really matter, since either way there's nothing I can do about it.  Paige's hair is starting to grow back which is really exciting.  We're at childrens friday. Hopefully her blood work tomorrow will be good enough to finally start maintenance!

Still Delayed

Paige's counts actually went down, so we were not at childrens yesterday.  She's now scheduled to start on the 17th.

Blood work Today

Well apparently they want to start Paige now instead of waiting for a week.  I guess the long weekend puts them behind a day.  So Paige had to go for blood work today.  Her counts were .6 on saturday, and they only need to be .75 so they're hoping they've gone up already.  If the count is high enough she goes in tomorrow for her LP and chemo at 10:30.  Which is really late considering she's not allowed to eat!!!

Heard the baby's heart beat today.  Paige was really excited!

delayed again

Paige's counts weren't high enough to start maintenance on monday as planned.  So I'm assuming we'll wait another week, and we'll check her counts on the weekend again.  Paige seems to be feeling well.  She has lots of energy, and is really enjoying the nice weather.

Nothing

Nothing much going on around here.  Children's never called after Paige had her bloodwork done so I'm assuming it was fine.  She needs bloodwork again tomorrow, again checking to see if she needs a transfusion.  And then again on saturday to make sure her counts are high enough to start maintenance on the monday.  Other than that we're just passing time.

Maintenance here we come!

So thursday was Paige's last appointment of delayed intensification. Yeah!!! Her counts were good, so she didn't need another transfusion.  Because the chemo she got that day affects their counts so severely, she'll need to go for blood work here in chilliwack on March 23 and 31st.  If her counts are low, we'll have to head out to children's for a blood transfusion.  Otherwise Paige will start maintenance on April 6th.  Her counts have to recover to a certain number before we start, so she'll need blood work on the 4th as well.  If it's a go, she'll have an LP and the same chemo she began with, vincristine.  You can see the schedule on the calendar link.

Paige is doing really well.  She's not sick at all.  I've been feeling well.  Every now and then, about once a week, I get nauseous.  Can't figure out why, but if I just take it easy that day it goes away.

Todd's b-day is tomorrow.  34!!!!! 

Another long day

So monday we were at children's for what we had hoped would be a quick appointment.  But as it turned out Paige's hemoglobin was 73 so she needed a blood transfusion.  And that needs to run over 4 hours.  So we were there to well past 5pm.  Paige was sick the whole time, kept puking and puking.  They wouldn't stop the transfusion to give her something for it, kinda ticked me off.  I don't know why she was so sick, she hasn't been sick before.  So I'm making sure to pre-medicate her from now on.  We got her chemo in abby yesterday, and will again today.  And then tomorrow we're back at childrens in case she needs another transfusion.  Then we have a break until the beginning of April when she starts maintenance, yeah!!! I so want to have a party or something to celebrate.  

Well Paige was starting to freak me and todd out with her two babies prediction.  So I "borrowed" and ultrasound machine, and it looks like one baby to me.  I got a face on view, the little guy/girl was waving around in there, limbs and all.  Sooooo coool.  Paige was one pissed off girl though.  After she saw there was only one baby she refused to look at the screen.  She was mad all the way home!  I'm glad I was able to tell her so she has some time to get used to it.  Although I suppose we would have found out next month anyways.  I guess there's a small chance I just couldn't see another baby, but I think that chance is pretty small. I only saw one fluid sac so it's pretty much confirmed.  So Paige has decided she wants a girl because "they're more fun".  Cute!  I really want to find out the sex, mainly because I don't want Paige to be mad on the baby's birthday.  But Todd doesn't want to know.  Maybe he'll just have to deal with it hey?

Todd's manager called and it looks like even when Todd is ready to return to work, he won't have a job.  They're doing major layoffs at his plant.  They've gone from running 10 lines to 2.  I'm actually kinda glad.  It's giving us some great family time. But if it goes on for too long he won't be able to take paternity leave, we just wouldn't be able to afford it.  But that's a while from now, we'll see what happens.

