On to Interim Maintenance

Paige and me went to BC Biolab yesterday to have her bloodwork done.  Her platelets have to be >75 and her neutrophils have to be >.75 to start chemo tomorrow.  So they had us check here, and gave me a number to call to get the results, so we don't drive out and then find out she can't start.  If her counts are too low they'll wait a week and then check again.  They poked her twice, once in each arm, but couldn't find the vein.  I've heard that the freezing cream can make it harder.  Paige was freaking out, although afterwards she told me she couldn't feel it.  So I asked her why she was crying then, was she scared?  Yep!  But During the whole thing I suddenly had an idea to have her count the spots on the ladybugs on my watch, and then I had her count the numbers etc.  It was a great distraction and she stopped crying right away. I think I'll take one of her search and find books with us tomorrow.  In the end they had to prick her finger and collect the blood that way.  Yuck!  So of course during the procedure I promised she could have this tea set she keeps asking for.  So we're off to Toys r us today to find it, cause none of the stores in Chilliwack have it.

So tomorrow she starts chemo again. I'll call in the morning to get her counts before we leave.  I hope they're good. She goes every 10 days.  I'm going to see if they can give me a prescription for flu shots for all 3 of us, then I can just give them here at home.

The christmas decorations are all up.  I'll post some pics when I get around to it.

Feeling Down

Things have been going well.  Paige is back to her old self and enjoying this break from treatment.  She hasn't had any more fevers, although she still has a nasty cough.  She has so much energy!  We've been visiting friends with kids and she's enjoying the socialization.  I was a little disappointed that Paige wouldn't be able to attend preschool when she's feeling well.  She's missing so much out of life!  I just want her to experience as much as possible when she's feeling well.  I'm a little upset that we couldn't find some way make it work, but it's all about the money.  I could probably afford the $80 a month to hold her spot, but it just seems like a waste of money!  She starts chemo again Dec. 1st so she may start feeling ill again.  I thought I was handling the school thing pretty well, until we went to dance class today.  I asked the owner what she wanted me to pay her. I said Paige may be able to come until January, but then would be absent for February and March.  She said that Paige can't really miss those months because that's when they start working on their year end performance.  She doesn't want Paige to get behind and then she'll feel bad when she can't dance like the rest of the class.  Which I totally understand!  She said Paige could continue to come when she's feeling well, till December, and I don't have to pay.  Then in January she suggested we do a short session, the six week one's they have a couple of times a year.  So I guess that's what we'll do.

I'm not upset with the preschool or dance studio.  I think I'm upset that Paige has to miss out on all of these things on top of having to go through treatment for cancer.  Honestly it's just not fair! She should have the opportunity to enrich her life whenever possible!  It's very frustrating.  But it's just a fact of life.  I guess I wasn't really prepared for what this two years of treatment would mean!  I thought about the commuting to children's and the side effects of treatment etc.  But I never really considered how disruptive this would be for Paige's academic and social development. It's hard to because Paige's best friend Lily is in the same class, and I really wanted to keep them together.  We saw another girl from Paige's preschool class at the studio today.  Apparently there's a new Paige in the class, but she told her Mom she likes the other Paige better, and misses her!  So sweet!  It's been so hard for Paige to make friends, I'm sad that just when she started to blossom, she has to be excluded.  She doesn't really know any different, but I know what she's missing out on.

So just another upset to get used to.  I suppose I should get used to the idea that Paige having leukemia isn't just going to fit into our life easily.  I'm glad that it's just preschool she's missing, and not kindergarten.  But at the same time, if she was in public school she could go whenever she was feeling well.  But I guess then she'd be more behind than she will from just missing preschool.  So perhaps there is a silver lining to this cloud.  At least she got in one year of preschool.  I'm so glad that I didn't listen to Todd and started her with the plan of two years of preschool instead of the one.  She wouldn't have gotten any!

Well I'm just gonna concentrate on the holidays.  We're decorating the tree today.  Paige is super excited about this christmas, and it's so nice to see her getting into the spirit of things!  We've decorated her gingerbread house already, and I have to say she did a wonderful job!

Now We Wait

So we went in today and they gave Paige another dose of antibiotics.  Dr. Davis decided that the two doses were enough, and we'll just wait for the results of the blood culture which should come back late saturday or sunday.  He doesn't feel it's going to be positive.  They figure the fever was either from her cold (which is now gone, good fever!), or maybe a gastro since she started vomiting last night on the way home, and has a touch diarrhea.  He said he's not a big believer in giving antibiotics for fevers when the child otherwise feels well, but that her white blood cell count was quite high, so in this case he would have given them anyways.  Hopefully that's the end of this and we can go on enjoying our "break".

