We finally got her released Monday afternoon (we were told Noon, but you know how slow hospitals are to release) and we’ve been holed up at home together since.
It’s so refreshing to have her home again. We made a promise to let her “be” without interruptions or pressure. She’s been poked, prodded, woken and forced to do things for 7 months and we let her have peace and she’s loving it! Of course, we kiss and hug her every chance we get!
She was scheduled to get a bone marrow biopsy Friday to determine if the cancer truly is gone, but her platelets were still too low, so it’s being rescheduled soon and we should have an answer to that impending question after the test is complete.
We’ve been asked by several people when she will return to school and our answer to that is: We don’t know. Danielle is still very weak, has low platelets and tires easily. We may try home tutoring for a bit before she returns. We were thinking of easing her in slowly once she does return-perhaps trying two hours a day, three days a week at the beginning until we get her on a full schedule once again, but I can’t see that happening until after the first of the year.
Needless to say we are beyond happy to have our baby girl home with us once again!!
I’m very happy to report that we should be going home early next week, hoping for Monday. They are lowering steroids and taking her off the calories in her IV. Even changing her daily medication from IV to pills.
The last two days we’ve been walking around the hospital, actually out of the ward. She kind of sprinted out the door. Lots of breaks, but she’s doing great!
It’s so good to see the silly Danielle again (and patty)
Danielle has very crackly wet lungs and so they checked her heart output and it has decreased since they checked it last…this can be an issue for people who go through AML, so they brought in the cardiologists and they are watching her closely. So we have a team of doctors monitoring her cancer, a team of doctors monitoring any infectious diseases she may have (i.e. fungus and such) and now a team of cardiologists….i’m thinking we may need to bring in some mental health officials soon to start pumping ALL of us with some happy drugs, but we barely have time to pee anymore with everyone marching through this hospital room.
NOW…They are talking about moving us to a larger room, which is causing mixed emotions. We think “yeah a bigger room, more room to move and for all these doctors to stand further away and not be rubbing elbows with us every time they come in”…then we think “wait a second, people who are leaving soon don’t need to move into a new room and dirty it up!” that’s not a good sign that they are interested NOW, after six months here, of making us more comfortable! Not feeling good about this at all…
On another note, Grumpy Cat was here in Beaverton/Portland area on Wednesday and i’m praying they get my messages and bring her to Doernbechers to meet Danielle. Its a LONG shot, but you never know, you have to at least try right? See my Facebook posts and share with all your friends please to get the message out there to someone who may have some influence in the Grumpy Cat World!!! https://www.facebook.com/Mischievous1
Danielle’s numbers (White blood cell, ANC and hemoglobin) are all slowly starting to climb, which is promising. They have her on a very heavy antibiotic and anti-fungal medication and she feels very sick and hasn’t eaten in quite some time. She drank two Slurpee’s yesterday though (she ended up losing them after the second, it was just a bit much) and ate two grapes for Grandma Sandi this weekend, so when I say she isn’t eating – I mean, she isn’t eating much, but sometimes will sample “food” again to decide it just isn’t for her.
She sleeps a lot, she looks very pale and has circles around her eyes, but every once in awhile she perks up like the old days and makes goofy faces, gets out of bed for a few minutes and sits up. She wears out easily though and finds her way back to bed quite quickly.
Keep on praying for her to get better and come home, we really need to our baby girl home with us.
I was brought up to believe that if you didn’t have anything nice to say, you don’t say anything at all and right now there is nothing new or positive to report. Danielle is in a bad place emotionally right now. She’s been fighting off this cough for weeks, she’s still in isolation, so can’t leave her room. She won’t even get out of bed. She’s lethargic and can’t even form cohesive sentences…why? We DON’T know….maybe its lack of will. Maybe she’s sicker than they think, but they can’t FIND anything!
We can’t take her home because her numbers aren’t high enough and she isn’t getting better (maybe because she’s just DONE and has no will to open her eyes another day to her hospital prison).
She’s lost 15 pounds and won’t eat. They have her on IV fluids now as she is wasting away. She is a terrible gray color and her face is gaunt and I am so pissed off, I can’t even talk about it.
People have been asking why we aren’t posting well that is why. I pray i’ll have something nicer to say soon. Love you.
This is a photo I took of her today, she wouldn’t even make me a goofy face. It breaks my heart.
Danielle has had a cough for the past week and we were hopeful it was just her dust allergies, but it has blown into a full blown cold – which was confirmed by tests (rhinovirus) and has moved into her lungs.
She was taken for a CT Scan today and they found an infection in her right lung and are prepping her for a bronchial test where they go down into her lungs with a camera and take a sample of the fluid while they are there to test for fungus.
This is a major set back and as you can imagine we are quite upset and worried. I have been fighting pneumonia for the past few weeks and Bill is beyond exhausted, but we are fighting the good fight.
Thanks for keeping us in your thoughts and prayers.
To the goofiest 11 year old I know! Happy Birthday. May all your dreams come true (if it’s going home from the hospital today, sorry but your “dreams” need to wait until your numbers are UP) and the most kindest hearted person I’ve ever met-and I know ALOT of people!
You are a true miracle, the child who changed my life for the better, the one who gave me hope and reason to get up each morning, even on those days I didn’t want to. The only doll I got to dress up and make pretty each morning and enjoyed doing so – haha, I knew you’d love to hear that. You still are and always will be my Favorite Daughter!!
This is starting to take a toll on us and it’s showing by the fact that we are getting sick. It all started with the sniffles, then coughing. Devon and I have been sofa surfing together the past couple days which puts the entire burden of the hospital on Bill. He’s handling it very well, Danielle is very blessed to have such an incredible father, but I need to get better to relieve him so he can sleep in his own bed soon.
I’ve been worrying all day (I know that’s wasted energy but it’s hard not to) that Danielle was exposed to this creeping crud that we are fighting off before we knew we were sick. Bill said she’s coughed a few times and for her to get sick right now – is extremely bad! Please gather your positive energy and prayers for our little girl and for her to come home to us soon.