October 14, 2008

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.
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1 comment:

Anonymous said...

oh what hard days. i keep thinking that it would be so cool if those of us who have extra strength that we don't need right now could just pluck it off and send it to you. but you are keeping strong i know because you make such good decisions. thankyou for keeping us up to date on paige. it's really good of you. and we'll keep sending love
uncle johnny and auntie tina

October 16, 2008 at 7:32 AM

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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.