week 2 of new protocol

Right: wanting hugs from everyone

below: giving sister a Big Kiss♥

well Monday is tomorrow and the start of the big doses again she will be so sick after this and will probably go off her food again :( she will even go back into pull-ups for a few days as she hates having accidents, I wish there was more I could do to help her through this tough time, I have a fight to get her to take her sickness meds before we leave and we will be at the hospital tomorrow from 8am til unknown time (probably after 4pm) so little miss Robyn will also be full on. That reminds me must charge the portable DVD and change the leapster batteries as well as sort through my bag of goodies to make sure we have snacks she will eat and things to entertain them

 A beautifil Princess enjoying some fresh air before it rained

The Royal Children's in Brisbane is great though they have TV and games plus a great play area in the waiting room some children on the lighter chemo's get to sit out there, we don't get that chance due to the chemo she is on. the staff are wonderful and dealing with these special little people every day must be hard,

This week we also have to stop into Radiation for a Play session to get Miss Alex use to the routine that will start on the 10th, I will be dropping Miss Robyn into Care that day so it will just be Myself and Miss Alex going in, but on the 9th it will be Miss Alex and Miss Robyn for the last play session and then 20 days of Radiation with both, am glad we have worked out accommodation for me and the girls in Brisbane as traveling every day with car park and fuel would not be easy on the budget :S,

Miss Alex has a slight sniffle this morning and I am hoping its not the start of a cold, Miss Robyn is the same, Miss Alex decided 6am was a good time to get up today and now is annoying Daddy to play star wars lego on the Xbox, he is not happy but abliging her, ARGH think I spoke to soon now she wants Mummy lol, OK must go entertain the girls while they are still quiet will be back later with more

Protocol in motion

we are still waiting on the results to the biopsy but the protocol " Dactinomycin (Actinomycin-D, Cosmegen), Vincristine Sulphate and Doxorubicin (Adriamycim)" started on Monday 27+ weeks of chemo weekly with a week off occassionally and 4 weeks of 5 days straight for Radiation double strength that will start on the 10th on June,

we have had a planing visit Wednesday at the radiation place and Alex did well Robyn was a big pain though hehe typical 2 yr old hehe.

Big Chemo on Monday have sorted out so we have things to keep her happy as its over 4 hrs for 1 and there are 3 different ones being used that day Hubby will be with us and so will Miss R

Wednesday we have a play day with Radiation just to get her use to it all as if she moves they will end up sedating her and that will cause bigger issues for us, I am staying in Brissy with the girls while we do this and will be home on weekends as it will end up being to much $$ for us if I drive in every day. Miss Robyn will be an issue but she will have to learn we have to do this

on a good note Miss Robyn is Toilet training on her own accord I have no energy to push her so am just following her lead, she also sleeps most of the night in her own bed with out me big move from co-sleeping but I am still in the room with both girls I sleep with Miss Alex when she is unsettled and then with Miss Robyn when she gets upset.

new protocol

well here we are starting the next lot soon
today we see the Dr about the new protocol and we know already it will be double doses of Radiation in 2 weeks bouts and most likely will be the same chemo we had before " Dactinomycin (Actinomycin-D,Cosmegen), Vincristine Sulphate and Doxorubicin (Adriamycim)" this last one is the red devil and is given over 4 hours and sometimes with fluids before if Needed, 2 of the 3 make her quite sick but there is a chance that we will have to deal with 2 extras as well due to her tumor biopsy results, the tumor was also growing teeth and bone like the Dr told us cancer is stupid but this is something that will need watching as its more common in a different children's kidney cancer than wilms? so thats us waiting on the results on the Lymph nodes and hoping they are dead cells but what ever they will still follow the protocal as the cells can mutate and we want to get this over its just so hard for a mother to watch her child go through all this I still ponder at night if I did something wrong for her to suffer this :( ( sorry still hits me hard like it would any mother with a sick child not just with Cancer but anything really) I know i am only human Hubby is doing well at hiding his stress too but I do see it he tries so hard to be a man but this is his first born Daughter and it shows he is human and loves his daughters so much he did start alienating Miss Robyn but has come around to understand she is in the family and is also suffering like us all. most mornings he is throwing up with the stress,

Chemo & Surgery Road 09

well here we are following the Cancer Road with Miss Alex, she is doing well we were booked in for surgery on the 7th had last Chemo on the 30th April so on the 6th we went into the hospital for a check up ( I was worried as she had a cough that had been hanging around for weeks) they took bloods etc and said all was good so home we go to return the next day at 7am for admission and surgery.




