February 7, 2009

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!
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1 comment:

Andrea Loge said...

Sounds like you guys are doing really well I am so happy both you and Paige (and Todd of course) have a little someone to shop for. My thoughts are with you everyday during this phase of Paige's treatment. I registered Isaac in Kindergarten last week as well to be honest I can't wait, LOL!

February 9, 2009 at 11:48 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.