August 5th, 2013

Monday
RMH

So not a lot has changed in the big picture, but we do find ourselves again living in two cities.  Just after your mom did the last post Abbi started to develop a cough and a runny nose.  We had to wait out the night to see what morning would bring but I could not sleep in fear you could get sick and we would be once again split up.  Morning came and Abbi was no better; me and mom talked about all the options, splitting to a hotel, all doing a hotel and 3 people going home.  It didn't take long and the tough decision was made, mom and girls needed to pack up and head home.  It didn't take long to pack, its like tearing off a band-aid and its just better to get it over with.  The girls were pack by just after 9:00 AM and we were once again a two man team.

We hoped now more than ever your counts on Sunday would be up but that was not the case.  We spent Sunday morning waiting for counts to come back and then the afternoon waiting for platelets to be prepped for transfusion.  It was a long day as we are both a bit anxious and you are not happy not being able to go somewhere to walk or be entertained somehow.  The two of us need to work together to make sure we keep you safe, we feel so lucky you still have no side effects but the longer it takes for counts to come in the greater the chance the side-effects or infections could come up.  It becomes a struggle to give you some quality of life out of hospital and keeping you healthy. The second part is now we want to do maintenance in 21 day cycles instead of the planned 28, this will shave a whole month off treatment.  So 21 days is just next week on Wednesday, come on Neutrophils!!!

I thought I may take this time to also explain or clarify some of the medical terms we keep using, I have got some feedback it can some times get confusing.

CBC or Complete Blood Count- You have Red Blood cells that carry oxygen, Platelets that stop bleeding and White blood cells that fight off infection. White blood cells are made of neutrophils and they are represented by one number called ANC (Absolute Neutrophil Count).  The various chemo drugs kill off these cells just as they do the abnormal cancer cells.  We use transfusions to keep Red blood cells and platelets in check and G-CSF to promote the development of  neutraphils.

LP or Lumbar Puncture - The doctors sedate you and take out some spinal fluid than inject a mixture of drugs to treat any cancer cells in your spinal fluid.  The blood and spinal fluid have a barrier that does not allow all drugs to pass between.  One of the greatest effects on the chance of cure for this particular cancer is the use of drugs in the spinal fluid, this alone has saved hundreds of lives.

Bone Aspiration and Bone Biopsy - This is done to detect if the treatments are working and looks for any signs of cancer, its done during the LP's.  The difference between an aspiration and a biopsy is an aspiration uses a syringe like device to suck a small amount of marrow out where a biopsy uses a screw like device to extract marrow mechanically.

Mucositis or Mouth Sores - These sores are like cankers but the older kids we talk to say they hurt much worse and they can occur anywhere from the tip of the tongue all they way through the digestive system to the bum. It occurs because the cells that line the digestive systems metabolize or regenerate fast and so they also break down fast like cancer cells during Chemo.

Dressing Changes - Once a week we must take the bandage on Kallum's chest that protects where his central line enters from infection.  This involves cleaning the skin and part of the tube under the bandage with a cleaner that kills bacteria.

Cap Change - The caps at the end of Kallum's central line where various meds are given and blood is taken, its like a quick connect system.  These must be changed by nurses or us once a week.

Hep-lock - Every 2 days the nurses or us must inject Heparin into both your tubes to make sure there are no blood clots or dissolve any that are starting to ensure they do not enter your blood stream.

We are looking forward to Wednesday as Mom and the girls will be coming back to stay with us before they head to Winnipeg.

Love,

Dad