Days of the week

IMG_797115th May 2016

I never intended for this blog to become an ongoing sob story, but I guess talking about my 2 year old son’s journey through cancer isn’t exactly going to win funniest blog award – if there is such a thing…which I highly doubt.

We all knew this week was going to be a tough one, being 5 full days of chemo treatment. We were mentally prepared for the long week ahead and although it sucks, we just thought we’ll toughen up and by Friday that would be the end and we would go home and play happy families, right?… Wrong!

Monday when the nurses went to put Cody’s IV fluids through his line, they noticed they could easily insert the fluids into the line fine, but when they withdrew the syringe back it wouldn’t budge, as if there were a blockage of some sort. Same thing happened Tuesday. Again Wednesday.

By Wednesday, the Doctor was concerned about continuing with the Chemo for the day. The doctor held off chemo for 2 hours to see if she could get an X-ray for Cody, but she couldn’t get him one until the following morning. It was decided that although there was a blockage, the fluid could still go through the line and so he still had his day 3 of chemo. We got home at 6.30 Wednesday night, very tired. Still no time to relax because Thursday was bound to be a full on day and that it was.

Thursday morning, Cody started the day with his usual 2 hours of IV fluids. He then had an X-Ray to see what his port was doing. The X-Ray results indicated that the tip of his port line had somehow moved from the centre of his chest up to his neck!

After the X-Ray he then needed an Ultrasound and a Blood test. Just a re-cap, Cody hates being touched. To the point where he screams if any nurse gets too close to him, so at this point, as you can imagine he was very distressed.

After reading the results from all the tests, the Surgeon informed us that he would perform surgery and would either try to salvage the port line or put an entire new port inside him and it might possibly have to go on the other side of his body but they would find that out once in surgery. Thankfully, it didn’t have to be moved. He had his surgery and they put in a brand new port on the same side.

They wheeled him back to the room and he was still sedated. He wasn’t with us long before the surgeon then informed us he would next need another X-ray just to confirm the new port was in the correct position. He was then wheeled back to his room and then they continued to commence his 4th day of chemo. So summing up for the day of Thursday, Cody received an X-Ray, an ultrasound, a blood test, SURGERY, another X-Ray and a round of chemo all in one day.

Needless to say, Cody was not good Friday. He barely moved much. Vomited twice and barely ate anything. At 2 o’clock Friday, they started day 5 of Chemo on Cody as was originally planned. We finally got to leave hospital on Friday at 7pm.

This is the part of our journey where things are getting very real. We knew after 5 days of chemo that Cody was going to be low. But with Surgery on top of it all, it’s made things worse. He has so many medications to take, but the 2 most important ones right now are his pain meds and anti-nausea meds. If we can keep the pain and sickness at bay, then he will be well enough to eat some food. Then hopefully the food will help him have a proper bowel movement, which he hasn’t had in over a week – just to add to the party!

How is Cody right now? Up & Down. When the drugs have kicked in he is good. When the drugs have worn out or after he wakes up from a nap he is not good.

Our Sunday morning wake-up call consisted of Cody waking up at 6am crying. Ben saw that he had vomited. He sat in the shower with Cody while Cody shaked and cried. Cody is losing weight and with his bald head, its truly heartbreaking to see that he is now a fully branded cancer patient. We are now truly living the cancer life now with Cody. It is what it is. We can’t change it and there’s no one cure for it. The doctors have a plan of treatment for him and we just have to hope that it all goes well.

Once again, I don’t mean for this blog to be so depressing. It is however, real. It helps me get all my thoughts out. Hopefully, it gives everyone an inside view of what our family is going through and how our lives are changing.

– Elise x

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Codytherapy

4th May 2016

Hello Friends, Family and Strangers!

Just thought it was time to give an update on Cody’s progress. We are currently in week 3 of chemotherapy and so far so good.

Up until a month ago, I thought chemo was just one medicine called ‘chemo’ and had no clue as to how it all works. So I would like to give you all a basic idea of what Cody’s treatment is like.

It turns out chemotherapy is the term used to treat cancer, but consists of several different types of medicines given at different doses and stages so that the blood levels maintain a steady up and down level.

So during his first week of chemo, he had a 3 day week where he was treated with Doxorubicin, Vincristine and Cyclosphoside – big words huh? It sounded like gibberish to me at first too, but I’m slowly learning the words and pretending to sound like an intellectual when i say them. Except for when I stuff up the words and make up my own like ‘Cancer-oxide’ or ‘Chemo-cristine’.

During the Cyclosphoside days he will experience nausea, so needs to take anti-nausea medication. But the anti-nausea meds can make him constipated so we need to give him Lactulose to combat with that, its funny, but awful at the same time.

Week 2 and Week 3 we were only in for half a day, for Vincristine – this is the drug that makes your hair fall out. Aah, we all know that one!

Ive been checking Cody’s hair every night when I bathe him. Monday night was the first night I noticed hair loss but it wasn’t a big chunk of hair like I had imagined it to be. I rinsed his hair and a couple of strands came out & thought it could be nothing,  but when I rinsed a second time more hair came out. And now that I’m aware of it, I find when I stroke his hair now, usually a few strands come out. I’m assuming it might happen slowly. Ben is eager to shave Cody’s hair – and he will shave his own hair at the same time to match. I’ve had time to think about the hair loss and even though its like having a sticker on your head saying “Hey everyone, i have cancer”, his hair has always been thin anyway and he’s a boy, its really not a big deal to us.

So next week will be a big week of chemo. We will be in for 5 days worth of Cyclosphoside. Our doctor offered us the option of staying in clinic and traveling home each night, OR staying in the nice ward area and sleeping there for a week – We chose clinic. I have a Ben, a Jack, and a King Size bed waiting for me at home and that’s far better than what that the hospital can offer me!

A few people have mentioned to me that it seems odd that Cody is going in for treatment for a week here and then a day here so i hope this helps explains things better. Its all so his blood levels have a healthy up and down balance. The treatment plan that he is on has obviously been created to give medicine to Cody no more than what his body can handle. His blood work so far has been very much to plan, high one week, low the next, so that is good.

Cody. How is Cody going with the treatment? Well, if you came to our house any given day you would not know he was a sick little boy. He’s still full of energy and is usually running around the house or dancing most of the time. This is great and I’m cherishing it because I am fully aware he won’t be like this for long. He will soon get more anemic and sick. Surgery will be somewhere around week 6 or 7  and things will probably keep going downhill. Right now it is the calm before the storm.

When people say to me take one day at a time, I really do now, we have to! If I think about the ‘what if’s’ too much I would turn into a big Debbie Downer. So one day at a time, meaning today, Cody is a happy little chap, which means today is a good day 🙂

– Elise x