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....
Thursday, September 24, 2009
Tuesday, September 22, 2009
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..
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..
Sunday, September 20, 2009
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..
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..
Friday, September 18, 2009
Starting again...
As those of you that have followed my previous blog... all 4 posts.. you may have noticed that i was particularly dreadful at writing.. This is partly due to the summer and being a busy mother to 2 children..
I am making the effort again...
I'll start with an Intro..
My name is Jane... I am married to dh and have been for almost 6 years (wow it doesn't feel that long). We have 2 beautiful children a boy of almost 4 and a little girl that has not long turned 2. The "ideal" family.... well that's how it may seem on the surface...
We are also a family that is missing 3 members.... 3 angels that left us. Our first angel came as a shock... I didn't even know i was pregnant... (how can that be i hear you say). Quite simply i was pp from ds and got pregnant before i became aware i was fertile again... oops... How did i find out i was pregnant... I started bleeding... and i bled and bled and bled.. and being a naiive pp firsttime mother i assumed that this was what happened when AF finally showed up.... how wrong i was..... Dh found me passed out in a pool of blood... I had a "late" mc... a baby that i didn't know about... a baby that i never got the chance to love.... and that really hurts. If you knew me irl you would know how much i love my babies when i'm pregnant... they are loved from the moment i can see the second line... probably even before :D
We were overjoyed when a few short months later we saw those 2 lines again.... due to the previous loss i was scanned early in the pregnancy and we were elated to see not one but 2 little tiny blobs with tiny flickering hearts... And equally devastated when a few short weeks later i bled again... and we said goodbye to two more angels.
Devastated would describe me in the weeks after that... torn apart.. in limbo... We decided to put a hold on increasing our family... we had a case of the what if's... what if there was a reason that i couldn't carry them... what if there was a congenital problem.... Our doctor sent "sample" (what a cold word) for pathological investigation... If there was something to find we would know...
Mother nature had other ideas... and despite being really careful and following all the rules of tta.... i concieved our rainbow baby... 8 weeks later. DD was definitely concieved out of love... i think dh and i were clinging to each other at that time.. we hurt so hard... 9 months of sheer terror later I delivered our beautiful daughter at a fantastic 9lbs1oz. Our joy was complete... we could put the sadness of our lost angels behind us and focus on the future... or so we thought...
Dd developed (thank goodness) a rather bad milk allergy at the age of 2 months.. which warrented a trip to the allergy specialist and dietician when she turned 6 months (exclusive nursing on a milk free diet until then). Why am i so pleased that our dd had a milk allergy.. because without that we probably wouldn't have her now... An incidental finding on a blood test at 7 months of age revealled that our daughter had Infant Acute lymphocytic leukemia with MLL gene rearrangement (4:11). Our baby had cancer.
This past 18 months have been hell on earth... I have seen my little girl go through things i wouldn't wish on my worst enemy... But i have also seen her fighting spirit and watched how she just enjoys life.. taking every day as it comes and living it to the full.. I could learn alot from watching her.
So that is how our "ideal" family is.... on the surface we look happy and content... but underneath.... there is turbulence... sadness...
I am making the effort again...
I'll start with an Intro..
My name is Jane... I am married to dh and have been for almost 6 years (wow it doesn't feel that long). We have 2 beautiful children a boy of almost 4 and a little girl that has not long turned 2. The "ideal" family.... well that's how it may seem on the surface...
We are also a family that is missing 3 members.... 3 angels that left us. Our first angel came as a shock... I didn't even know i was pregnant... (how can that be i hear you say). Quite simply i was pp from ds and got pregnant before i became aware i was fertile again... oops... How did i find out i was pregnant... I started bleeding... and i bled and bled and bled.. and being a naiive pp firsttime mother i assumed that this was what happened when AF finally showed up.... how wrong i was..... Dh found me passed out in a pool of blood... I had a "late" mc... a baby that i didn't know about... a baby that i never got the chance to love.... and that really hurts. If you knew me irl you would know how much i love my babies when i'm pregnant... they are loved from the moment i can see the second line... probably even before :D
We were overjoyed when a few short months later we saw those 2 lines again.... due to the previous loss i was scanned early in the pregnancy and we were elated to see not one but 2 little tiny blobs with tiny flickering hearts... And equally devastated when a few short weeks later i bled again... and we said goodbye to two more angels.
Devastated would describe me in the weeks after that... torn apart.. in limbo... We decided to put a hold on increasing our family... we had a case of the what if's... what if there was a reason that i couldn't carry them... what if there was a congenital problem.... Our doctor sent "sample" (what a cold word) for pathological investigation... If there was something to find we would know...
Mother nature had other ideas... and despite being really careful and following all the rules of tta.... i concieved our rainbow baby... 8 weeks later. DD was definitely concieved out of love... i think dh and i were clinging to each other at that time.. we hurt so hard... 9 months of sheer terror later I delivered our beautiful daughter at a fantastic 9lbs1oz. Our joy was complete... we could put the sadness of our lost angels behind us and focus on the future... or so we thought...
Dd developed (thank goodness) a rather bad milk allergy at the age of 2 months.. which warrented a trip to the allergy specialist and dietician when she turned 6 months (exclusive nursing on a milk free diet until then). Why am i so pleased that our dd had a milk allergy.. because without that we probably wouldn't have her now... An incidental finding on a blood test at 7 months of age revealled that our daughter had Infant Acute lymphocytic leukemia with MLL gene rearrangement (4:11). Our baby had cancer.
This past 18 months have been hell on earth... I have seen my little girl go through things i wouldn't wish on my worst enemy... But i have also seen her fighting spirit and watched how she just enjoys life.. taking every day as it comes and living it to the full.. I could learn alot from watching her.
So that is how our "ideal" family is.... on the surface we look happy and content... but underneath.... there is turbulence... sadness...
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