We're Good

Paige is feeling really well this week!  She doesn't seem to be sick at all during this phase.  We are so lucky! So on monday they will check her blood counts, and give her chemo, which takes about 30sec.  So once her counts are back, if they're okay we can head home.

So.........

Well Monday we didn't get home until 8pm. Apparently one of Paige's chemo's is very toxic to the kidneys, so she had to stay for 4 hours to receive IV hydration.  Then they kept testing her pee to make sure it was dilute.  Then we got the bad news that the cancer agency is abbotsford refused to administer Paige's chemo the next 3 days.  Apparently they don't do children.  Which we already knew, but the only reason I couldn't do it was I don't have the chemo course.  Which they do!  Ridiculous. Anyways they came up with the idea to contact our pediatrician, Dr. Cohen. She kindly offered to administer Paige's chemo for us in the pediatric day care unit at ARHCC.  Thank you Dr. Cohen!!!!  She's really gone out of her way to accommodate us, and we sure appreciate it!  So Paige had her chemo there on tues, wed, and will again today.  Childrens prepared the chemo for us, and sent it home with us on monday.  Next week we go to children's again on monday, and then abby on tues and wed, and then we might be back at children's on thursday cause they think she may require a blood transfusion.  So after next week, we're done!  And on to maintenance!  Our weekly treks to vancouver will be over!

Long Day

Okay, first of all it took us 2 hours and 45 min. to get here. Stupid snow! Then we find out that after Paige's LP, and her chemo that runs over an hour, she has to stay here and be hydrated for 4 hours! Might have been nice to know that ahead of time!  We could be here 6-7 hours today! Crazy!

Paige and I and the girls from Todd's side of the family went to see Annie yesterday.  Paige wasn't as interested as I thought she'd be.  She thought it was cool at first, but quickly lost interest. Guess she needs to grow up a bit more yet.

I'm feeling well. I'm 12 weeks now, and go for my first ultrasound on Apr. 20th.

Again

Well Paige spiked a temp again last night.  Luckily we were able to take her into abbotsford.  We left here at 9:30pm and got home at 1am.  They just did her blood work and gave her a dose of antibiotics.  The oncologist on call from children's arranged everything.  We have to go back tonight for a second dose. Her neutrophil count was 1.4!!!! Almost normal! Wow it sure went up fast! She's feeling great, and doesn't seem sick at all. She still has the same cough and runny nose, so maybe that's what her body is trying to fight?

HOME!

We are HOME!  Came home at 4pm today!

Sorry

Sorry we haven't posted in so long.  The wireless internet wasn't working at the hospital.  Paige has given me her cold.  Yeah! I had a nice break thursday.  Went home wednesday night.  Took me 4 hours to drive home in the snow.  Horrible highway conditions!  And I was wearing shorts and crocs cause that's all I had.  And it wasn't snowing here.  So I had to walk through a foot of snow to our front door in crocs!  My feet were very cold!

As of right now we're waiting for the big doc to decide what he's going to do with us.  They discontinued Paige's antibiotics yesterday.  And the plan was if she didn't develop a fever overnight and her counts went up, then she would go home today.  Her counts did go up, from .08 to .18, and she didn't develop a fever.  But apparently the big doc today is a little more conservative.  I really hope he sends us though, cause there's not really any reason for her to be here.  As the resident pointed out she's had 10 days of antibiotics, and it's pretty obvious she had a virus, so the antibiotics aren't really doing anything anyways.  So we're crossing our fingers that we'll be on our way home soon.

Wrong #

I posted the wrong local for our phone #. It's actually 7660. You can always ask the operator if you can't get through, and our cell phone may work, you never know. Also the best way to find us is to head down the hallway to the left of the gift shop. When you see the emergency sign hanging from the ceiling head down the hallway to your right. You'll see signs ahead for recovery/surgery etc. On your right you'll come to elevators with green doors. Take these up to the 3rd floor, and then head all the way down the hallway to your left. You'll end at our door.

Paige's counts were the same today. (.o7) Apparently it's common for them to drop when the steroids are stopped.

Due to the snow I'm heading home in the next hour. I have a Dr.'s appointment in chilliwack tomorrow, and I don't want to wait until the morning to attempt to drive out. It'll be nice to have a bit of a break. Todd will be spending the night with her.

