October 7, 2008

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!
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3 comments:

Anonymous said...

Hi Guys! Glad to hear Paige is going home tomorrow. I will call you when you're home to bring some meals and goodies. You're in our thoughts and prayers all the time! Thanks for updating with pictures...Love, Jen

October 7, 2008 at 4:20 PM
Anonymous said...

Fingers crossed tomorrow you get to go home.

October 7, 2008 at 5:05 PM
Anonymous said...

I'm so thrilled for you guys that Paige should be able to go home tomorrow. That is awesome! We're still praying for Paige! ~Andrea, Brent, Cole & Dylan

October 7, 2008 at 9:24 PM

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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.