i used to be scared of this disease.

its true. when evan was diagnosed with hemophilia, i really fell apart inside. my emotions took over and i cried what felt like nonstop for days. i was confused and terrified of the unknown. the only thing i had ever heard about hemophilia was when i was a kid and watching the made for tv movie about ryan white. yep, that ryan white...the young boy who died of aids. my stomach turned. my mind raced. what was happening? why is it happening? was this karmic justice for something i had done? something i hadn't done?

the first few months of e's life are recalled in my mind as a rollercoaster of emotion. i remember the first time i took him to st. joe's to talk with sara about hemophilia. he was eight days old. she bombarded me with books and pamphlets that i didn't want to face. i didn't want to read them. i didn't want him to have this. i wanted to hide from it. i remember leaving that appointment with my eight pound baby and driving over to my mom's house so my aunt from virginia could meet him. we listened to coldplay lullaby music and i sobbed while trying to navigate the roads.

and then, one day i found a bruise. for no reason. it was just there. a big one that seemed to eat up half of his arm. it looked enormous on this little creature. i remember staring at it and just looking and feeling it. i cried. i was scared. and when i composed myself, i remember looking at my son who was nursing and oblivious to what i was feeling and thinking "wait a minute, this is him...this isn't me." and i stopped.

i changed my view. i had to. i could let this affect him in the negative way it was affecting me, or i could learn to embrace it and teach him the same.

so thats what i did.

and you know, barring a three month period of absolute fear and multiple hospital stays, i think i have done a good job.

and as i look at him today, i know he is going to be alright. he's a fearless two year old that happens to have blood that doesn't want to cooperate sometimes. he's an amazing child who doesn't even notice that he's getting a needle stuck in his chest three days a week. he is an amazing person that wants to play and learn and explore. he teaches me so much. he reminds me that life is good. he allows me to remember that we can learn to adapt and live with things instead of lamenting them.

evan is a totally amazing little boy. he will grow up to be an even more amazing man. i just know he will. and i think he will teach many people along the way how to embrace the unknown and have compassion for others that just happen to be a little different. and remind them that different isn't scary. and at this moment, and probably most importantly, he has taught me that there is no reason to keep being afraid.

i've cancelled my hiatus.

okay, so i wasn't gone on purpose...i think i just got super lazy? ok, maybe i didn't do that either. you see, my original purpose for starting this blog was to document what we were going through with e's disease and share with others how we handle things and where my head, as a mother through all of this insanity, is at. thankfully, we have had a pretty easy go of things this past year and there hasn't been too terribly much to report.

i suppose one item to note to other parents out there is that we did get through seasonal illness without a hospital stay. twice. i decided to meet with one of the four hemotologists in the practice and plead my case about my knowledge and ability to care for and access e's port. and that if there were a cold this season, which there inevitably would be, that i would be more than happy to treat him at home until we were sure that there were an infection in his port that would mandate a hospital stay. i had the full backing of the head hemo nurse sara, and it was decided that i could handle this stuff at home if we should need to. and i did. twice. e had two horrid colds this past december and none of them landed us in the hospital. and thank whoever you believe in for that, because the first fever lasted eight days. it would have been miserable in there for over a week.

we are still on prophy treatment, but have gone back to a monday/wednesday/friday dosing schedule. e had some bloodwork right after the first of the year and his levels seem to have elevated back to the 5% range. nobody seems to know why his levels have fluxuated so much, but we are certianly pleased to see his levels close to where they were during his first six months of life.

i intend to update more often (shout out to allison for kicking my ass into writing), even if the original intention of this site may have to shift to keep up with the frequency.

the calm before the storm?

i realise this is pre-emptive worry, but i wouldn't really be me if i weren't worrying for nothing about something. so, cold and flu season is almost here. it's a real bitch by itself, but throw in a kid with a port and it becomes a raging one. so i find myself trying to enjoy the days of playing outside and sending him to the gym daycare with the other children before i find myself wrapping us all up into a plastic bubble so that we aren't living out of st. joe's this winter with small fevers that hopefully haven't turned in to port infections.

i have decided that i am going to be a bit more commanding about this, though. i spoke with kathy (a nurse from hoss) about the possibility of doing the first 48 hours of antibiotics at home while we waited for cultures to come back. for non-hemo parents, this would be the first 48 hours you are mandated to stay in the hospital at the first sign of a fever (which, i should tell you is only allowed to get to 100.5...oh yeah, and you can't leave until you are fever free for 24 hours). she said that, while it is up to the doctors in your practice, it is not unheard of to allow parents to administer these antibiotics at home while you wait for the cultures to come back. so i am going to try and strong arm the doctors to follow this plan with me. but i am going to go in ahead of time and try to sweet talk them first (are you reading this, sara!?!). i figure, if i am capable enough to stick a needle into my son's chest every other day then i am more than capable of keeping it in there (with the biopatch on) and hooking up some antibiotics every 8 hours. i would even push it slowly over 30 minutes if they were unable to lend me a machine. i would also promise not to bathe him or allow him to run around like a wild beast with a needle sticking out of his chest.

you see, it's not that i don't appreciate the doctor's perspective. i do. truly. however, something i learned last year when we were in and out of the hospital three times over two months, i realised that noah gets pushed to the side. and while he would never begrudge his brother the attention, devotion and care he needs from his parents, it definitely wears on him. he worries for his brother. he misses his mom and dad. he misses being home. and being without him for so long...not being able to show him attention and affection daily like i would if i were home is really trying. and one thing i am trying so hard to do with this disease is to keep things as normal as possible. for everyone...evan, noah, michael, and myself.

who knows, though...maybe i need to redefine normal.

sometimes i forget i am here.