Paige is well. She's in good spirits, and making the most of the mommy time. She's played "go fish" and "old maid" so many times, I could probably play them in my sleep!

I was incredibly ill this morning when I woke up. I really thought I was gonna puke. But once I forced myself to eat something I felt much better. I can't wait to sleep in my own bed. And have a nice long bath in my own bathroom!

Moved Again

Well the oncology ward is filling up, so we've been moved again.  They were so appreciative that we were okay with it.  Which is funny cause the new room is big and has it's own bathroom with a tub.  If Paige was sick I might have been a little more apprehensive (cause she's not on an oncology ward).  But she's feeling really well, and we're just waiting for counts so we don't need a nurse that specializes in chemo or anything.

Anyways we're now on 3F in room 1.  If you go up the elevators to the 3rd floor and turn left and around the corner and follow the signs to 3F you can find us.  To reach us on the floor you call the same 1 -888 number but the local is now 7760.  This ward is mainly metabolic, kidney, diabetes kinda stuff.  So because their kids aren't immune compromised they don't think they'll need to isolate Paige.  She doesn't seem very sick anyways.  I keep pointing out that her cough is from asthma, but I guess they need to be extra cautious with the oncology patients.

A little boy that we met during our first admission is the one who took our room.  He was diagnosed a few days after Paige, and his maternal grandparents are friends with my aunt and uncle, and my parents.  Small world huh?

Disappointing

Well Paige's counts dropped.  They are now .07, and I'm discouraged.  The Dr. says this is common when the patient has a viral infection.  The counts can fluctuate for quite awhile.  I asked about the reason for keeping her in, since technically her counts could have been this low at home and we wouldn't have known.  So it's partly to keep her on the antibiotics in case she does have a bacterial infection, and partly to protect her from catching something with no immune system to fight it off.  She said sometimes if it goes on a really long time, they'll stop the antibiotics and watch the child for awhile and if they don't get worse they'll send them home.  But she said last time they did this, the kid was back the next day with a fever.  So we are stuck here for now.  I shouldn't complain, I met one mom who has been here for 4 months, and she doesn't think they're going home until May at the earliest.  Yikes!  I asked about giving a certain drug that can increase your neutrophils.  She said they do use it with other cancers, but not with Leukemia.  Leukemia is cancer of the white blood cells, and we don't want to stimulate them to grow, cause we could stimulate the cancerous ones as well.  If she was really sick, and had no neutrophils then they might chance it.  But she's actually doing very well.  She seems in good spirits today.  She says she wishes she didn't have leukemia, cause then she could go home.  And she still thinks she's not pretty anymore because she has no hair.  Everyone keeps telling her how cute she looks, but she won't believe them.  But she's not really that upset about it.  Just matter of fact, funny girl.

Phone #

Sometimes my cell doesn't work so well in this room.  The phone # to our room is:

1-888-300-3088 LOCAL 7753

Goes right to our room. Doesn't cost us anything.

Baldy

Paige's count was .18 today.  Up a little bit from .13, but I'm still getting a little discouraged.  Then they tried to continue her steroids today, but I knew they were supposed to finish yesterday. So it was a big kerfuffle (?sp.).  They didn't want to just take my word for it, which I understand.  So they had to get her chart from the clinic.  I guess because we went in for our appointment on tuesday they had written down that she started the steroids on the tuesday, even though I told them I had started them on monday, as they had been ordered to start that day.  So it was all cleared up, thankfully!  The less time she's on them the better.  They decided to put her on respiratory isolation today because she has a nasty cough, and a runny nose still.  I had them start her puffers again, since she technically has asthma and the cough won't clear up without them.  The sucked some snot out of her nose and checked it, which all came back negative.  No RSV or influenza etc.  They let us go downstairs with a mask on Paige and we spent some time outside which was really nice.

Todd's parents were here last night.  They watched Paige for us while Todd and I headed to metrotown.  What a zoo!  But we picked up some games for Paige and some food for me.  It was a nice break.  Our friend Pam came today, and it was nice to see another face.

