April 30, 2009

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?
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April 19, 2009

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!
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April 15, 2009

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!
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April 9, 2009

Still Delayed

Paige's counts actually went down, so we were not at childrens yesterday.  She's now scheduled to start on the 17th.
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April 7, 2009

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!
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April 6, 2009

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.
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Leukemia

Leukemia is a malignant disease (cancer) of the bone marrow and blood. It is characterized by the uncontrolled accumulation of blood cells.

ALL starts with a change to a single cell in the bone marrow. Scientists are studying the exact genetic changes that cause a normal cell to become an ALL cell. The goal of treatment for ALL is to cure the disease. Children with ALL are likely to be cured of their disease. There are two parts of treatment for ALL, called induction therapy and post-induction therapy. The aim of induction therapy is to:
  • Kill as many ALL cells as possible
  • Get blood counts back to normal
  • And to get rid of all signs of the disease for an extended period of time.

This is called a remission.Patients with ALL often have leukemic cells in the lining of the spinal cord and brain. The procedure used to check the spinal fluid for leukemic cells is called a spinal tap. The cells cannot always be found in an exam of the spinal fluid.

To prevent leukemia in the central nervous system (CNS) leukemia, all patients who are in remission have the lining of the spinal cord and brain treated. Parts of the body that aren't easily reached with chemotherapy given by mouth or IV - such as the lining of the spinal cord and brain - are treated by injection into the spinal fluid.

More treatment is needed even after a patient with ALL is in remission. This is called post-induction therapy. It is given in cycles for two to three years. Post-induction therapy is given because some ALL cells remain that are not found by common blood or marrow tests. For most people, the postremission therapy drugs used are not the same drugs used during induction therapy. The doctor considers many things to decide the kind of post-induction therapy a patient needs, such as:

  • The patient's response to induction therapy.
  • Whether the patient has certain chromosomal abnormalities.
Visit www.lls.org/canada to read more, you can also order a free pamphlet if you like.

How it all Began

Well Paige had been complaining about pain in her leg for a couple of weeks.  Took her to the Dr., who decided it was most likely growing pains.  But later that week she could no longer walk, and was hanging onto furniture to support her weight. Took her to emergency. Many x-rays later, we were told that there was a spot of translucency on her right femur (thigh bone).  We would need to go to the orthopedic clinic at BC Children's Hospital to have it diagnosed.  During this visit to emerg they did blood work that came back with "odd" results.  But the pediatrician spoke with the hematologist at BCCH and more blood work was done, which I was told came out fine.

So we went to our visit with the orthopedic Dr. at the clinic.  Paige had a CT of her legs.  On cross section your bone looks like a donut (there's bone marrow in the middle).  At a particular spot on Paige's femur it looks like a bite has been taken out of the donut.  But they decided they weren't worried enough to open her up to see what it was. So we went home with a prescription and a huge load of frustration.

Paige didn't get any worse, but she didn't get better either.  She seemed to always be hurting herself.  You could barely touch her and she would cry in pain.  She wouldn't come to me anymore when she was hurt, and would run away saying "don't touch me".  I was very concerned.  She was covered in bruises, and it didn't seem that she was bumping into things that often. She bumped her elbow one day, cried, and then carried on playing.  But that night she screamed about the pain in her elbow until I gave her some Ibuprofen. I knew something was wrong, but I didn't know what to do.  We had already seen the specialist.

Luckily the orthopedic clinic called to see how she was doing.  They thought the pain would clear up on it's own.  When I told them she was still symptomatic, they said I should bring her back.

So back to the clinic we went. This time they did a very thorough exam, but Paige screamed in pain all of a sudden during the exam, when it had been okay previously.  So the did some repeat x-rays looking at her knee closely.  The Dr. said that the bone in her knee (basically the end of her femur) looked "moth eaten".  He was concerned that she was so pale and decided to send her for blood work to see if she had a bone infection.

Well that would have been a blessing.  As it was the lab began calling him, as they were very concerned about what they were seeing.  Her platelets (the cells in your blood that clot) and her hemoglobin (carries oxygen on your red blood cell) were very low.  The orthopedic Dr. called the hematology/oncology Dr. to come up and see us. 

Immediately we were given the devastating news that it was leukemia.  He assured us it was entirely curable, it would just be a long road.

The purpose of this blog is to give all our family, friends, and co-workers a place to get up to date info on what's happening and how we are doing. I have my laptop here and will be checking.  So far my email doesn't work, so it is best to facebook me, call me on my cell, or comment on the blog.