Home Soon

Well they are going to give Paige an antibiotic, which running now.  Then we'll go home, and come to the clinic tomorrow for another dose.  They'll basically just wait for the blood culture to come back which takes about 2 days. I'll update you tomorrow.  Hope I get some sleep tonight!

p.s. I just have to point out that our pediatricians in abbotsford could have handled this!

They Warned Us!

Yes the Dr.'s warned us that no kid with leukemia avoids being admitted with a fever.  Paige spiked a fever tonight around 4:30pm.  It took awhile to reach the high it needs to be for me to call the oncologist.  But around 6:00 pm it was 38.5 so call I did.  We are currently in emergency at BCCH awaiting her bloodwork results.  If her counts are still okay they will probably give her an antibiotic and send us home, and we'll follow up with the clinic tomorrow.  (honestly if they're going to make us drive out again, why not just give us a bed for the night?)  I had a good laugh.  When I called the Dr. I asked if we could just deal with this locally.  He said only the nurses at surrey and BCCH know how to access a VAD properly. Which made me laugh, since I had to access the odd one when I worked pediatrics.  And then the nurse we had tonight admitted she hadn't done it in a really long time.  But she had recently done the inservice and she had someone from the IV team come and help.  But I still had to point some things out to both of them.  Very funny! And they won't let me do this at home!

Otherwise things have been going extremely well.  We were shopping today and Paige actually got out of the cart and ran around the store! Unbelievable.  Then we end up here, man life is funny sometimes. Just when I think things are calming down!

Todd's work did a "collection" to help us out, and his company matched all the money raised!  It's a large chunk of change, and so appreciated!  Everyone's been helping so much!  We are truly blessed to have such wonderful friends, family, and co-workers.

A Break

Paige had her last LP yesterday.  They said there were a few more white cells in her CSF, but sometimes that happens with irritation from the frequent LP's. She's been having some blood in her stools, but there doesn't seem to be anything going on with her stomach, and she's not constipated, so they're not concerned.  Perhaps she has a fissure or something we can't see.  She has a cold with cough right now, which seems to be taking forever to go away.  Her cough isn't really improving.  I'm giving her the puffers we're supposed to use when she has a cold because of her asthma, but they don't seem to be helping.  I guess it makes sense that it will take her longer to get rid of a cold.  But her blood counts are really good. Who knows?

She has a break now until Dec. 1st.  We have to get some bloodwork done on the 29th to make sure her counts are high enough to start the next phase of treatment.  I talked with Dr. Davis, our oncologist, about the one med paige will need IV every day for four days a week during her next stage.  I had asked a nurse if she thought we'd be able to do it at home, but she said you have to have your chemo course to give the drug.  But when I brought it up to Dr. Davis, he didn't think it would be a problem.  We can go to BCCH the first day, and then they can leave her VAD accessed for the next 3 days.  He said sometimes they send you home with the chemo from their pharmacy, but that the abbotsford hospital pharmacy should be able to make it too.  If it becomes a problem maybe we can give it at the Cancer agency in abbotsford.  I'm sure Dr. Davis will work something out.  Apparently things have changed a lot and they're a little more picky about this stuff.  But I am not driving out there 4 days in a row, when I'm perfectly capable of administering that drug myself.

Paige won't be returning to preschool.  She could return now, but she'd probably have to leave again in february.  We don't really want to pay the monthly fee if she's not attending.  So they're going to give her spot away.  But I'm hoping to bring her to dance class tomorrow!

Ho Hum

Life around the Van Egdom household is boring.  After a few days of severe behaviour issues that had me pulling out my hair, Paige has turned a corner.  If it wasn't for all the hair falling out, you wouldn't even know she was sick.  She's losing copious amounts of hair, but you can't really tell.  She still looks like she has lots. Crazy!

We go to BCCH monday for her last LP this phase.  Then she has a break, and starts the next phase in Dec.  We're going to try and put her back in her dance class next week.  She says she doesn't want to, but I don't think it's cause she doesn't feel well.  Maybe she can do a few days of school.

