when its good its good but then turns bad :(

well today I got paper work from hospital that tells us about admissions etc, well Miss Alex has been upgraded again to a stage 4 tumor now :( I broke down how bad is it when you see it on paper knew it was borderline stage 3/4 but to see it upgraded on paper made me so upset :(

OK enough on a good note Miss Alex Is doing wonderful she is not so nausous and keeping feeds down :) she has still got pain etc but its all one day at a time dont let if get us down and stay strong for us all, I also had to get a twin stroller as both girls fight over one seat so now they have one each, was hoping to get a second hand one but ended up with a steelcraft duo.

a day at a time enjoy what we have here & Now


UPDATE just called hospital and well it was a paperwork error but OMG what do they think we will think, on a good note mass is shrinking so everything is going along the right track ( thank god) I am still stressing about it Knew it was borderline as we were first classed as stage 4 but so glad its still same and not getting worse but getting better :) ) some new photos of My princess's

week off

well we are enjoying a week away from the hospital this week and Miss Alex has started to eat things ( nibble but its a start) she is slowly getting more feeds too as her tummy tolerates more I am slowly upping the amount back to the full dose ( well we are at half now :( )



next week is the big dose again and will set us back but hoping now that radiation plus her tummy is slowly getting better will only be a small hill to get over, also should get some insite from the US and Xray we had last week, just hoping we cut a break and can move forward.



we also got our first taste of summer ( yes its August) at 31 It was horrid so glad we have air-con here, still miss NSW and friends as Miss Alex has no real friends yet :( but we did have a catch up with friends from SA that now live in Brisbane last time we seen them Miss Alex was 7 months old and they where expecting Daughter #2 Miss R was not in the picture♥

I have restarted my fitness for health reasons and fitness I just feel so BLAH so thought this is a good way to get me fit healthy and happy ( well good stress releif lol)

will add some new photos soon

August Update

Chemo went well yesterday and we did get bloods back this time, Miss Alex is doing good she has lost more weight but every time I up her feeds a small amount she throws up again and then we sometimes lose the tube ( which happened last night of all things :( ) so off to local hospital to have another fitted they isolated us as her Neutrophils are still low but slowly going up, then we where sent to pediatrics as they can do the children feeding tubes ( am thinking this is a weekly-fortnightly ritual and hoping her tummy settles soon), Hubby stayed home this morning to help with Miss Robyn as its hard holding one down and controlling the other, I lost it again ( why do these things happen I feel so bad and yet it needs doing I cry every time and have the guilt build up :( )

yesterday we also had a X Ray and Ultrasound the mass is still in her abdomen ( lymph nodes etc on the aorta) so when they called it a mass I freaked but well its still a waiting game to know if these will cause future issues or that they may now be dead cells ( God I hope so )

Miss Robyn is Toilet training but its having good days and bad as we are just so busy sometimes :( she is good though and does go on the toilet so think I will just keep pushing gently and when she is ready she will stay dry♥

have handed dads estate over to the public trustee but they will need my sister to sign it to them to otherwise it will just rot and well I don't really care as long as I get no bills I am over trying and getting no where, as others have different ideas ( we have no will so this is all that can be done without us paying out more than the estate is worth) OK vent over,

have a week off from the hospital next week and chemo will restart on the 24th so hope its a quiet uneventful week for us as well have no idea when we last had one hehe. same protical with the odd week off now "Dactinomycin (Actinomycin-D, Cosmegen), Vincristine Sulphate and Doxorubicin (Adriamycim)"

OK no idea what else to write now having a mind blank ( lack of sleep an stress will do that)

New Update

Well I have been busy of late and have neglected this blog so am going to try catch up,

1st you know dad passed away well I have been to Adelaide and the funeral was well done I did a slide show as well as music we also had a poster made up for the funeral place to hang, it had Alex at 8 months on his lap :( he only got to meet one grandchild out of 2 :(

we got dads ashes back and did a small service at Grange jetty with mums ashes as well they both got scattered together the night was beautiful too,

my family got to meet miss Robyn too she met her auntie (My sister) Uncle and grandfather ( both DH family) so was good short sweet but good,

OK update on the lady of the year ( Miss Alex) we have had a bumpy road since Radiation feeding is an issue that we have had to cut right back on her feeds so she keeps it down ( still going on that slowly up the amount then have to step back again) she has thrown up 4 tubes so far and counting, radiation ended in July the 1st but still not the best pain meds at night to help sleep and Anti Nausea meds every 8 hrs to prevent the vomiting (OMG I feel so bad giving her all these drugs but know its for the best for her and Us :'(   ) she has lost wait again back under 19kg and hope we don't lose any more, we have had our first blood transfusion too and then her neutrophils dropped and had to keep everyone away :( if its not one thing its 100 but we are just pushing through she is such a strong little lady and is doing so well with it all ( hates Dr's Nurses and anyone that is new at the moment but that's hard as everyone new is someone that may hurt her with the treatment)
had chemo on Monday and we had to wait for blood results but the got lost TWICE! "what the" so in the end they did just the one dose that's done even with bloods not being good we now have the 2 does this Monday coming plus a CT scan to see how things are going,

last weekend we have a good friend up from Adelaide as well Miss Robyn's godfather, it was a short stay but DH needed the boy time (Me time hehe) and they went out to the bar for a few hours I also had a good friend over ( we had never met before this day though so was great to meet in person :) Miss Alex Had a ball playing Wii with everyone too.

well will come back more often when I get time,