Paige's Leukemia Blog: December 2008

December 27, 2008

Christmas

We had a wonderful christmas! Everything went well, and I enjoyed spending time with family. Paige did really well! We didn't get home from Todd's parents christmas day until well after midnight. I was so tired, I just couldn't bear the thought of Paige sleeping in our bed. So I took a "hard line" with her and absolutely refused to let her into our bed. She cried for awhile but finally let me lay down with her in her bed. Luckily she was so tired she fell right asleep. Things have been going well since then. She's slept in her bed each night, and tonight she went right to sleep and didn't even ask to sleep in our bed. I guess now she know the answer will be no, so why bother asking?

My depression has lifted quite a bit. I don't know if this is from christmas, or just a better attitude. I've been "cleaning as I go" (a little phrase used when I worked at McDonalds) and have actually been keeping the house really clean. I think that is helping a lot. I'm trying to get organized and actually made up Paige's antibiotic for the weekend ahead of time. So now I'm not forgetting to give it to her.

Thank you to everyone who prayed for little Luke. He made it home for christmas, AMEN!

We're back at BCCH on monday for Paige's next chemo. Paige has a nasty cold right now. But I started her puffers right away, and it seems to be getting better already. Hopefully she won't spike a fever.

December 23, 2008

Update

Paige's appointment on thursday went okay. It took a really long time! We were there for over 4 hours, waiting for pharmacy to make Paige's chemo! The play room was full of kids waiting for their own chemo. Perhaps pharmacy had staffing issues that day? Paige's counts were really low, so they kept her one chemo dose, which is supposed to be increased each time, the same as last time. She got her flu shot which went well. The nurses are always shocked at how co-operative she is. They comment on how easy things go with her. I guess as long as her mommy is there, she'll agree to anything. She threw up the next morning, but seemed to recover quickly, and hasn't complained of feeling ill since. We're back there on the 29th for the same thing.

On sunday we were with my Dad's side of the family to celebrate christmas. We had a great time visiting with Aunts, Uncles, and Cousins. Paige met some of her 2nd cousins, again, and had a lot of fun running around. It's funny how everything is new to her, even though we do it every year. She is so active and full of energy. If it wasn't for her bald spot, you'd wouldn't know anything was going on. We're getting close to head shaving time. I think we'll wait till after christmas. He hair is looking a little more "straggly" every day. But there's still so much of it, I don't know if we'll be brave enough to shave it.

We're hosting christmas for my Mom's side of the family on christmas eve. I'm busy cleaning today to prep (with my Mom's help of course). We're looking forward to visiting with family, especially my cousin Sharla and her family. They live in Castlegar, and we only see them once a year.

Christmas Day we open our presents here and then we're at Todd's parents house for the day, and for christmas dinner.

New Years Eve we're having our annual fondue with friends. We have many traditions: playing shuffle board, shooting a champagne cork off the patio to see how far we can get it, and playing bocce ball in the cold dark night.

New Year's Day we'll be with my Mom's side of the family again, for New Years cookies (deep fried fritters).

We're going to a get together with Todd's Dad's side of the family on January 2nd. A full and very busy christmas season for us. But it keeps our mind off of other less positive things.

Sometimes when I think about everything we've gone through with Paige, I have to give my head a shake. I still can't believe it! But we are lucky, it could be much worse. Please pray for the little boy we met when we were in the hospital. I've mentioned him before, as his family is friends with some of my family. He's only a year and a half, and has leukemia like Paige. But he has a very resistant chromosome, that is difficult to treat. He's admitted each time for his chemo, and this last round was particularly difficult. He had some bad side effects, and then cought a virus, which is next to impossible to treat. They're hoping to be home for christmas, but it doesn't look promising. They've been in hospital since Dec. 5. So Luke, and your family, I am praying for you, and hope you are getting a little better every day! Stay positive! God is on your side!

