Thursday, 6 September 2012

Home as Jayden not well enough for chemo

We took Jayden in early to hospital today. We were originally expected to get thereby 4pm to start hydration for chemo tomorrow but last night I emailed our oncologist with some concerns about illness in the family. Luke had been ill with a cold and I have been Feeling yuck with similar symptoms and was worried jayden would have something brewing. He told us to come in early and have him checked out.

As it happened last night Jayden had a terrible night and I could hear him all night very mucousy. He had a temp in the morning and was just generally not well. We took him in and explained what had been happening and they decided to wait till next week to start the next round. I wish it was never.

While we were there they took blood cultures to make sure the temp had nothing to do with a line infection and he had to do a PNA test (snot test). He hates these and I'm not surprised. They put a long tube down his nose and draw snot out to test. It's very quick but extremely stressful and he screams through the entire process. He knew he was getting it done when we started walking towards the building instead of going down the ramp we normally do. Before we even reached the door to the building he was crying and wouldn't walk in or get in the pram. Danny had to pick him up, he was so upset it was awful. When we got to microbiology that was it, he really knew it was happening and became even more upset. Luke was with us and very confused as to what Jayden was so upset about but soon found out and was a tad traumatized by the whole thing himself. We all were. Hate doing this stuff to him.

We then went back to his room as we had to be in isolation from everyone else because we are all sick with this cold now, danny included but not Layla. She went to school today and she never seems to get ill.

The doctor from the other day who jabbed jayden several times and still didn't get a vein but left him and i extremely traumatized arrived to examine him and Jayden took one look at her and was upset. I have to say so was I but wasn't quite as vocal about it. He wouldn't cooperate with her to do anything but just cried and moved away. I think since the other day he is back hating hospitals.

Danny and Luke had to leave to get Layla from school but jayden and I remained to wait for results of snot test and bloods. Not long after they left the doctor returned with the results of tests. The tests showed Jayden has a low grade virus and bloods are ok at the moment, nothing cultured. So we could go home.

We then rang danny to come get us and waited. Got talking to someone about chicago and at the mention of Procure. Jayden perked up and said " see nannA, see nann? We go see nann?", oh my goodness, he doesn't miss a beat. He misses Marianne from Procure so much it's horrible. We can't even talk about her in front of him because he wants to go see her and when we tell him he can't he cries. They were all so beautiful at Procure and we really miss them all heaps. Wish they weren't so far away.

We got home in time to make dinner and now everyone is in bed. Asleep. I should be too. I'm so tired.

I feel like I can breath a little better now knowing I don't have to put him through this torture tomorrow. Knowing that we have a few more days together.
How a day together becomes so damn important now. Every moment, cuddle, smile, word is so damn precious. I don't ever want to let any of it go. I feel like I'm holding on to It all so tight now that every muscle in my body aches.

I worry so much that the next time I allow them to do this we will lose him forever. I'm so very scared. I try not to think about it but how can I not. I'm just at a loss as to what to think. Its so nice to know we have more time, I wish I could have more.
I wish I could have my little well boy back. Not a day goes by that I don't wish that.






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