I'll let ya'll know first off that since this is the interwebz, I'm going to change names (except mine)... you know, to protect peoples identies, and all that jazz (and because my parents are paranoid about it, so... yeah). Anyway, I'm Mercedes, and this blog is to chronicle my journey through life - mostly motherhood and dealing with my dad's cancer.
I'm married to a brit (we'll call him Glen), and we have two absolutely gorgeous little girls (yes, I'm biased. I'm allowed, so there :P). My oldest, McKenzie, is currently about 17 1/2 months old. And my youngest, Emily, is not quite 4 months. If anybody from the mommy forums I'm on read this, these are actually their names... their THIRD names... so please don't post their first names on here! McKenzie's a pretty active lil toddler, and she's into EVERYTHING!! She drives me crazy sometimes, but she flashes that cheeky grin of hers, and I just love her all the more. Emily's a very vocal lil 4 month old. She "talks" to us a lot. I sometimes feel she's behind in physical development, though, since I'm almost always holding her. This isn't my intention, but she's constantly nursing, and wakes up when she's not in my lap (and yes, she's in my lap right now...). I'm hoping she'll let me put her down more in the next few months...
Now one thing that you need to know - Glen, the girls and I all live with my parents (we'll call them Reggie and Jessica) in this small lil 3 bedroom house that we rent. If it were just Glen the girls and I, this house would have lots of room. Two of the 3 bedrooms are HUGE, and the third bedroom is pretty small, but works as a nursery.. for now. And it's got a finished basement. But with 4 adults, a toddler and a baby, and a crapload of stuff... just a wee bit cramped. We're in each others' faces a lot, and we can get pretty loud at times.
So back around New Years, we got some news that totally rocked our world... Dad has cancer. And not the get some radiation treatments, have surgery, get a transplant, go into remission and hope it never comes back type of cancer... he has the non-curable terminal kind with a life expectancy of 3 - 5 years in stage 1 patients... and he's in stage 2 - 3. Great. He has what's called myelofibrosis. It's not super-common, either.. like 1000 people out of the entire population of the United States gets it. Does anyone know the population of the US? I don't.. but I'm Canadian. But let's just say it's rare, anyway. And when I say "non-curable" let me put it this way - the only known "cure" is to get a bone marrow transplant. Well, there's a cure, then, you say, right? Wrong. This only makes the cancer "cured" in about 10% of the patients who get it done. Another 40% about break even after having it done. The other 50% have so many problems from the severe doses of radiation they're exposed to pre-transplant that they're actually worse off than before the transplant, or they die. So really it's a 50/50 chance of being any better, and frankly, we're not willing to risk Dad's life on the toss of a coin, know what I mean? So our remaining options were: do nothing, and just get blood transfusions every 1 - 2 weeks, depending on his blood levels, or go through a clinical trial study with a gene blocking drug, and still get the blood transfusions as needed. We opted for the clinical trial study.
Dad started the study on the first of March. This is nearly unheard of to get a diagnosis and then be in a study within 2 months, but it happened! Good timing. Surprisingly, since he started the drug, his levels have been stabilizing pretty well! He actually went 3 weeks without getting a transfusion after starting it. Before he was getting one every one to two weeks! Progress! We're hoping that he continues to improve. Now let me point out one thing with this drug - this is NOT A CURE!! They say that the drug will only possibly extend his life by another 1 - 5 years. So remember when I said 3 - 5 years in a stage 1 patient? We're topping out at 10 years now. And he has stage 2 - 3... so I guess maybe we're topping out at 7.5 years? I don't know how the stages chop down life expectancy, really. But that's sort of besides the point.
Mom and I have really been talking with Dad lately about his "bucket list"... a list of things he would like to do before he dies. So here's what we know are on his bucket list so far:
Travel to the east coast and drive along the Cabot Trail (that's in Nova Scotia, Canada)
Travel to the west coast
Go to the West Indies Islands (this one was a surprise to me!)
We also talked about going in a plane.. my cousin's a pilot, so this one may actually be doable, but not the plane he was mentioning... he'd LOVE to go up in a CF5, but then he mentioned it blows through $1000 in fuel an hour, and it goes 400mph... my cousin suggested a 172 that goes 125knots per hour. LOL! Poor Dad won't get his dream flight, but that'd still be pretty cool, I think.
And we talked about Dad and Glen going to Mossport sometime (which is a race track not too far away)
Sounds totally doable, right? Welllllllllllll, not so much. I'm on maternity leave, which pays crap. DH's on a job that barely pays more than minimum wage, and is a temp position, so who knows how long that'll last, and mom's on unemployment, which pays about $50 every two weeks less than my mat leave gets, so again... crap. Dad's job is the only real "paying" job, and he's been losing out on a lot of working days thanks to a lot of doctors appointments, so our income's been axed pretty brutally. So the only thing we may be able to pull off is a huge wedding anniversary party (which Mom and I are planning) this year, and the east coast trip next year. Honestly, I'd love to make the west coast or west indies trip a family trip in 2 years, but who knows if that's going to happen. I figure it'll cost around $8k for all of us to go and have a good time. *sigh* Who knows what the future holds in store, right? I mean, I never expected to be told that Dad has blood/bone marrow cancer, and that's happened... and I never expected to have 2 girls so close together, and that's happened, too. But c'est la vie!
Anyways, it's pretty late (almost midnight!) and lil Emily needs her acid reflux meds, so I'm going to log off and get to bed.
Good night interwebz!
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