November 20, 2008

They Warned Us!

Yes the Dr.'s warned us that no kid with leukemia avoids being admitted with a fever.  Paige spiked a fever tonight around 4:30pm.  It took awhile to reach the high it needs to be for me to call the oncologist.  But around 6:00 pm it was 38.5 so call I did.  We are currently in emergency at BCCH awaiting her bloodwork results.  If her counts are still okay they will probably give her an antibiotic and send us home, and we'll follow up with the clinic tomorrow.  (honestly if they're going to make us drive out again, why not just give us a bed for the night?)  I had a good laugh.  When I called the Dr. I asked if we could just deal with this locally.  He said only the nurses at surrey and BCCH know how to access a VAD properly. Which made me laugh, since I had to access the odd one when I worked pediatrics.  And then the nurse we had tonight admitted she hadn't done it in a really long time.  But she had recently done the inservice and she had someone from the IV team come and help.  But I still had to point some things out to both of them.  Very funny! And they won't let me do this at home!

Otherwise things have been going extremely well.  We were shopping today and Paige actually got out of the cart and ran around the store! Unbelievable.  Then we end up here, man life is funny sometimes. Just when I think things are calming down!

Todd's work did a "collection" to help us out, and his company matched all the money raised!  It's a large chunk of change, and so appreciated!  Everyone's been helping so much!  We are truly blessed to have such wonderful friends, family, and co-workers.
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1 comment:

The Kujawas said...

Sometimes you just have to laugh when you think of the irony of it all. I manage Kourtney best at home, really right now she should be admitted but I am set up better here than at home.

Right now....I would hate to give you anything or paige. Kourtney is MRSA positve. I just think being around her is not the best thing for little Paige. You should start asking about using Medihoney for Paige's VAD, it is being used widely in Toronto and UK for prophylatic infections with lines. I am amaze how well it works.The doctors will think your crazy but the infectios disease doctors at Children's have been very encouraging with my use of the MEDIHONEY.

November 24, 2008 at 9:12 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.