Let me start by saying that my Son is (just turned) 2 years old and we found a Wilms tumour on his left kidney (886g).
RANT #1 Diagnosis
We only found it because he fell on a slip and slide and that traumatised the tumour so blood came out of his urine. I thank my lucky stars (not god I am too mad right now) that his older sister (4yrs) was being a cow and pushed him over so this ordeal began.
I know that everyone wonders how do you miss a tumour that is nearly 1kg on a 14kg boy. But the truth is we loved his fat belly. We used to joke about how he ran leading with his huge tummy. He is 2 and they are supposed to be porky right? As soon as the dr showed me where the tumour was and told me to feel I knew that I had felt it before (let the guilt begin). The 2 weeks prior he had been irritable and I chalked it up to terrible 2s. He complained that his head hurt and I figured hey, he is a clutzy kid gave hime a cuddle and sent him on his way. Never did I think oh wait he might have a headache. Later we found out he was suffering headaches from high blood pressure. He went from an outdoorsy kid to laying on the couch watching thomas the tank engine and I used to get mad turn the tv off and make him go play... Looking back I can see he was sick but oh how I missed the signs
RANT #2: My Husband
Firstly let me just say that I LOVE my husband. He has been my rock, my pillar of strength and all the other cliche names you can come up with. Not only did he watch his brother die from testicular cancer but he is now watching his 2 yr old son suffer through chemo.
My whinge is because he is squeamish. To spare him because he has been my rock it has been me that has been through all the procedures. I had to pin down Jake so that we could insert IVs, replace IVs, try and comfort him without being able to hold him as he gets XRAYS (which are really scary for a toddler), take him down for surgery, pin him down so we can remove arterial IVs and so on. Mostly I know that it isn't the procedure but the pinning him down so the doc can do their job that scares him. But I can't stand being the one that does it EVERY time. My worry is that he used to be such a Mummas boy and now because I have had to do all this it has jeopardised the trust. He now freaks out at the hospital when my husband leaves the room because he knows that something scary is going to happen. Yet if I let Hubby stay and I leave the room its like catching him unawares and thats not fair either.
Let me just say that this experience has weeded out the crap from life. I know longer have time for people that dont know what to say and let me tell you why.... A few of my friends knew that I had been at the childrens hospital (thankyou facebook) but had no idea why. A week later they find out that I am still at the hospital (thanks again facebook) and they text me to see what is going on... Not coz they care but because they are curious and trust me people I know this because they have even cornered my other friends at the gym to see what is going on and if they cared surely they would have asked before then.
And then there are the ones that don't know what to say so they just avoid you. I have seen a friend (admittedly not a close friend) who saw me at the supermarket and thought that I didn't see them so they ducked out of the aisle so they didn't have to say anything. The reason this annoys me so much is because I was going through the checkout at Coles and the boy at the register noticed the stitches on Jakes neck (from have the chemo port) and asked what he did (probably thinking it would be another clutzy toddler story). When I told him it was a from putting in a port for chemo he just blewee out his breath and said "Wow that sux" and let me pick the next topic of conversation... This came from a guy who didn't know me, my kids or anything else and I appreciated it... LOVED it. So I don't understand why ppl who know me can't be the same
RANT #4 IM A FAKER
I hate jumping on these support groups because it makes me feel like such a faker. Jake's tumour was removed succesfully we are doing chemo but its only for 6months and then we can move on... Odds are he wont even remember this. Its not fatal. I don't even know if we still qualify as cancer support since the tumour was removed but I have nowhere else to go to rant. I look at the families in the childrens hospital and my heart breaks. And all I can think is that of all the Cancers thank god we got this one and then I remember what we have been through and my heart breaks all over again. 2 years old is way to young to have been through what my little man has been through
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.