Paige's hair really started to fall out in huge clumps.  It looked really horrible, and was getting everywhere.  All over her clothes, bed, food etc.  She kept getting some in her mouth and eyes.  So we shaved her head today.  There wasn't actually that much hair left anyways.  Just a few long clumps from the top and her bangs. Funny most of the kids I've seen around here seem to lose the hair on the top of their head first.  But Paige lost the hair around the back and sides first.  Weird.  Well at least now she'll get some good use of out all the hats and bandanas that were bought for her.

Same

Paige's count was .13 today, same as yesterdays.  So I guess we're here for awhile. Her hair is falling out in large clumps now.  Won't be long till it's all gone I'm guessing.

Missing Home

Paige's count was up to .13 today, which is a nice increase.  At least it's going up.  The docs want it to be between .4 and .5 before she goes home.  So maybe monday?  Paige was in a much better mood today.  EA sports came and had a party in the play room.  They were giving away games and stuff, but they didn't have anything that they felt Paige would enjoy (I'm thinking who cares? I'll play it, hee hee). But they did give her a teddy bear.  And they had a caricature artist there who pencilled a picture of Paige, it's pretty cute.  I'll try to post a pic of it.  She really liked the skateboarding game she was playing. She figures since I won't let her have a skateboard, she can pretend with the game.  Her one fit today was because she wanted to go buy a skateboarding game for home.  Crazy!

I'm really sick of this place.  I'm tired of having to run to the lounge to use the bathroom.  And they can't seem to grasp the concept that having Paige use a bathroom down the hall isn't going to work.  It takes so long to get her pump out the door, that she's peed before we've even left the room. We brought her old potty in to see if that will work. I long for a couch, and a bathroom where I can linger as long as needed, without worrying about people waiting for me.  Hopefully only a few more days.

Correction

They are stopping the oral antibiotics that Paige usually takes on the weekend, because it could delay her counts recovering.  But they are carrying on with the IV antibiotics. Today was an okay day.  The steroids are giving her food cravings which is challenging in hospital.  But she had some happy periods today as well.

Here to Stay

Well Paige's blood cultures were negative.  So they're stopping the antibiotics.  But her neutrophil count dropped again to .05 so she has to stay until it improves.  Which could be a long time.  And I think we're stuck in this room that has no  bathroom and is about the size of my storage room at home.  I'm gonna ask about moving, but I worry that would upset Paige even more.  We'll see.

Horrible Day

Well today sucked!  Paige is at the end of her rope.  She just continually whines that she wants to go home, and I'm running out of answers for her, and patience! Physically she's fine. She hasn't had a fever again, and besides what seems to be a cold, she's the same as always.  I suppose the steroids aren't helping her attitude either.  So after a day spent listening to a broken record, Paige and I cuddled up in bed and were ready to drift off to sleep, when we're informed they're moving us to a room upstairs, because they're short a nurse.  Well this puts Paige over the edge.  She's screaming she doesn't want another poke, and the hallways too bright etc. etc. No amount of reassurance will do.  What bothers me the most is that they're not really do anything for her anyways.  Besides her vital signs every 4 hours, which I'm perfectly qualified to do. Oh well.  We're settled into our new room, and Paige is sleeping, kind of.  She keeps waking up crying, but she's not really awake!  I worry that she's traumatized by everything she's gone through. She doesn't seem to get any restful sleep anymore.  Hopefully the cultures will come back negative.  Although her neutrophil count on thursday was practically zero.  They may keep her until it improves. Guess we'll just wait and see.

