Well it has been a while since we updated! a LONG while and i apologize. i remember back in October when I first started following a few blogs of people who were going through BMTs and hadn’t updated their blogs in a long while and I would get so mad. But I get it now why they didn’t, there is nothing to write about. Which you as a reader have to understand is such a good thing. When we were first admitted to hospital back in February to start Nadia’s chemo, we met with the dietitian. She said to us in the meeting, ‘you want boring, you want your life to be as boring as possible for the next year’ at first I didn’t really get it, I want Nadia to be normal, not boring! I get it now, boring is normal. It means life is just chugging along and there are no hick ups and set backs. Up to now, other than our painfully slow start, Nadia hasn’t had any hiccups. We dodged the Noro virus that decided to make an appearance for the first time in 15 yrs on the oncology ward at BCCH and so far (touch wood) have dodged other things like colds and flus. This is pretty much unheard of in a BMT patient’s life. Most patients will come down with some sort of virus or infection by this stage of the post BMT journey. Don’t get me wrong this could still happen, Nadia’s immune system is super fragile, if she does get something like a cold or a tummy bug it will take her out – she will most likely be sick longer than the average person and more than likely be hospitalized to be put on IV antibiotics to giver her a boost. Her entire immune system will ALL go to fight off whatever is attacking her leaving a wide open door for other viruses to come in and and start reeking havoc on her. Unlike an immune system of a ‘normal’ person where the immune system sends in a special forces team to kick the crap out of a particular virus or bug leaving the rest of your immune system to stand guard to fend off other bugs that try to infiltrate. Make sense? This is why we have been living a boring life. Limiting visitors, OCD hand washing, and living in a bubble. Her system needs to learn how to fight off bugs and germs. So, boring is what are life is at the moment. I know we can’t live like this forever and she will get sick, but the longer she is in her bubble the stronger her immune system will get so that it will be better able to fight off germs. It is also constantly on my mind of every minute of every day that a fever could spike. There is no way to shed this feeling, it hangs over you and you are constantly on high alert. It is exhausting, because you feel like if you let your guard down it will open up the highway of germs to your kid.
So our life right now is BORING. We get up, eat breakfast, watch some TV while mommy enjoys her morning coffee, play outside for a bit, eat lunch, nap, wake up, daddy comes home, play some more, eat supper, bath, play, bed time, repeat. This is what our day consists of, so really there has been nothing to write about. I could fill you in on her daily 2 yr old tantrums, but that would involve me reliving the moment where mommy almost looses her $hit. And nobody wants that. 😛
Perhaps I will write more when we start potty training it may be the thing that breaks me, god knows the temper tantrums have me on thin ice. HA!
Last Friday we got her blood work done and to say I didn’t cry like a baby would be lying. I had to ask our hematologist nurse to look at her neutriphil (anc) number again because I thought I was reading it wrong.
so here they all are in black and white for the ENTIRE Internet to see and read:
WBC 4.6 (normal range 5.6-15)
HgB 128 (normal range 105-135)
Platelets 277 (normal range 200-490)
ANC (neutriphils) 1.84 (normal range 1.5-8.5
If this was her report card it would read EXCEEDS EXPECTATIONS!! well I am pretty sure that is the grade her hematologist would give her and if not, I would be right in there arguing for a higher mark! 😛
as you can see her WBC is still shy of the normal range, but I’ll take it. Remember when it finally started to register and then just hung out there at 0.2 FOREVER?!?!?! It was like time stood still for 52 days. It is definitely hard thinking back to those days.
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Nadia enjoying her (thoroughly pre-screened for germs 😉 )
Nadia goes down a big slide without any help!
2 Responses to Day +126: ‘normal’ numbers and ‘boring’ life