February 23, 2009

Baldy

Paige's count was .18 today.  Up a little bit from .13, but I'm still getting a little discouraged.  Then they tried to continue her steroids today, but I knew they were supposed to finish yesterday. So it was a big kerfuffle (?sp.).  They didn't want to just take my word for it, which I understand.  So they had to get her chart from the clinic.  I guess because we went in for our appointment on tuesday they had written down that she started the steroids on the tuesday, even though I told them I had started them on monday, as they had been ordered to start that day.  So it was all cleared up, thankfully!  The less time she's on them the better.  They decided to put her on respiratory isolation today because she has a nasty cough, and a runny nose still.  I had them start her puffers again, since she technically has asthma and the cough won't clear up without them.  The sucked some snot out of her nose and checked it, which all came back negative.  No RSV or influenza etc.  They let us go downstairs with a mask on Paige and we spent some time outside which was really nice.

Todd's parents were here last night.  They watched Paige for us while Todd and I headed to metrotown.  What a zoo!  But we picked up some games for Paige and some food for me.  It was a nice break.  Our friend Pam came today, and it was nice to see another face.

Paige's hair really started to fall out in huge clumps.  It looked really horrible, and was getting everywhere.  All over her clothes, bed, food etc.  She kept getting some in her mouth and eyes.  So we shaved her head today.  There wasn't actually that much hair left anyways.  Just a few long clumps from the top and her bangs. Funny most of the kids I've seen around here seem to lose the hair on the top of their head first.  But Paige lost the hair around the back and sides first.  Weird.  Well at least now she'll get some good use of out all the hats and bandanas that were bought for her.


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1 comment:

Jess said...

Janis, I have been reading for a while and keeping up with you this way, I have also kept you in my prayers.
I just had to say I think she is a cutie with her hair gone!

February 23, 2009 at 6:33 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.