October 16, 2008

Day 15/16

Our appointment and BCCH yesterday went really well.  We left the house at about 0620, and arrived there at 0810.  Our appointment wasn't until 0900, but they started us anyways.  They accessed Paige's VAD (pushed a needle through the skin, into the "sponge", that has a tube attached to it). Paige was "nervous", her words not mine, but she did really well.  The numbing cream worked really well.  She may tell you different, but she didn't even feel it going in. First they did her blood work, to make sure she had enough platelets before the LP.  She went in for her biopsy and LP, and it only took about 20min.  A resident did it this time, and for some reason I believe she did a better job than the last Dr.! Don't know why. Then they administered her IV chemo drug, which only takes about 5 min.  Then we just waited for the sedation from her biopsy/LP to wear off.  And then we were on our way at about 1130.

We go again on wednesday just for her IV chemo, which is when we'll get the results of her biopsy and know if they'll have to add another chemo drug.  Her next biopsy is scheduled for the 27th.

Although Paige is challenging at times, I still can't believe how good she is. Honestly I would be a real brat if I had to go through all this stuff.  She doesn't kick and scream when she goes for these procedures, it's truly amazing.  It breaks my heart when she thanks me for silly things like letting her come with me on an errand, or buying her cheese sticks.  It really hit me last night, that she just shouldn't have to go through this crap, she shouldn't have to be so co-operative.  I talked to a few people in the waiting room.  One little guy was diagnosed with an esophageal tumor at 4 mo.  He spent the first year of his life on the ventilator, and therefore sedated, while they did chemo and radiation.  So he's really developm
entally delayed.  She said they've been treating him for 3 years now.  She knows another kid that's been going through treatment for 8 years.  It reminds me that we're not alone, and it could be much much worse!

I have to say I'll be happy when she's off the Dexamethasone though.  She did sleep through the night last night.  But she ate like a pig come morning.  Two bowls of cheerios with milk, 4 bear paw cookies, and a full glass of strawberry milk. About an hour later, a cup of applesauce, and a cheese stick.  Whew my tummy hurts just thinking about it.  She is totally addicted to McD's, but she needs extra fat and calories, so I'm not worrying about it.  She has the same thing every time!  The dietitian warned me kids on Dex crave salty food.  She said she's seen a 4 year old eat a pound of bacon.  Well we didn't listen, and gave her some b
acon, and now she asks for it at every meal!  Oh well, takes after her mom I guess.

She's kinda pooped today, and bit nauseous I think, so I'm keeping up on the gravol.  She handed me a chunk of hair last night, only about 10 strands, but it's definitely starting to happen.  I keep bringing up the fact her hair's going to fall out to get her used to the idea, and she's stopped complaining about it, so perhaps it's working.


I buzzed my hair with the clippers. I used the largest guide though so it's not extremely short. And dyed in black and pink again.  I let Paige watch me buzz it, hoping she'll let me do hers when the time comes.

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3 comments:

Anonymous said...

Sounds like you guys are still crazy busy.

October 16, 2008 at 1:59 PM
Todd, Janis, Paige said...

You know the days go by so quickly, but we don't seem to be doing anything! We don't feel busy. We've had two visitors today and it's been nice.

October 17, 2008 at 2:10 PM
Anonymous said...

Your awesome Jan!

Love Sharla

October 28, 2008 at 9:49 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.