Back Again

So Paige seemed okay this morning when she woke up. Todd said she was running around the first few hours, and then just said she wanted to lay down while she watched a movie.  By the time I got up she kept telling me she wasn't feeling well, so I took her temperature.  39.4!  Eeeek!  So we had to rush her to the oncology clinic.  Because of her VAD (central line) they have to be very careful about infection.  They treat with antibiotics in the hopes of avoiding an infection in her VAD, which would be very bad!  They said her neutrophil count was .62 yesterday, which is a little low.  So when we arrived they took blood cultures and checked her counts again.  The Dr. came and examined her.  Her neutrophils came back at .12! Eeeek again!  So that count combined with the fever meant she had to be admitted at least until the cultures come back negative.  If the cultures come back negative and her counts have recovered, we could be going home on saturday. It's weird how it suddenly came up. She was fine yesterday!  Maybe I did have the stomach flu, she caught it, and her response is more severe because of her compromised immune system? Who knows?  What sucks is that I had to cancel my appointment with my psychiatrist for today.  Hopefully that can be rescheduled.  I also had an appointment with my Dr. to fill out forms for long term disability.  I had already rescheduled the appointment twice because of the clinic fiasco on monday, and now had to cancel it!  So frustrating!  I know it's not a big deal in the grand scheme of things.  But I like to have all my ducks in a row, and now I feel like I have all this stuff hanging over my head, stuff I need to get done soon! Oh well, one day at a time.  We are in the same room as when we were initially admitted here.  Funny eh?  And the nurse that admitted us in the clinic was our favourite nurse from that first stay here.  So we're in good hands.

ZZZZZZZZZZZZ!

Well Monday was a no go.  I was terribly ill and couldn't get out of bed.  Todd was supposed to work that night, and didn't think Paige would be co-operative and go with just him.  So we cancelled our appointment and asked to reschedule.  But I guess they didn't get the message, so when they called they were extremely rude!  Even after I explained what had happened the lady was giving me attitude.  She was telling us that the chemo and blood were already prepared.  Which I know isn't true because they check her counts before deciding to give her a transfusion, and they wouldn't have had a sample to cross match.  Anyways it put me in a state. I understand that it's frustrating for them when they have "no shows" but it was an honest communication mishap, and shouldn't we be given a little slack? I mean these people should understand the stress we're under! I would have thought they'd be a little gentler when dealing with parents of children with cancer.  But I guess they're only human.

So we went to our appointment on tuesday.  It went okay.  Paige's counts were fine and she didn't need a transfusion which was surprising.  Paige is having a really hard time with the appointments now though.  She cries every time I wake her up, and she shakes in the car the whole way there.  She tells me she's so scared!  This time she screamed while they accessed her, that she didn't want a poke.  She's the opposite of other children.  Usually they do that in the beginning and then they get used to it.  But Paige was great in the beginning, it's now that's she's lost it.  The nurse said she's probably just sick of it now!  I can understand that!

So she has to get blood work done in a week, because the one chemo (doxo) affects their blood counts so much.  They just need to keep an eye on them.  But I can do that here in chilliwack.  If she ends up needing a transfusion then we'll have to head to childrens for that.  Before she starts the next course of this phase in March she'll need to have blood work done as well.  They won't start if her counts are too low.  Then after those two weeks we're on maintenance, yeah!

Paige threw up this morning, which is why I'm blogging so early.  She's watching treehouse now.  Hopefully she'll go back to bed soon.

And on it goes

Nothing new around here.  Paige appointment last monday went fine.  Her counts were good so it was a short appointment as one chemo takes a minute and the other one just a few minutes.  We're back again tomorrow for the same.  I think she may need a blood transfusion this time though.  She's looking a little pale, and last night she had a nose bleed that didn't want to stop, so I'm wondering if her platelets are low (the cells that clot so you don't bleed). We'll just have to see tomorrow.  After that appointment she has a break, and then she has chemo four days in a row for two weeks.  She's been responding fine to this round so far.  She hasn't been very sick, maybe once she puked.  She has plenty of energy! Her hair doesn't seem to be falling out any faster either.  Who knows?

I'm doing a bit better.  Still very tired, but I don't know if it's the depression or the pregnancy.  I see the psychiatrist on wednesday.

Todd's a little stressed about work.  There's talk of layoffs, and although he's senior enough that he doesn't think he'll be laid off, he would end up at the bottom of the totem pole again, which would mean he'd actually have to do some work (his words not mine!).  They pick which line they want to work by seniority, so of course the less senior guys end up working the harder lines. We'll just have to see what happens.

