Friday, 17 January 2014

Appointment at endocrinology

Thursday night

Jayden had an appointment with endocrinology yesterday at PMH.

He didn't want to go and cried on our front steps before we left. He knew he was going to the hospital and he was scared. I sat with him on the steps and talked about what wAs going to happen. Promising him that nothing bad is going to happen and he was going to be ok. It took a while, lots of cuddles and eventually he was ok about getting in the car.

He sat silent in the back for the majority of the journey until we were closer to the hospital.

We parked and walked in. As soon as I walked through those doors I felt ill. The place we had to go to was on the same floor as the oncology ward. Awful memories came rushing back and no doubt did for Jayden. I wanted to cry. Sick feeling in my gut. I felt my hand squeeze Jayden's tighter and when We went in, and sat down in the waiting room I hugged him even tighter.

It wasn't long before we were seen. A nurse came and took us into another room where Jayden had his weight and height measured, all stuff that's he's done before ( hundreds of times), all of which he had to have a lot of coaxing to comply with. He has simply had enough and doesn't want to be weighed, touched, measured, or anything at all anymore. And I totally agree with him. We have all had enough. But this is just the way it is, so we go through the motions.

We were then taken into another waiting room to wait to be seen by the doctor.

Again, we didn't wait long. Into another room. This time with the doctor. She gave us the run down on why we were there. Basically with Jayden's surgery, chemotherapy and radiation many things are affected and can cause problems in growth and his ability to produce steroids and a bunch of other stuff that I can't remember right now. Lots of information. But you only have to google the word endocrinology with childhood cancer and a bunch of stuff about thyroid issues and abnormalities, growth hormone issues, cardiovascular etc, etc. come up. I stopped looking after the first one. Another big misconception of childhood cancer is when you finish treatment it ends??? No it most certainly doesn't end. And the treatment that is used to cure your child potentially causes all sorts of nasties including other cancers.

Of course this is the gamble you knowingly take when you have your child treated for cancer. with the only one thing in mind and that is to save your child's life. I just want my boy to live. Obviously I would prefer he be really healthy and I really wish they could invent treatments that made that possible. But my only thing that I want for Jayden is that he lives. That's all I want.

Back to the appointment......

Jayden was non compliant with the doctor when she wanted to take his blood pressure and nothing I could say or do was going to change things. He does this thing where he closes his eyes when he's stressed and pretends to be asleep. He isn't. I know he isn't. He will remain that way until whatever he's stressing about is gone. So it wasn't until I left the room with him in my arms that he opened his eyes and spoke again. Poor little mite. I must say it's very effective.

This visit was to get a base line of where he's at now and do some tests to see if anything needs to be addressed. Which also involves a bunch of blood tests, one that requires us to be in overnight with a cannula in. The sheer mention of us staying there for a night and Jayden having another cannula in put shivers up my spine and made my anxiety levels hit the roof. No way did I want to do that to Jayden, neither of us did. Inside i seriously freak out at the very thought of doing anything to Jayden that makes him uncomfortable, scared, frightened or sad or any emotion at all that isn't a good one. I know my excessive freak ing out is not a normal reaction. Being stressed out is, but totally freaking out inside where I feel like I'm heating up inside, sweating profusely and my heart is racing, is not. I know that this reaction is no doubt due to post traumatic stress disorder and it's a quick reminder that it's still there and hasn't gone away anywhere. the trauma of the treatment has left deep scars on all of us and changed us all. Really changed us. forever.

Fortunately this particular doctor was really understanding and supportive of anything we decided to do but was also clear on giving us the facts. I Liked her.

She told us that she's concerned with Jayden's growth and steroid production. So hopefully the tests will give us an indication of whether those concerns are valid.
she also gave us time to think about the test that requires him to stay overnight. The others are blood tests that they are hoping to be able to do on MRI day. Next week.

I think being in the hospital that day was made even harder knowing we are due back next Thursday for Jayden's MRI. I am truly petrified of that. They most certainly do NOT get easier. Really, really scared.

I know I'm struggling at the moment even though I'm trying really hard not too. Keeping myself busy just to try and stop the thoughts. But simple things like wiping the bench down and a wave of emotion comes crashing in. Out of nowhere. I feel it hit and try so hard to swim through it. Holding back the tears, the fear, the anxiety. My daughter comes in and asks me a question and I'm able to temporarily snap out of it. Shitty stuff. So damn scared. I so want my baby to beat this. I so want him to be able to grow and experience all the things he should get to experience. Just love my little man so very much.


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1 comment:

  1. Im sorry. Theres so many emotions with this nasty truth of atrt. I am a mother of atrt as well, but my 17th month old son is still in trreatment. Prayers and hugs!

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