Thursday the 7th we get up at 4.30am get the car packed as we are staying in Brisbane, 5.30am get the girls up and in the car, off we go get caught in traffic but arrive in time. do paper work for admission and then head up to the Surf ward to wait, the anaesthesist and surgeon drop by and well Alex's cough had now become a rattle in her chest so we get put into an isolation room til they get results back to say she is not contagious, we stayed in that room for 2 nights then got moved to the Oncology ward to finish the antibiotic's ( Alex had a reaction to the first lot ) on Monday we finally get told we can go home, so we get everything sorted to do it all again on the 13th and 14th,


14th comes and we are again up at 4.30am and ready to go no traffic issues this week and get there in time not long waiting either Alex goes down for surgery at 845am to Have the Nephrectomy ( Kidney removal) I take her in dressed in blues ( just like Hubby was when we had the C-sec for Alex ) she is asleep in seconds and I break down :( we decide to go get something to eat as we all skipped breaky with Miss Alex. it was a long wait and we took car to the Room miss Robyn and I would be staying at this time its Leonard lodge like last week, we then go back to the hospital and wait in the play area Hubby has a snooze ( sort of ) and I watch R play the surgeon arrives after 3-4 hrs in surgery with Miss Alex and fills us in on what happened " it was a tough job the tumor (Kidney) was huge and had hidden veins and they also had to remove it of the liver, these tumors like to stick to other organs etc, she lost the right kidney as this was the tumor the right adrenal gland and a small part of her liver. (Radical nephrectomy) they went after the Lymph Node tumors and well they had attached to the aorta(sp) and could not be removed as she would have bled out :'( this made me cry to think how close she was they did take biopsies so they can try to kill these cells off so she will be Cancer free? we then get told what may be the next stage ( chemo and radiation therapy ) its going to be a long road but as we are a family we will see it through. Miss Alex was in ICU for about an hr so we went and got room key and unpacked food from car etc then went back to see our beautiful princess waking up. she has a nice scar that is 4 inches long to what we can see under

Miss Alex Just after Surgery still out of it with tubes everywhere



She had tubes coming out all over and was beeping she was groggy for the rest of the day and they kept her this way to prevent her moving to much, Friday they got her up which we didn't think was possible but she was happy to be moving around and Saturday they removed the IV and catheter she could get up and go to the toilet on her own ( with us off course ) and go down to the play room we also got moved out of HDW to SURF room with 6 beds and nurses in there all the time, we had been told we could possibly go home on Sunday so was something to look forward too, We also had a Visit from an online friend (womby). Sunday morning was good Alex was her normal self Telling miss Robyn off hehe we also got moved again as our bed was needed for someone that needed watch 24/7 so to a 2 bed room we go, we didn't really get to stay long in this room as they let us go home :) Alex was ecstatic about that.

we have to go back on Thursday to see the Dr. about the new protocol and may get some biopsy results to. but its so good to be home again, know its a short lived thing as its an unpredictable time we have in-front of us but here's hoping the next 12 months we don't get to many more Hospital stays, we are now also looking at what to do for her 5th Birthday know it wont be much but hope its something special just for her (and me its my 40th as well )


added extra: I was under extra stress during the last week as My uncle has come down ill too ( My cousin Cheryl is like a sister and best friend in one) If we didn't have all this I would have been in SA to be with her and the family in this time, a heart attach and then possible diagnosis of Cancer too (lung) just hope they all know we are thinking of them

1st update on us in 09 & the Start of Alex's Cancer fight

well its been awhile since I came in here but a lot has happened too

1st we moved from NSW Hunter Valley to Queensland Ipswich area we arrived in our new place in Jan and well yes I am late updating this news, still getting use to it all, came here due to Hubbies work. I joined the local gym and was going daily 6 days a week and Miss Alex was going to the Pre-school next to it :) she loved it too.