Last Phase

Paige's appointment went well on monday.  She sailed through her LP (she always amazes the Dr.'s and Nurses). She received her two IV chemo's and then we were on our way home.  She also started the steroids again, for one week only, although it's a much higher dose this time.  On friday we went for the 2 shots to her legs.  Paige was really upset when I woke her up, which was unusual for her, so it was a bit of an off day from the beginning.  But after the shots she was fine. We had to stay at the hospital for 3 hours in case she had a reaction, but she kept busy playing with some other kids, and volunteers. We're back on monday next week and the week after for the IV chemo's, and another week of steroids after a week break. She doesn't seem to be reacting to them this time, perhaps because she isn't on them as long.  Her hunger has increased, but her behaviour has stayed the same.  Her next two appointments aren't "count dependant", so we don't have to wait for the blood work results before pharmacy can make up the chemo, it should be ready before we get there.  The meds she's on this time are kinda scary.  She's at risk for pancreatitis, and heart damage.  Apparently there is no way to avoid the heart damage, but it usually doesn't affect heart function.  But they keep and eye on it anyways. This new chemo can really affect her blood counts, and they say she'll likely need a blood transfusion at some point.

We registered Paige for Kindergarten the other day.  How scary how fast she's growing up!  The lady was wondering if there's anything they have to do about Paige's "health issue".  Seems funny that there isn't!  According to her Dr.s we don't even have to worry about colds and flu's as much anymore.  The one thing they worry about is chicken pox, but she's been vaccinated, so there's no worry for us. No offense to anyone out there, but I am so happy I am not one of those anti vaccination people!  Paige would have been in much more danger if she hadn't been vaccinated.  Can you imagine if she caught whooping cough or mumps or measels, with no functioning immune system?  And you can't vaccinate now, cause she doesn't have an immune system to respond to the vaccine, so it wouldn't work anyways!  You never know I guess.

We're going to have to do some reorganization this spring/summer to fit our growing family.  We only have 2 bedrooms upstairs, and Paige isn't ready to sleep in the basement herself.  Since there's only 2 bedrooms downstairs as well, we plan to move our bedroom into the rec room down there, and then Paige into one bedroom, and the baby into the other.  Then we'll make the upstairs bedrooms an office and a playroom.  The downstairs bathroom isn't very functional so we'll have to renovate that, we'd like to have a shower added (it's only a 2 piece).  Todd cringe's at the money, but we have the rest of our lives to get out of debt!  We need to live in the present!

Paige is telling everyone we're having twins. She's decided she wants a brother and a sister!  I've told her it's mean to wish such on her mother!  Hopefully she's not predicting!  I somewhat wish we hadn't told her we were pregnant, she asks me every day if the Dr. can take the babies out of my stomach now, very funny!  Perhaps I should show her some pictures in my textbook so she understands why the baby can't come out yet.  She insisted on buying the "babies" socks the other day, and of course she wanted one pair for the boy and one for the girl. Oh dear! Hope she's not disappointed!

All about Janis

Well this post is all about me!  Paige is doing great! She's set to start her next phase of treatment on monday.

I, however, am experiencing some issues.  Many of you know I have struggled with depression over the years.  The stress of fertility treatments, Paige being diagnosed, and the pregnancy (although a blessing) has finally caught up to me!  I've found it harder and harder to cope with the littlest things in the last few weeks.  Just getting Paige to bed is like running a mental marathon for me.  I am so tired, I sleep more than I'm awake, and the fatigue is unbearable.  So I've been referred to the Reproductive Mental Health program through BC Women's hospital in Vancouver.  I saw a psychiatrist today, who mostly just collected data on my history of depression and how I'm doing now.  Then she discussed my meds in relation to safety during pregnancy, and how best to treat my symptoms. I will be seeing her once a month during the pregnancy, and for up to a year after delivery.  I had severe post partum depression after Paige was born, so I'm at increased risk this time around.  Todd and I talked previously about him taking a leave from work during this next phase of treatment for Paige, and I think we'll explore that option again, so he can help while I try to get back on track again.

So keep us in your thoughts and prayers.  I know God doesn't give us more than we can handle!

