October 2, 2008

Day 2

Today was rough.  First thing in the morning we were told that Paige should have her surgery sometime in the afternoon. So she could only have clear fluids until 11am and then nothing until her surgery.  She was not happy about this, especially since she didn't really eat anything for supper the night before. She doesn't like jello, and for some reason I couldn't get her to eat a popsicle, which is usually her favorite treat. Finally at 11:30 (shh, don't tell the nurses) I got her to drink some apple juice and eat half a popsicle. She got another platelet transfusion.  Her plt's were 85 but they want them at 100 before surgery.  As it turned out they were still infusing when the porter came to take her to the OR.  The surgeon was supposed to come up and talk to us about our options etc etc.  But this hadn't happened yet.  But they had to take advantage of the OR spot.  So they gave us the quick explanation down in pre-op.  I had been told I could go in with paige and stay with her till she was asleep, but for some reason that changed.  Paige wouldn't go to the anesthetist so she sedated her in the hallway in my arms, and then took her.  It looked awful and for some reason I found this all very traumatic.  I also think that since I need to "hold it together" when Paige is around, that when she was gone I just couldn't do it anymore.  So I had a good cry, but it actually made me feel better.

She went in for surgery just before 4pm, and we had her back in her room at 5pm.  It went well and she now has a VAD (venous access device) so she doesn't need pokes for blood work anymore.  It's all making it much more real, seeing her walking around with the dressing on her tummy.  I keep thinking, only sick kids need these! She has such a positive cute attitude! I was on the phone and didn't hear her say she had to pee, so she had an accident.  She was quick to point out it was my fault, and now I would have to go to the Dr. for an arm squeeze (blood pressure), poke, and nose tickle (nose suction).  We all had a good laugh that the "minor" surgery she had wasn't included in that list!

Most of our visitors saw Paige today. My parents unfortunately showed up just as Paige was going to the OR.  But going for coffee with them was a much needed distraction. My cousin Andrew, his wife Andrea and their kids came just before we got Paige back from recovery. She wasn't at her best at this time, but I really appreciated the company.  Todd received free Canucks tickets from the Child Life Specialist here, so he stayed until she was back in her room and then he was off for a night of fun.  I've informed him that monday is my day!  I'd like to head home for a shower and nap in my own house, and maybe a mani/pedi at Blush Salon. I think a little pampering will go a long way!  My brother Kevin and Sister-in-law Rochelle came to visit with my nephew Graeme, and my nieces Vanessa and Hayley.  Paige had recove
red by then and was her happy talkative self (I just don't know who she inherited this gift of gab from?). She insisted that everyone paint their nails with the new nail polish she received
 from Andrew and his family.  She didn't manage to convince Kevin and Graeme to take the plunge though.  That nail polish was a life saver, it finally got her out of her post surgery funk! Thank you Loge's!

 So now with her surgery done there's not much on our plate for the next few days.  She has blood work every morning and evening.  She takes oral meds around the same time. Sometime this weekend she gets her first monthly shot of "Peg", one of her chemo drugs. 

So just to remind anyone planning to visit I might not be around on monday, but Todd will be here of course. Also I now have voice mail on my phone, so I won't miss any more calls!

Some info on her VAD:
Central venous access devices are small, flexible tubes placed in large veins for people who require frequent access to the bloodstream. A port is placed
 completely below the skin. With a port, a raised disk 
about the size of a quarter or half dollar is felt underneath the skin. Blood is drawn or medication is delivered by placing a tiny needle through the overlying skin into the port or reservoir.


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5 comments:

Anonymous said...

Sorry to hear you had a rough day today, hopefully things will be better tomorrow! Enjoy your day monday, you absolutely deserve it. You are an amazing, strong woman, Paige is lucky to have you! XOXO Pam

October 2, 2008 at 11:34 PM
Anonymous said...

whew - that was quite a day! well done! you're a pretty tough family. good that mom and dad arrived to distract you. i think that you and todd taking a little time for yourselves will help keep you all strong. good idea. we send a special hug to little paige and much love to you all.
uncle johnny and auntie tina

October 3, 2008 at 8:06 AM
Anonymous said...

Hey Luv,
We 're thinking and praying for you and yours. Love you

Love Sharla and Family

October 3, 2008 at 8:51 AM
Anonymous said...

I'm sorry yesterday was so tough - and I'm glad things will settle a little for you all over the weekend! What a trooper Paige is and you and Todd are doing amazingly well!! Jan - this blog is fantastic and even though we haven't been to visit - know that you are all in my thoughts and prayers constantly!!!

With lots of love coming your way!

Auntie Babe

October 3, 2008 at 1:06 PM
Anonymous said...

You're very welcome you guys :) Glad to hear she is feeling better and it sounds like the surgery will save pain in the future so that is good.

October 3, 2008 at 7:19 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.