August 22nd, 2013

Thursday
Home
Weight: 14 Kg

You are home!!!  You were able to come home on Monday and we are praying you can stay home until Sept. 4th.  So far, so good!  We did have some blood work done yesterday which showed that your red blood cells were low so you needed to get a transfusion.  We spent 6 hours at the Medicine Hat hospital yesterday and as a result your energy is through the roof.

This last round of chemo went fairly well.  However, you are really starting to have a temper and tend have many temper tantrums now that you are back in your hospital room.  You are mostly mad about food and not liking a lot of the food or just not sure what you like anymore.  At times, you can be very rude and yell at the nurses, dad or me.  It is a hard balance trying to decide to discipline you, or just letting somethings go.  We question whether this is just a stage.  It is hard not to feel guilt that you are going through this and we are still going to have to treat you like a 2 (almost 3) year old boy.  It is not an easy balance. 

The hospital stays tend to be a bit easier now that you are meeting some very special friends.  There is another 2 year old boy who you love talking to.  You have had rooms beside each other a few times and have shared some car racing with.  There is also a special young lady, 14, who loves talking to you and I am pretty sure the reverse is the same.  Dad and I enjoy talking to her too as it gives us perspective of what you are going through.  She is very knowledgeable about leukemia which leads to some great conversation.  It is important for your Dad and I to form these relationships with others on Unit 1 as they are going through what we face everyday.  Sometimes we talk treatment, etc but sometimes it is nice to hear about their lives outside the hospital too.  Our prayer list has definitely grown in the last couple of months and our lives changed forever.

Now that your home we have been busy playing with friends and family.  Your favorite pastime is your wiggle car.  We can barely get out of the van and you are already back on the car.  If you are not outside you are spending time in the house playing cars and babies with your sisters.  Grilled cheese is still a favorite right now, but it has been fairly easy introducing a few new things into your diet.  At least you are not eating grilled cheese for all 3 meals and snacks!

The countdown is on for everyone as Back to School is just around the corner.  Your dad and I are definitely not counting down.  I am sad that summer has come and gone so quickly.  I was so happy to have the girls with us through many of your treatments, which was possible because school was out.  I know we are going to really enjoy these 16 days left before you head back to the hospital.  I only pray that next year you will be able to have a better summer filled with sand, water and camping.  These are small things, but important things to little boys. 

You are an amazing fighter everyday of your life!  You inspire me to be positive and to cherish the little things! 

Love you to the moon and back,

Mom

Here are some pics from the summer.  Also, a tattoo that I got as a reminder of your constant journey.

August 15, 2013

Thursday
Unit 1
Room 1110
Nurses:Renee and Laura

So its been awhile since we blogged and overall its seems we just are blogging less but its really a good thing.  You have been spending increasing time out of hospital and keeping us busy to make the most of this time away.  The last round has been our best so far, we spent 5 days in hospital, 12 days in Calgary waiting for counts and side effects and 4 nights at home.  All that with no major side effects!  Your counts did drop to zero for ANC so you were very susceptible to infections again or mouth sores, but they never came. 

We came back to hospital on Wednesday, but you had a runny nose for the last 4 days at home, it was clear and no fever so we assumed it was just allergies.  We started chemo anyway and after a day of isolation the doctors agreed and you now can also do your rounds in the hallways between chemo treatments.  This all adds up to 5 days in hospital, that won't be miserable (total of just over 2 hours of being hooked up a day). We should also be able to go home to Medicine Hat on day 6 in relative safety as it is not likely your counts will drop all the way to zero.  We are using G-CSF again to help keep your counts higher.  This means you could possibly spend the last 16 days of summer with your sisters before they head off to school and we go back to hospital.

You are courage to me,

Love Dad

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

August 2nd, 2013

Friday
RMH
Weight: 14.4 kg

It has been awhile since I have updated but that is because we have been busy.  You were able to leave the hospital on Saturday, as your chemo meds were done being administered.  Your sisters and I arrived on Saturday to help pack you and dad up and head out.  It was decided that we should stay in Calgary to wait for side effects.  You are taking the same chemo meds that have given you nasty mouth and bum sores; however, this time you are taking less then you were previously so we just aren't sure what to expect.

We tried getting into RMH, but unfortunately they were full.  Luckily we were able to stay at Uncle Brandon and Aunty Chandra's house until Wednesday when we finally got the call that we could get a room at RMH.  We have been here for the last couple of days.

Your sisters started at day camp this week and they absolutely love it.  The camp is sponsored by Kids Cancer Care Foundation and it is for kids with cancer, kids with siblings of cancer and of course survivors of cancer.  The girls have learned so much from the camp and I love that they can get to know other kids their own age who are also affected by cancer.  The girls can't wait to go again next year and take you with them!

Today you had an appointment at the clinic for a CBC and your WBC came back at zero.  This means we needed to revamp our plans for the day and stay outside or at RMH for the most part.  There is a great park at RMH as well as a basketball net that you love to play on.  It is tough to find things to keep busy when you are in a city that you don't live in, but RMH does do a good job with providing activities for the whole family.
You will get blood work done again on Sunday and if your counts are on the rise and you don't have any side effects, we could be on our way back to Medicine Hat.  We know not to get our hopes up, but it is so hard not to.  I think we are all hoping to get back to our own beds!!  We will just keep you in your "bubble" for a couple more days and hopefully all will be good.

Love you buddy,

Mom