November 15, 2008

Ho Hum

Life around the Van Egdom household is boring.  After a few days of severe behaviour issues that had me pulling out my hair, Paige has turned a corner.  If it wasn't for all the hair falling out, you wouldn't even know she was sick.  She's losing copious amounts of hair, but you can't really tell.  She still looks like she has lots. Crazy!

We go to BCCH monday for her last LP this phase.  Then she has a break, and starts the next phase in Dec.  We're going to try and put her back in her dance class next week.  She says she doesn't want to, but I don't think it's cause she doesn't feel well.  Maybe she can do a few days of school.

We've been visiting a bit this week, and she's actually done really well.  We were at our friend Kristy's house visiting with her and her sister Kathy and their kids.  Paige actually played pretty well with the kids, which is good.  She's not usually good at socializing with others.  Then on friday we went to see a friend from preschool and dance class, and she had a good playdate then too.  It's nice to see her full of energy.  I dread when she changes again.

She has developed an annoying habit, which honestly started before she was sick, but has gotten much worse.  She'll want something, but will only point, grunt, and whine.  She won't use her words.  And no matter how hard you try, she just continues and gets really frustrated that your not understanding her.  If she didn't have such good language skills, I would take her to speech therapy or something.  Yesterday I actually wondered if she might be slightly autistic?  But I'm hoping I'm overreacting.  I do think it might be a symptom from when she wasn't feeling well, but we didn't know it (before she was diagnosed).  The other night she just pointed to her PJ drawer, but wouldn't tell me which one's she wanted to wear.  Just kept whining, grunting and pointing. So I left the room for about half and hour while she cried on and off.  Finally I went in and held her and she finally said "plaid" as in the plaid nightgown. All that work for one word, arghhh!

Having Todd back at work isn't as bad as I thought.  It forces me to go out on the days that he's working.  And to actually do some of the house work. Although I'm not getting much of that done either. It amazes me how much mess one 4 year old can make.

I'm going to slowly start putting up the christmas decorations next week.  Todd has a rule "no decorating until december!" or at least till the last weekend of november.  But it's so much work to put all the stuff out, that i'd like to enjoy it for more than a month.  Paige and I will start our christmas baking as well.  She loves to "help". Todd's started putting up the outdoor lights (not allowed to turn them on yet though).  Paige is so excited.  She really loves christmas.  Today she was asking to go back to walmart to look at the christmas inflatables again. So cute!

I had very good intentions of sending out a thank you card to everyone that has helped us, but I'm afraid I've gotten behind, and I have no idea who I've thanked and who I haven't!  So if you haven't received a card it's NOT because I didn't appreciate your thoughtfulness!  I'm just a little unorganized right now!

Quite a few people have been selling silicone bracelets for us, and we thank you for all your hard work!  We also have lanyards and pins if people think they could sell them.  Just let me know.
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2 comments:

Anonymous said...

Good to read you are getting back into the swing of things. I know what you are going through with the point, whine thing. Isaac does that sometimes it just drives me crazy, I think they are "testing" us ;) He likes to add the bunny hop as I call it in *sigh* toddlers I tell ya.

November 16, 2008 at 6:05 PM
Anonymous said...

Jaedyn does that too when she is really tired or really hungry - although usually its both together that sets it off. Its almost like she can't function anymore - she usually has a good cry and then a cuddle and then can continue on like before. Must be an age thing, lol!

November 17, 2008 at 9:03 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.