May 26, 2009

Perinatologist

So I saw the perinatologist on monday.  I was there for over an hour and a half.  She believes it's primary hypertension.  They'll monitor the babies growth regularly and monitor my blood pressure.  She wants me to return in 4 weeks to repeat the ultrasound (to check the babies growth).  But the annoying this is she wants me to go to BC Womens to see the specialist there.  I don't know of anyone with more credentials than a perinatologist, so I'm not sure why I need to make this trip.  Then I got a message today saying she reviewed my chart and wants me to return next week to check my blood pressure.  I have a perinatal appointment that week, which she knows, and she has me checking my blood pressure 3 times a day, so I don't really understand. Unless she found something more worrisome.  Like I need more on my mind.  So when I return their call tomorrow I'm gonna ask them to explain it to me.  Paige is doing really well.  Todd is feeling less stressed.  
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May 21, 2009

Chewie

As if we don't have enough on our plate, now Chewie is going downhill.  He's had a tumor on his groin for ever, hasn't changed.  Our vet wasn't convinced it was cancer.  Well he started limping over a week ago, and dragging his right hind paw etc.  Found another tumor on his leg.  Decided to change vets.  Went online first and figured out that they're mast cell tumors, which boxers are very prone too.  They're also very malignant!  If you disturb them they can swell up releasing lots of histamine and cause the dog to have anaphylaxis. It would cost over $1000 to remove the one's he has now.  As for his leg, they aren't sure if it's arthritis, and sprain/strain, a bone marrow tumor, or a neuroligical problem.  They've put him on arthritis medication.  If he doesn't improve they'll want to do x-rays to figure out the problem.  The blood work and medication already cost over $300 and the x-rays cost the same.  I didn't think Paige would really care is Chewie died, but when I had to leave him at the vets for an hour, she broke down crying in the parking lot, saying nothing is as fun if Chewie isn't with her! Hopefully he'll live a lot longer.
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May 16, 2009

2nd

Had our 2nd maintenance appointment today. Paige's neut's were over 4 which apparently they don't like.  They want them between 1-2, but they're going to leave her meds for now and see how she is next time.  Other than that she's feeing well.  A bit moody these days.  At first I thought it might be the oral chemo.  But then I realized she's just taking after her mom.  A bossy moody kid.  When playing with her cousins she really reminds me of myself when I was a kid playing with my cousins angela and sharla.  she's such a little mom!  
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May 12, 2009

And on and on

My appointment with the perinatologist at Surrey is on May 25th.  My blood pressure has decreased the last few days.  The diastolic is 80, but that's acceptable.  The headaches remain though.  I guess they could be a symptom of pregnancy, not hypertension.

We've slowly started preparing things for our move downstairs.  Things are a little stressful around here as we still haven't heard from long term disbility.  I left them a message today informing them about my blood pressure, and that my health was being affected by their silence. Tomorrow I'm going to call and ask to speak to anyone that can tell me anything, since my case manager hasn't returned any of the 4 message's I left her. Arghhh!
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May 8, 2009

3D Ultrasound

It's a GIRL!





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May 5, 2009

Nothing's Ever Simple

Well last night, after suffering with a headache for a few days, I was feeling dizzy, stomach pain, and a really bad headache still.  I had been wondering about my blood pressure, but I figured it was a little early to be pregnancy induced hypertension, since I'm only 20weeks.  PIH usually developes later than that.  But I decided to check my pressure anyways cause I was feeling like I did when I developed PIH with Paige.  Well my BP was 200/100.  So we headed off to abbotsford and were seen by my Dr. there.  The concern with PIH is #1 the constricted blood vessels reduce blood flow to the baby, #2 you can develop a very serious condition called HELLP.  HELLP involves the liver, and you frequently experience very severe epigastric pain, which I was feeling. But they checked my liver enzymes and they were all normal.  I developed PIH with Paige, but I was 38 weeks so they delivered me the next day.  This time around it's a little more complicated.  Before 20 weeks they would classify it as primary hypertension (not induced by the pregnancy).  After 20 weeks it's considered PIH.  Over the years since I had Paige my BP has gone up and down, frequently being high, but not high enough that I needed medication.  So it's kinda hard to know what I'm experiencing.  They put me on an antihypertensive, and I'm going to see a perinatologist in Surrey.  A perinatologist is an obstetrician that specializing in high risk pregnancies, or pregnancies with complications.  They can do very detailed ultrasounds and what not.  My Dr. wants them to decide what to do with me.  Mainly whether to keep me on the antihypertensives or not. I had a routine prenatal appointment today and my BP was still high, although acceptable.  With PIH we generally worry more about the diastolic BP (the bottom number) because this is the blood pressure in your vessels when they're at rest (between heart beats).  Today in the office my diastolic was 82 and 78.  Generally the OB's aren't too concerned until the diastolic is above 95 (by too concerned I mean increased risk to baby, mom etc.).  Greater than 100 and things can get very worrisome. If my BP remains high, and therefore my blood vessels constricted, the babies growth can be restricted due to decreased blood flow through the placenta.  They will leave the baby inutero until they decide the outside environment is better than the inutero environment.  In other words if the baby isn't getting enough nutrition, oxygen through the placenta, then it's better off delivered and in the NICU where we can provide these necessaties.  They always try to wait until at least 34 weeks, as this is the benchmark (the smallest amount of weeks with the best outcome).  But I get ahead of myself and probably overwhelm you all.  The above is all worst case scenario.  For now I'll continue to take the antihypertensives and check my BP at home twice a day.  My Dr.'s hoping I'll see the perinatologist within the next two weeks, and they'll develop a plan.  Maybe it will resolve on it's own!  I'm not holding my breath though.  The headache's remain.  Luckily I was given the go ahead to take ibuprofen!  They usually consider it contraindicated with pregnancy, but you can actually take it up till 32 weeks.  So I'm happy about that cause tylenol doesn't do a whole lot for me.

I have to say I was so touched by the caring of my former co-workers at ARH.  When I mentioned to my nurse that I wasn't working because my daughter was going through treatment for leukemia, she said Oh I know about you, your daughters Paige right?  Funny since I had never met her before.  It's so nice to know that people care so much.  A few people came to check up on me and say hi while I was there.  They will truly always be my family, no matter where I work.
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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.