December 17, 2008

Carrying On

Not much has changed around here. Paige is sleeping better. She's in the habit of falling asleep in our bed. But at least she falls asleep, so I'm not gonna fight it. She easily moves to her bed before we need to go to sleep, so it's working for now. We're hoping our drive to BCCH on thursday will be uneventful (ie. the snow won't be a problem). She's still very excited for christmas! She wants everything she sees which I find cute and Todd finds annoying. But that's just what having a kid is about, right?

A big thank you to Bonnie Kind and all her friends and family. Bonnie dropped off a truckload of gifts for Paige and staples to stock our pantry from a whole bunch of people she had shared our story with! The capacity of strangers to show they care still astounds me! It was very much appreciated. We even managed to put some toys away to pull out one day when she's complaining of boredom.

I'm feeling a bit restless these days. Paige is feeling really well, and sometimes I can almost forget that she's being treated for cancer. I miss work terribly, and feel like it's been years since I've practiced nursing. I'd go back to work, but Paige is terrified any time I leave the house. I can't even go downstairs without her following me. I fear when I do return to work. But that's a while away yet. So we'll just carry on.

December 14, 2008

Sleep? Please?

Well Paige is still having trouble sleeping. Except if she's in our bed of course, which equals little sleep for us. She's getting more clingy again, and she's complaining about her tummy. I think the chemo's starting to hit her. But she's still running around. She's got a faint smell coming from her hair like she had during her chemo in the beginning. It took awhile to develop so I think the same thing is happening now. I'm back to giving her melatonin, and a double dose now. It does help when I remember to give it to her. At least she looks like herself. The difference between now and halloween is shocking!

She is really looking forward to christmas, and keeps adding things to her list. I'm worried about a meltdown, cause I don't know if she understand the list concept (that she doesn't get everything on it). So I'm trying to prep her. She playing a lot now, which she never used to do, and managing to amuse herself at times without us or the tv! She's getting really smart too! She makes little comments that are either very insightful, or coincidental. Perhaps I will enjoy this age of 4. She loves looking at christmas lights! We went to the Stanley Park bright nights and she was so excited! It was very funny. She's breaks out into song at any moment and has memorized quite a few christmas songs!

She looked really pale yesterday, and had a bit of a red rash on her face. So I'm thinking her blood work might be off on thursday when they check it. She has a few canker sores on the inside of her lower lip, but she doesn't complain about them. ta ta for now! love you all!

December 8, 2008

Starting Interim Maintenance

We did Paige's bloodwork friday night, instead of Saturday morning. It was way less busy. It went really well. One poke and they were done! We got the results Saturday, and they were good, so we were at BCCH today to start her next phase of treatment. She just had to get two IV chemo's today. The same one she got previously, Vincristine, and the one they used to put in her spine, Methotrexate. After using my ladybug watch to distract Paige during her bloodwork last week, I came up with the idea of using a seek and find book. So I brought one with us today, and it worked like a charm. No crying, fussing, anything, when they accessed her VAD. She didn't even notice! Lovely! She's going to get her flu shot at her next appointment, and I need to get a hold of some for me and Todd.

Our next appointment is the 18th. We're hoping chemo doesn't hit Paige as hard this time. Apparently the methotrexate is known to cause mouth sores. It's given in an increasing dose. So they may skip one dose if the sores are really bad. Her hair seems to be holding up well. All her hair loss is underneath what hair she has left. So sometimes you can hardly tell. But it will probably start falling out more now. We'll just have to wait and see.

Paige has been having a hard time getting to sleep. She's frequently raring to go still at midnight, while we're trying to sleep! And she frequently wakes up at 2am. And she doesn't seem tired during the day at all! I wonder if it's a rebound from the melatonin? Dr. said it might be, but I'll have to do some research.

December 2, 2008

Delay

Paige's platelets were good, >400, but her neutrophils were only .6 and they needed to be >.75. So we wait until next monday to start treatment. She will have to have bloodwork done on saturday again to make sure her counts have recovered enough to start. Apparently this is common, so we're told not to worry. So she gets a real break, no meds or anything, for a week, Wahoo!

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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.