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.