Best birthday present ever!!

This afternoon just before 3pm.. wierdly enough around the same time we got the bad news.. We got the best news ever.. The results for our beautiful daughters bone marrow biopsy were back.. Our baby girl is cancer free :D and ready to go Off treatment. Freja has been in remission since day 31 of our cancer journey... And now almost 2 years later she is to stop taking the chemo tablets that have been helping to kill any residual cancer cells. The big day is the 21st February.. 2 years and one day after we started our cancer journey...

So very very happy.... yet our happy tears are mixed with sadness.... Our journey has been shared by many others... some are like us continuing their cancer journey, for others the journey was cut too short. Infant leukemia is a dreadful disease... we are so very blessed that our little girl was the one out of two that made it this far... sadly we know too many Infant leukemia angels... . Each of those angels has touched our hearts in a way that cannot be described... We will always remember them...

no answers

Sorry about the gap in updates... but been kinda busy with a whole range of things... We still haven't heard back about ds... we went to his 4 year vaccinations last week and our doc doesn't think we have to worry... easily said when it's not your child... He is still very very tired.. complains about pains in his legs ..... we've started him up on an iron vitamin mixture to see if that helps.... so far no result... We have an appt with dd's oncologist in 14 days... so we are waiting to see if the iron helps or not.. if not we will take ds with us and ask our oncs advice.
Other things that are happening here... dd had pigtails in her hair for the first time ever... sounds ludicrous but this actually means alot to me her mom... She was ecstatic... dancing around ... so very proud... wonderful to see.. For those that know me personally i have her pics on my fb.
Tomorrow we are going to take the kids to legoland... and pretend to be a normal family... i love these days out when you get to pretend that nothing has gone wrong and we are a normal family...

Stresses these past 14 days have been based on the fact that our caseworker wants me to return to work... despite the fact that our onc has written clearly that it is in DD's best interest if i continue to have leave... due to the high risk of infection and the fact that dd has not finished her vaccinations... My head is in turmoil.. i work in a hospital.... in hospitals there are sick people... sick people with nasty germs.... and i am dreading the possibility of me transmittin some of those yucky germs to dd... not intentionally of course but half the time we are notified of the nasty infectious diseases after the effect... hence i at 5 months pregnant came in to contact with a patient with meningitis... and another with chicken pox.... when i was pregnant with dd.... the fear then about what if i transmitted it to the baby... is not a 10th of how i feel about transmitting a disease to my immunosurpressed child...

anyway it's now time to go to bed to get ready for a fun day out tomorrow..
g'night

Still waiting and going slightly crazy

We still haven't heard back from the hospital about ds's tests.... It's driving me mental... Doesn't help that my mommy instinct is twitching that there is something totally not right with ds at the moment... He's still so tearful and so not himself... Please god let him feel better real soon...
I guess some of how i am feeling isn't helped by the fact that i am going to another funeral tomorrow.. Another child that never got to live a long life.. The little girl involved got her angel wings last saturday after fighting for 3 of her 4 years agains the devil that is cancer... Tomorrow we say our farewells.... I know that i will fall apart when i see the smallness of her coffin... It is just so wrong... how can this happen... why do children have to go.... I really really really hate CANCER....

Happy birthday darling boy....

I should have posted this yesterday.... DS turned 4... 4 wonderful years of being his mom... i am blessed. The reason it wasn't posted yesterday is simple.. I was celebrating my sons birthday.. and what a day it was... We woke early... and went to collect the cake... ds was ecstatic about that... it was huge!! Then at 10am 22 children from his kindergarten came to visit... omg what fun. DD had a fabulous time too interacting with all those mmr vaccinated children... yeay what a day.. And daddy came home early too.. whooopeee.. When the kindergarten kids had gone home we had a wonderful afternoon... building lego... and i only had to remind dh two times that the whole point of building with lego is that i can be broken down and rebuilt... what is it with men that they seem to think you build it once and then have to play with it.. I also had to remind him that it was ds's present and not his ... lol.. typical man..
Today was a bonus day for me.. I got to go out for the day... DH was home and watched dd.. it was so nice.. i went past my workplace (i'm on long term leave due to dd illness) and then i went to a nice cafe and had lunch... oh and i joined a gym!!
so thats my update for now.. it's bedtime..

He's home

Well dh and ds came home from the hospital... basically they have no idea what's wrong and are waiting for blood cultures to tell them. If he gets worse again we have to call them and take him back.. Right now he is sitting watching tv and eating popcorn... it' a hard life...

Life is so precious

Yesterday was a really sucky day... I woke up to news that a forum friend had lost her long awaited baby girl at 26 weeks. And whilst still reeling from that news I got word that one of our cancer friends became an angel yesterday. Thank you lord for letting princess Caroline find peace in her mothers arms. It was just way too soon. 4 years old... The drama didn't stop there...
Ds has been a bit off the past week... not really eating that well and generally being a bit "clingy". On Friday he had a slight temp... 38C but yesterday evening it reached 38.9 and he was lying on the couch and getting his little sister to get things for him... he wasn't feeling well and when asked he said he had pain in his back/sides and in his bladder region... Thinking uti we took him to the doctor... with a very nicely caught specimen of his wee.. True enough according to the oncall doc she could find blood, nitrates and white cells in it... so we got referred to the local childrens hospital. When we got there .. they took the same wee and tested it and said it was clean... hmmm. On our request they took a blood sample.. but they didn't think he was sick enough to warrent staying so we got sent home with the info that they would call us with the blood result.
We got home put the kids to bed and 10mins later a sheepish doc rang to say that ds's Crp (infection numbers) were 156 which indicates a bacterial infection and that his white cell count was 18 (high. Enter panic mode... as a mother to a child with Leukemia... I know what these numbers could mean.. Anyways... they wanted him back asap... so dh ended up driving back with him... I got to stay home with dd... and how horrible is that feeling.. to be sitting at home waiting... waiting for the phone to ring... and it doesn't....
Ds is still there with his daddy... i have spoken to him this morning and he says he is fine.. but we've learnt that he says things so that he can come home... He doesn't want to be there either... he wants to be at home with mommy and his lil sister getting ready for his birthday tomorrow..

I want him here too... but i also want him well and that is most important..