October 27, 2008

Last Biopsy

Paige had her last bone marrow biopsy, yeah! So now she just has frequent LP's to make sure the cancer is staying out of her CNS.  I'm allowed to stay in the room for those, so I'm really happy.

I was really stressed out over the SMH vs. BCCH thing.  I just find that my mind can only handle so much at a time.  I still think at least once a day, "is this really happening to us, to Paige?".  Even though it is a somewhat longer drive I'm just so much more relaxed at children's. We saw a bunch of nurses we know today.  And all the dr'.s in her biopsy we knew.  I've developed a report with these people, and I'm just not ready to start again with a whole new set of staff.  I guess with my depression I can only cope with so much.  And these people are helping me cope.  They put my mind at ease. And when we're there I can relax cause of feel like i know them, and can therefore trust them with my baby.

So we spoke with our primary nurse alison today and she mentioned that dr. davis (our oncologist) wanted to talk to us, and make things as least stressful as possible.  I get the feeling I'm not the only person who has felt a little "stalked" by them.  Exuberance is great! And I'm happy they love their job, but I don't like to feel like they're working on commission and need me to come to their program.  Which is how I was feeling.  Dr. Davis reassured me that I could continue to come to BCCH, and if later I decided I wanted to do some or all of paige's remaining treatment at SMH that would still be an option for me.  I guess I'm somewhat attached because these people helped me navigate the shock and disbelief we went through when Paige was diagnosed.  They're not perfect, they just happen to be the one's who were there.  I guess I'm rambling because I still feel a little guilty about SMH, that they're going to think I didn't like them or something.  Boy can I be crazy or what!  I just couldn't handle having directions and routines to follow from two different places.  It's hard enough to keep things straight without adding to it.

Paige's genetic studies came back: he said she's hyperlipoid? and has many double chromosomes?  I had no idea what he was saying, but the important thing he said is it's a good sign, and she should be fine, the treatment should work. She doesn't have any of the resistant chromosomes that can be hard to fight.  So her prognosis is excellent!  We're back on the 3rd for her first of 3 LP's and then after that she starts intermaintenance.  I'll probably post about the different stages once I have a chance to go through them.  Before she starts each stage they have to make sure her counts have recovered.

Dr. Davis was surprised she still had so much hair.  We definitely notice it thinning, but we're not finding a lot of hair on her pillow or anything.  He said he believes it's a valley thing.  He's had a fair amount of patients from the valley that didn't  lose their hair like most do.  Perhaps during the stage delayed intensification she might lose it since the meds are quite intense during that stage.

Thank you everyone who had purchased items form us to help us during this time off work!  We really appreciate it.  We have lots of silicone bracelets coming this week, plus pins, lanyards, and beaded bracelets.  We also have t-shirts left, but no more size large.  Thank you for keeping us in your thoughts and prayers.  We love you!
at

2 comments:

Anonymous said...

Jan, I am so happy that Paige will be o.k. Its a long road and the going will be tough but she'll come out of it in the end! Thank God for that.

Love Sharla

October 28, 2008 at 9:44 AM
Anonymous said...

hi guys. sounds like you have had quite a time the last few days. just keep on doing what FEELS right jan - it will be your best decision. take care of yourselves and keep your chin up sweeties. love you much, uncle johnny and auntie tina. xxx

October 29, 2008 at 2:34 PM

Post a Comment

Subscribe to: Post Comments (Atom)

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.