well, i mean...i forget that i have this place. i don't know if thats a good or bad thing. on the good side, it means that things with e have been good. nothing really to report other than we are still doing prophy three days a week. it still feels emotionally taxing at times. sticking your kid with a needle has come to be the easy part. its the mixing and the thoughts that swirl around in my brain while i am getting things ready that are tough. its a constant reminder that my idealistic thoughts of parenthood with regard to him will always remain just that...idealistic. and really, i didn't have any delusions of grandeur or anything. i just never imagined having a child with a chronic illness. my therapist referred to the situation once as me having a "sick child." and while i never use this term, the conversation stuck with me. he is sick. he will always be sick. nothing, well now anyway, will change it. and it sucks. it makes me mad. it makes me cry. and most of all, it makes me wish there was something i could do to change it. not just for him and our family, but for every family that suffers from this little known illness. it doesn't get the same sort of press as cancer or hiv or diabetes. but it is just as taxing and scary. i find myself worrying all the time if he is bleeding and i don't know it, or if some parental decision that we make will be the right one. the constant worry and second guessing is so trying. and i am not the most patient person in the world.

on the bad side, my not being here makes me feel like i have alienated a population of people that regularly check in on this site. its weird to me that people from all over check this place out...as far as europe and asia. and my lack of updating reminds me that there may be moms and dads suffering from the same anxiety that i suffer from, with nobody that truly understands it. when e was first diagnosed i wanted nothing more than to quietly separate my thoughts and know that i wasn't alone in my fears and frustrations. and i wanted someone to tell me that everything would be alright. and while i cannot promise that...because, really, who can...i feel like i can offer some sort of relief in knowing that doing the best you can will yield good results.

and, while i am at it, i should say to all you other parents facing the same sort of obstacles that we are...if you ever need to talk. or cry. or vent. i would totally be willing to listen.

hey! help a hemo out =)

so, our spring walk for bleeding disorders is coming up at the end of next month. my goal this year is $3000. i know it sounds like a lot, and its such a strange time to be giving any money away, but the hemophilia foundation does such great things for families and research and any amount that you can give to help out would mean the world. so, if you want to donate you can here. i promise you'll feel good about where your money is going!

our son, the medical anamoly.

so we got e's blood results back from his lab draw this week. first, his factor level was above 1% after 72 hours which i am told is what they want to see. so, yay. the two tests he got (the lupus anticoagulant and the mono test) were hopefully going to solve the mystery of the decreasing factor level. but...its not to be. both tests came back negative.

so. back to the drawing board.

currently, evan is under the care of the oldest doctor in the practice (i'm going to guess he's about 70?) and sara (the nurse, not me) said that he told her he has never seen this before. i assume he means the levels decreasing, a positive test for an inhibitor and no medical explanation.

it was decided that we would try immuno-supression for the week. i gave him his regular 1250 friday dose, and will be infusing him with 1000 units every day for the next seven days. that puts us out to next saturday. then the following monday i will take him back to st. joe's where they will draw more pre-infusion blood and do the mixing study again to see if he still comes back positive for an inhibitor.

michael and i are thinking that if he does come back positive for the inhibitor that we are going to consult a second opinion. i feel weird saying that, because i love the practice that we go to. and i love sara so much too. and i hope this sort of thing wouldn't hurt their feelings, but i feel like maybe we need to see if someone else can help us solve this mystery.

poor boy is only 21 months old and i already long for the days of the 5.9% levels.

i've never been a fan of speculation

and i have come to find that so much of medicine is just that. speculation. and waiting. one of the doctor's in e's hemotology practice brought it to our attention that if his levels have been decreasing that there has to be something going on...even if he has consistently tested negative for inhibitors. so i took him for some bloodwork a couple of weeks ago where we drew blood for a mixing study. i say we drew blood because i drew it from his port. it is so weird how i am now capable of doing small medical procedures for my child that i never dreamed i would be responsible for.

anyway, the mixing study results came back positive for some sort of inhibitor activity. or, at least, i think that's what they said. there is so much that i don't understand right away and i tend to get my facts confused.

so, back to the lab tomorrow. for more bloodwork. this time it is not to be drawn from the port. they are going to run tests to see if evan is positive for a lupus anticoagulant or if he has been exposed to the mono virus. both of these things, i have been told, can affect his factor levels in a natural way. i was also explained what they were (the short, peripheral-hemophilia-additives-for-dummies version) and we are hoping that the results show that he is positive for the lupus anticoagulant. the reason for this is that there is a possibility for the body to correct itself on its own and for his levels to go back up into the moderate (or maybe back up into the mild) range. it wouldn't be a definite, but a maybe. and that's always better than a no. if he is found to have been exposed to the mono virus, then it is a definite no-way-in-hell can his levels ever go back up to where they once were.

and you know, i feel so many times like i have a handle on the tension of this disease. and then we go looking at stuff like this and i realise that i don't. even though this isn't a life or death kind of situation, it delivers stress through my body just the same. and often times that stress leads to anger, which i try so hard to fight because its sort of a wasted emotion in terms of this disease. at this stage in the game, anyway. plus, who do i even get mad at? myself? my child? some spirit that may or may not exist? nature? science?

i guess i try to steer my mind in a new direction. a direction that is more positive for everyone. and i think about the lovely people...people that i dont even know...that are working their asses off to figure out how to cure this shit. and i smile at the thought of them. and wish there was something i could do to help. and i can't wait for the day when e's disease is cured. because hopefully i will be alive and able to hug and kiss these people and let them know just how thankful i am.

but for now, i guess i'll just keep going about my life of remembering anti-seizure meds twice a day, making sure the helmet is always on, accessing ports, and packing up a bag full of medicine and needles that would make a day clinic look like an amusement park.