November 26, 2008

Feeling Down

Things have been going well.  Paige is back to her old self and enjoying this break from treatment.  She hasn't had any more fevers, although she still has a nasty cough.  She has so much energy!  We've been visiting friends with kids and she's enjoying the socialization.  I was a little disappointed that Paige wouldn't be able to attend preschool when she's feeling well.  She's missing so much out of life!  I just want her to experience as much as possible when she's feeling well.  I'm a little upset that we couldn't find some way make it work, but it's all about the money.  I could probably afford the $80 a month to hold her spot, but it just seems like a waste of money!  She starts chemo again Dec. 1st so she may start feeling ill again.  I thought I was handling the school thing pretty well, until we went to dance class today.  I asked the owner what she wanted me to pay her. I said Paige may be able to come until January, but then would be absent for February and March.  She said that Paige can't really miss those months because that's when they start working on their year end performance.  She doesn't want Paige to get behind and then she'll feel bad when she can't dance like the rest of the class.  Which I totally understand!  She said Paige could continue to come when she's feeling well, till December, and I don't have to pay.  Then in January she suggested we do a short session, the six week one's they have a couple of times a year.  So I guess that's what we'll do.

I'm not upset with the preschool or dance studio.  I think I'm upset that Paige has to miss out on all of these things on top of having to go through treatment for cancer.  Honestly it's just not fair! She should have the opportunity to enrich her life whenever possible!  It's very frustrating.  But it's just a fact of life.  I guess I wasn't really prepared for what this two years of treatment would mean!  I thought about the commuting to children's and the side effects of treatment etc.  But I never really considered how disruptive this would be for Paige's academic and social development. It's hard to because Paige's best friend Lily is in the same class, and I really wanted to keep them together.  We saw another girl from Paige's preschool class at the studio today.  Apparently there's a new Paige in the class, but she told her Mom she likes the other Paige better, and misses her!  So sweet!  It's been so hard for Paige to make friends, I'm sad that just when she started to blossom, she has to be excluded.  She doesn't really know any different, but I know what she's missing out on.

So just another upset to get used to.  I suppose I should get used to the idea that Paige having leukemia isn't just going to fit into our life easily.  I'm glad that it's just preschool she's missing, and not kindergarten.  But at the same time, if she was in public school she could go whenever she was feeling well.  But I guess then she'd be more behind than she will from just missing preschool.  So perhaps there is a silver lining to this cloud.  At least she got in one year of preschool.  I'm so glad that I didn't listen to Todd and started her with the plan of two years of preschool instead of the one.  She wouldn't have gotten any!

Well I'm just gonna concentrate on the holidays.  We're decorating the tree today.  Paige is super excited about this christmas, and it's so nice to see her getting into the spirit of things!  We've decorated her gingerbread house already, and I have to say she did a wonderful job!
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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.