Paige's Leukemia Blog: January 2009

January 28, 2009

All about Janis

Well this post is all about me! Paige is doing great! She's set to start her next phase of treatment on monday.

I, however, am experiencing some issues. Many of you know I have struggled with depression over the years. The stress of fertility treatments, Paige being diagnosed, and the pregnancy (although a blessing) has finally caught up to me! I've found it harder and harder to cope with the littlest things in the last few weeks. Just getting Paige to bed is like running a mental marathon for me. I am so tired, I sleep more than I'm awake, and the fatigue is unbearable. So I've been referred to the Reproductive Mental Health program through BC Women's hospital in Vancouver. I saw a psychiatrist today, who mostly just collected data on my history of depression and how I'm doing now. Then she discussed my meds in relation to safety during pregnancy, and how best to treat my symptoms. I will be seeing her once a month during the pregnancy, and for up to a year after delivery. I had severe post partum depression after Paige was born, so I'm at increased risk this time around. Todd and I talked previously about him taking a leave from work during this next phase of treatment for Paige, and I think we'll explore that option again, so he can help while I try to get back on track again.

So keep us in your thoughts and prayers. I know God doesn't give us more than we can handle!

January 20, 2009

On Break

Paige's appointment on Monday went well. She had an echo (ultrasound of the heart) done because one of the drugs next month can affect her heart and they need a baseline. Spoke with her oncologist, and the AraC (the four days in a row chemo) can be given at the cancer agency in abbotsford, so he's going to arrange that for us. Her counts were really good. Her Neutrophils were >2, which I haven't seen for a long time!

Many of you have heard that we're expecting a baby in September. We're excited and anxious at the same time. I'm just over a month along, and am already feeling quite ill and lethargic. Doesn't spell good news for the future. But I'll take it one day at a time. It's a blessing either way! Just goes to show, when you're counting on it to take a long time to get pregnant, is exactly when it doesn't. Hee Hee.

January 16, 2009

Treatment Calendar

A few people have been asking about Paige's treatment schedule for February and March. So I've created a calendar and posted a link to it (click on "treatment calendar" under "links" to the left). I'll update it once I know for sure if Paige starts her next phase on February 2nd. I don't want to enter anything past March in case it's delayed like last time. After creating that calendar I feel a little better about delayed intensification, her next phase. It doesn't seem so bad once I have it all laid out in front of me. And we'll see who wins the war on the one drug Cytarabine. I would have to drive to BCCH 4 days in a row if they won't let me administer it at home. I'm pretty stubborn though, so we'll just have to wait and see.

Better

Yesterday was a good day. Paige was tired, but no puking! She seems to be back to her old self again today. We're back at BCCH on monday, but she doesn't have an LP so I'm hoping she won't get sick again, since it's 2 chemo's instead of 3. We'll see. Paige is spending saturday night at Todd's parents. It'll be nice to have a night "off". We'll see how she does. She's still very clingy with me, but she's also very close to her grandparents so I think everything will go alright.

January 13, 2009

Worst Day Ever

Well all of a sudden, the chemo caught up with Paige yesterday. She threw up during the night, and all through the day. She actually came to bed with me in the afternoon for a nap, and ended up throwing up all over my back! Last night was horrible. She woke up puking and crying and was just in a state. In desperation i gave her a gravol suppository, and she was really mad I put something "in her bum". But i just didn't know what else to do. I had called our primary nurse during the day, and she had a doctor call in a refill for our Zofran (strong gravol type med). We were able to get quick dissolve tablets instead of liquid which has worked out really well. I even managed to give her one while she was asleep. I am getting more and more terrified of february, as we get closer. If she's this bad now, what will it be like then? Today she's in good spirits. She's thrown up once this morning, and is complaining about her tummy still. She's not moving much, just hanging out on the couch, but she's happy. It's more stressful, because she doesn't have that reflex that cause you to run to the bathroom or grab the bucket when you feel you're going to puke. It always ends up in her lap, on the floor, or in her bed. Makes for a lot of work.

January 10, 2009

A little sick

Well Paige had another round of chemo on thursday. She had an LP and the same two IV chemo's she's been getting. It seemed to hit her a bit harder this time. I wonder if it's the spinal chemo that causes her to be sick? She puked that night and again the next morning. But then the rest of the day she was fine. Running around as usual. It's so sad to see her sick, and complaining about her tummy. But she bounces back real quick. Much more resilient than your average adult! She has her last appointment for this phase on the 19th. And then we have a break until February 2nd. Then, if her counts are okay, she starts delayed intensification. 6 weeks of intense treatment! But then we're on to maintenance and our lives should return to normal (whatever that is!). They checked her for a bladder infection, because she was unable to make it to the potty for over a week. But so far she's clear. I ask her if she's gonna be the first child to start kindergarten that's not potty trained! But she seems to be back on track again, as of today. She seems a little constipated so I've started her on the laxative they gave us early on. Maybe that will help.

The whole family was sick after new years. I got hit new years day. Felt like I had the worst hangover ever, which would have been fine, if I had been drinking! Stayed in bed for over two days! Then Todd started to feel ill. He's just getting better now. In time to go back to work after his extended christmas vacation, poor guy! So far Paige has escaped catching the bug, hopefully it stays that way!

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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.