In March Miss Alex started getting tummy aches and then I noticed a small lump under her right side rib-cage so we got into a local Dr that weekend this was the 22nd March. he checked her out and booked us in for an ultrasound the next day (Monday 23rd march) he said it looked like a tumor (lump ) on her liver and not to worry to much that it should be all good so off to the Ultra sound Monday morning we go and well we had to go back later as Miss Alex had to Fast :( Hubby was home that morning as work had him on late's so I took Miss Alex and Miss Robyn with me. we finally go in and the person doing the scan goes out to talk to the Dr. then the Dr. came in and said they would like to do a CT so this got me worrying they said they would call my referring Dr. and see what he thinks? no CT was done but they did do an X Ray so off we went back to the Dr's Surgery to see the Dr. about the results ( with only the scans in hand???)

well he was worried to I was stressing and the answer I got was to head straight into the Mater Hospital in Brisbane ASAP we sat with me fighting tears he said she will be fine it will be a long road but kids are strong and she is healthy as he wrote out a referral to the hospital, I was also told she would get sick before she got better.

The scans are of the Liver I had none of her Right Kidney but the X-Ray shows the liver up under her Ribs on the Right side

this Photo was taken on the 22nd March

I walked out of the Dr's and started back to the car while doing this I called home to see if Hubby was still there ( must have just missed him) so I called him at work and told him what was going on that I was about to head into the Mater Hospital, Hubby said Go Home first and Ill meet you there and would come with us ( so glad he did)

So Off to the Mater we go this is around lunch time no one has eaten I am stressed and thinking the worst ( Cancer of the liver) this is what the Dr. had hinted at we wait in the hospital waiting room for 5 Hrs before we get seen then she is very nice tells us its not the liver but they think its her Kidney and that we now have to go to the Royal Children's Hospital in Brisbane, they also gave us some sandwiches to eat as we had nothing so far while we waited on another letter for the head of oncology Dr Hassall., We also needed directions as we didn't know how to get to the RCH and needed a servo on the way ASAP, the Dr drew up a rough map that was good, we got there in about 30min, walked into emergency and was put straight into a bed no waiting this time due to the new letter. The Dr's in Emergency looked after us too while we waited on the new Dr to come down as he was busy but when he did he said we could not go home and that he thought Miss Alex Had a "Wilms Tumor (Nephroblastoma)"so was now waiting on a bed and we would be moved up to the wards then, so with in 24 hrs we went from a lump to cancer and it was a shock and so scary to think what my Baby girl was going to have to go through.

She was diagnosed with Nephroblastoma (Wilms Tumor) Stage 3 High risk as the lymph nodes had attached to the Aorta, we did get put up to stage 4 at the start due to small spots on the lungs but they dropped it back after surgery and we stayed on the same protocol for stage 4 stage she will have 3 different chemo's " Dactinomycin (Actinomycin-D, Cosmegen), Vincristine Sulphate and Doxorubicin (Adriamycim)" the last one is the RED Devil this is not a nice one and goes over 4+ hours,  we have been told no radiation at the start but after they found that it had spread yes to Double doses, Alex also had a spot on her lung but they watched it go quickly so we hope this is nothing as that would mean further spread and due to biopsy results this protical could be up to 5 chemo's
6 weeks of chemo then surgery back to weekly chemo of vincristine every week and every second week one or 2 off the others added, radiation was added in late June and we only had Vincristine over this time due to the effects and reactions that  Radiation and Dactinomycin (Actinomycin-D, Cosmegen) and Doxorubicin (Adriamycim) when mixed together

we spent 9 days in Hospital at this time with Miss Alex Having surgery for the first Biopsy and a port inserted ( like a central line but under the skin), CT and Ultrasounds plus Xrays etc, we got the results on the 27th of March and they started Chemo got home on the 1st of April of all days with a weekly protocol of Chemo every Thursday (DD4A regimen well sort of as the red devil was done over 4 hours here in Australia)  and Surgery to remove the Tumor (Right Kidney) on week 7 around Hubby's Birthday of all days the 7th May. will do a new post of the next part of our journey soon

these are taken at the hospital just as we find out we can go home so was a good day for us all

this Photo was taken about 2-3 weeks after we got home Hubby shaved his head and I did a No. 4 we also cut Miss A's hair to shoulder length to help with the hair loss.

Just want to say thank you to all the friends and Groups that have been supportive its so nice to see this in a time of need ( EB, SRC, Padre from DH work ETC Sorry if I missed a group)