September 30, 2008

Day 1

Today Todd, Paige and I all went to the oncology clinic.  Paige got her IV put in and some blood work done.  She had a chest x-ray, and then a platelet transfusion.  Then she had a bone marrow biopsy, to identify what type of leukemia she has, and a lumbar puncture to collect cerebral spinal fluid, to see if the leukemia has spread there.  They also injected some chemotherapy drugs into her CSF.

We know that Paige will be here, at BCCH, for at least a week (originally it was two). They will start her chemotherapy tomorrow. Tomorrow we will also find out for sure what type of leukemia she has.  If it's the most common type, ALL or acute lymphoblastic leukemia, there is a 85-90% chance of full recovery.  But it is a 2 year long process.  We find out everything tomorrow but this is what we know now:
  • chemo will be once weekly, probably at BCCH or maybe surrey (abby doesn't have pediatric oncologists).  Yes her hair will likely fall out.
  • eventually it will be once monthly, and then may be done in abby.
  • she will need about 18 lumbar punctures (they sedate her for this).  She'll have another one at the end of this week. And then weekly and then monthly and then every 3 months. I believe the biggest concern is that the leukemia will metastasize into her CSF, which would be very dangerous.
  • she'll be on a bunch of other meds, which I don't know the names or purpose of yet.
She had been a real trooper today, and wowing the staff with what an easy and co-operative patient she is (wish she was more like that at home, hee hee). She's taken everything in stride, and seems to think this is a fun experience.  I've told her that the blood in her body is having a party they weren't allowed to, and that the doctors were going to make them stop by giving her medicine, and checking her blood to see what the party-ers were up to. She has accepted this and talks about the party in her stomach to all the staff (thank you Yo Gabba Gabba!).
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19 comments:

Unknown said...

I can't imagine what you must be going through!! Our thoughts and prayers are with you all.

Glenn, Evelyn, Joshua & Levi van Egdom

October 1, 2008 at 7:38 AM
Jayme said...

(((Hugs))) to all. Prayers lifted... wish I was there- will do whatever I can to help. Strength to you all... long road ahead for sure, but your positive attitude about this shows in Paige's ability to face this with the strength she has shown.

October 1, 2008 at 8:21 AM
Bonnie & Frank Reisig said...

We are thinking of you and wishing you all the best. Paige sounds like a real little trouper.

October 1, 2008 at 8:25 AM
Cherrill said...

Our thoughts and prayers are with you all. Thanks for keeping us all up-to-date.

Cherrill, Kevin and Anneka

October 1, 2008 at 8:39 AM
Anonymous said...

Grant and I are thinking of you all and hope that you will call us if you need someone to lean on. Our prayers are with you during this very hard time. We will see you soon. XOXO

Grant Danielle, Taiya & Emma

October 1, 2008 at 8:44 AM
Dennis Levesque said...

Janis, I can't imagine what you are experiencing right now. I will keep you and your daughter and family in my prayers. Paige sounds like she has a wonderful, fighting spirit! Take care of yourself and your family.
Erin Levesque (from work)

October 1, 2008 at 8:57 AM
Leanne said...

Love you guys! Our thoughts and prayers are with you. So glad to hear of Paige's great attitude.
Love Uncle Butch & Aunt Leanne

October 1, 2008 at 9:08 AM
Anonymous said...

Please know that we are praying for Paige and your family. What a little trooper she is!

We love you!

Uncle Ron & Auntie Babe

October 1, 2008 at 9:50 AM
Anonymous said...

So sorry to hear this news, I can't imagine all the emotions you all are experiencing. I will be praying for you all, especially that Paige will continue to be able to smile through it all.

Lyndene Janzen (Mat)

October 1, 2008 at 11:21 AM
Anonymous said...

Janis,
We will be praying for Paige and your family. We trust that God is going to infuse you with strength as you go through this journey.

Love Mike Regan Ashton Mikenna and Colby

October 1, 2008 at 11:31 AM
Anonymous said...

We are thinking of you all and sending prayers your way. Anything you need name it even if it is just a visit or meals to go. Call us.

October 1, 2008 at 12:01 PM
Anonymous said...

We love you and are thinking about you guys, remember
" The eternal God is your refuge and underneath are the everlasting arms" - Duet. 33:27

October 1, 2008 at 12:09 PM
Anonymous said...

I wish I could fly home and be with you and your family to support you while you are going through this - I couldn't even begin to imagine your thought process right now, but you are showing remarkable strength just with what/how you are writing. Know that you are all in our thoughts and prayers and we love you.

October 1, 2008 at 2:21 PM
Anonymous said...

Jesse and I are thinking of all of you and saying our prayers for you and Paige. Please do not hesitate to call if you need ANYTHING... we are always here for you. We love all of you very much and we will see you soon.

Love, Tracy and Jesse
XOXO

October 1, 2008 at 4:10 PM
Anonymous said...

I am and will continue to pray for your precious little girl and your entire family- so sorry to hear that you are going through this. May you find strength and comfort and peace through the Lord.

October 1, 2008 at 5:01 PM
Anonymous said...

Janis, Todd and Paige: You are all in our prayers and I hope Paige begins to physically feel better really soon.
((hugs))
Andrea, Brent, Cole & Dylan

October 1, 2008 at 5:01 PM
Greta and Gary said...

Thinking of you and praying for strength for the long road ahead!!!

Greta, Gary, Benjamin & Kyle

October 1, 2008 at 5:25 PM
Anonymous said...

how amazing of you to explain this to paige in a way that she can understand and work with! if love can move mountains we will lift this weight from your family. may paige's positive atitude give you power and our love give you strength. love you much
uncle johnny and auntie tina

October 1, 2008 at 7:41 PM
Anonymous said...

janis: just checked my work mail today. Blessings to you all. I'm praying God will give you peace and a real sense of His prescence as you walk this unbelievable journey.Love Alice VanDyke

October 2, 2008 at 8:25 PM

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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.