We've been visiting a bit this week, and she's actually done really well.  We were at our friend Kristy's house visiting with her and her sister Kathy and their kids.  Paige actually played pretty well with the kids, which is good.  She's not usually good at socializing with others.  Then on friday we went to see a friend from preschool and dance class, and she had a good playdate then too.  It's nice to see her full of energy.  I dread when she changes again.

She has developed an annoying habit, which honestly started before she was sick, but has gotten much worse.  She'll want something, but will only point, grunt, and whine.  She won't use her words.  And no matter how hard you try, she just continues and gets really frustrated that your not understanding her.  If she didn't have such good language skills, I would take her to speech therapy or something.  Yesterday I actually wondered if she might be slightly autistic?  But I'm hoping I'm overreacting.  I do think it might be a symptom from when she wasn't feeling well, but we didn't know it (before she was diagnosed).  The other night she just pointed to her PJ drawer, but wouldn't tell me which one's she wanted to wear.  Just kept whining, grunting and pointing. So I left the room for about half and hour while she cried on and off.  Finally I went in and held her and she finally said "plaid" as in the plaid nightgown. All that work for one word, arghhh!

Having Todd back at work isn't as bad as I thought.  It forces me to go out on the days that he's working.  And to actually do some of the house work. Although I'm not getting much of that done either. It amazes me how much mess one 4 year old can make.

I'm going to slowly start putting up the christmas decorations next week.  Todd has a rule "no decorating until december!" or at least till the last weekend of november.  But it's so much work to put all the stuff out, that i'd like to enjoy it for more than a month.  Paige and I will start our christmas baking as well.  She loves to "help". Todd's started putting up the outdoor lights (not allowed to turn them on yet though).  Paige is so excited.  She really loves christmas.  Today she was asking to go back to walmart to look at the christmas inflatables again. So cute!

I had very good intentions of sending out a thank you card to everyone that has helped us, but I'm afraid I've gotten behind, and I have no idea who I've thanked and who I haven't!  So if you haven't received a card it's NOT because I didn't appreciate your thoughtfulness!  I'm just a little unorganized right now!

Quite a few people have been selling silicone bracelets for us, and we thank you for all your hard work!  We also have lanyards and pins if people think they could sell them.  Just let me know.

Prayer Request

For all of you praying for Paige, I have a request to add a little girl named Kourtney to your prayers.  She is the daughter of one of my co-workers.  She has a serious skin disorder and is currently hospitalized at BCCH.  She has to endure very painful dressing changes.  Please pray for healing for her, and strength for her family.

Paige is doing really well.  Her grumpy times are few and far between.  She really seems like the old Paige.  She doesn't really seem sick at all. We're seeing more and more scalp every day, and her pillow looks furry every morning. But she's in good spirits.  She's watching Disney movies one after the other, and is a little less attached to me these days which is nice.

Todd goes back to work on monday.  I'm not looking forward to this. But it must be done.

Day One - Consolidation

So Paige had her LP today.  Went really well.  I got to stay in the room with her which was really nice.  Something was going on with their lab though.  They wouldn't start until her counts were back and that took until after 12! And our appointment was at 8:30.  Oh well, it's just time.  They're happy with Paige progress.  Her last bone marrow was "as good as it can be" so we're really happy!

Paige's hair has really started to fall out.  We've noticed it keeps appearing thinner and thinner, especially when we wash it.  Well today the back of her pj's was covered in hair that had fallen out.  I've never even seen a dog shed that much!  Guess we jinxed ourselves by commenting on how it wasn't falling out.

We had a great halloween.  We had been worried because Paige had been spending all her time in bed, we thought her muscles would start to atrophy.  It took a couple of hours but she finally put on her costume and then there was no stopping her!  She was dressed as Madeline (see pic in my last post).  She even had the proper shoes.  But in all the craziness of the last month I forgot to buy white gloves (which madeline wears).  Paige was very quick to point this out!  It was so cute.  So daddy dug through the closet and found black gloves which Paige decided was an okay substitute.

We didn't think she'd last that long trick or treating, but she surprised us.  I put her in her stroller and wheeled her up to each house and then carried her up to the stairs.  She almost did our whole neighborhood.  Near the end I was leaving her in the stroller and holding the bag myself cause my back was killing me!  I was in rough shape by the time we got home.  But it was worth it.  Halloween is one of my favourite holidays, and I'm so glad Paige was feeling well enough to participate.  (I'll admit I also like it that she doesn't care much for chocolate or candy, more for mommy!)

She's already asking to put up the christmas tree!  I'm hoping she's feeling well this christmas!