On Break

Paige's appointment on Monday went well.  She had an echo (ultrasound of the heart) done because one of the drugs next month can affect her heart and they need a baseline.  Spoke with her oncologist, and the AraC (the four days in a row chemo) can be given at the cancer agency in abbotsford, so he's going to arrange that for us.  Her counts were really good.  Her Neutrophils were >2, which I haven't seen for a long time!

Many of you have heard that we're expecting a baby in September.  We're excited and anxious at the same time.  I'm just over a month along, and am already feeling quite ill and lethargic. Doesn't spell good news for the future.  But I'll take it one day at a time.  It's a blessing either way!  Just goes to show, when you're counting on it to take a long time to get pregnant, is exactly when it doesn't.  Hee Hee.

Treatment Calendar

A few people have been asking about Paige's treatment schedule for February and March.  So I've created a calendar and posted a link to it (click on "treatment calendar" under "links" to the left). I'll update it once I know for sure if Paige starts her next phase on February 2nd.  I don't want to enter anything past March in case it's delayed like last time.  After creating that calendar I feel a little better about delayed intensification, her next phase.  It doesn't seem so bad once I have it all laid out in front of me. And we'll see who wins the war on the one drug Cytarabine.  I would have to drive to BCCH 4 days in a row if they won't let me administer it at home.  I'm pretty stubborn though, so we'll just have to wait and see.

Better

Yesterday was a good day.  Paige was tired, but no puking!   She seems to be back to her old self again today.  We're back at BCCH on monday, but she doesn't have an LP so I'm hoping she won't get sick again, since it's 2 chemo's instead of 3.  We'll see. Paige is spending saturday night at Todd's parents.  It'll be nice to have a night "off".  We'll see how she  does.  She's still very clingy with me, but she's also very close to her grandparents so I think everything will go alright.

Worst Day Ever

Well all of a sudden, the chemo caught up with Paige yesterday.  She threw up during the night, and all through the day.  She actually came to bed with me in the afternoon for a nap, and ended up throwing up all over my back! Last night was horrible.  She woke up puking and crying and was just in a state.  In desperation i gave her a gravol suppository, and she was really mad I put something "in her bum".  But i just didn't know what else to do. I had called our primary nurse during the day, and she had a doctor call in a refill for our Zofran (strong gravol type med).  We were able to get quick dissolve tablets instead of liquid which has worked out really well.  I even managed to give her one while she was asleep.  I am getting more and more terrified of february, as we get closer.  If she's this bad now, what will it be like then? Today she's in good spirits.  She's thrown up once this morning, and is complaining about her tummy still. She's not moving much, just hanging out on the couch, but she's happy.  It's more stressful, because she doesn't have that reflex that cause you to run to the bathroom or grab the bucket when you feel you're going to puke.  It always ends up in her lap, on the floor, or in her bed.  Makes for a lot of work.

A little sick

Well Paige had another round of chemo on thursday.  She had an LP and the same two IV chemo's she's been getting.  It seemed to hit her a bit harder this time.  I wonder if it's the spinal chemo that causes her to be sick?  She puked that night and again the next morning.  But then the rest of the day she was fine.  Running around as usual.  It's so sad to see her sick, and complaining about her tummy.  But she bounces back real quick.  Much more resilient than your average adult!  She has her last appointment for this phase on the 19th.  And then we have a break until February 2nd.  Then, if her counts are okay, she starts delayed intensification.  6 weeks of intense treatment!  But then we're on to maintenance and our lives should return to normal (whatever that is!). They checked her for a bladder infection, because she was unable to make it to the potty for over a week.  But so far she's clear.  I ask her if she's gonna be the first child to start kindergarten that's not potty trained!  But she seems to be back on track again, as of today.  She seems a little constipated so I've started her on the laxative they gave us early on.  Maybe that will help.

The whole family was sick after new years.  I got hit new years day.  Felt like I had the worst hangover ever, which would have been fine, if I had been drinking!  Stayed in bed for over two days!  Then Todd started to feel ill.  He's just getting better now.  In time to go back to work after his extended christmas vacation, poor guy!  So far Paige has escaped catching the bug, hopefully it stays that way!