When we went in for the spinal tap/ test, we found her hemoglobin was down to 7.1 ( that’s really low). So we added a pint of red yesterday and another refill to day! She’s in great spirits and looking forward to the 4th with family.
And looking forward ward to week out of the hospital!!
Guess who just escaped the hospital for a week? ONE GUESS…c’mon I know you can get this…just in case here’s a pic that the paparazzi just snapped out front of Doernbecher’s Hospital of a client waiting for their car….
So her CT came back showing there’s nothing to worry about, which is very good, but I still worry…as do most parents.
Danielle received a visit (and exam) by the infectious disease Doctor (wow, I wonder what her parents thought when she told them that would be her job?) and she could find nothing physically wrong with Danielle, but she did ask me “is she special” to which I replied…”please elaborate” as Danielle is feeling like her old crazy self and was making creepy faces and weird noises while she was being examined!
So now we wait….
Heading into her CT Scan at 9pm last night
Then tonight, no fever, happy and beautiful as can be.
Things have been sailing quite smoothly for this session, so we should have seen it coming…but we didn’t.
Danielle developed a fever yesterday. They aren’t sure what’s causing it, but there’s some concern. She still has it. She’s having chills and feels tired, which worries us. She has lost 2 lbs in the last day, this is not something we want to see right now.
Then she’ll get a rush of energy, get out of bed for 10 minutes and be fine, just to return to bed freezing cold and she doesn’t even have the energy to open her laptop or turn the tv on. She just lies there. It makes her dad and I scared.
The hospital is planning on doing a CT scan on her very soon to be sure there isn’t any infections in her lungs, sinus or liver.
I feel guilty because her dad and I look forward to the weekends when we can get help, this weekend we couldn’t find anyone to stay with her and we were disappointed. Then this happened and there’s no way we would leave her now, but still I feel very guilty and selfish.
Let’s all pray this blows over quickly and she still makes it home in time for the 4th of July, which she really wants!!
Here are some pics…they are kind of funny because they go from awful, to better to just fine and then repeat, and then repeat. Kids are amazing!!
Then Dad sends me this pic once I get home….So as you can see, we don’t want to alarm anyone, we’re just sharing what is happening. She’s sick, then she’s fine! Tomorrow will tell if she’s pulling out of it…I think she will!!!!
I just went to the family kitchen, Danielle wanted a second helping of my homemade spaghetti and I told her she needs to get this one herself…I realized I’ve been coddling her like an infant and getting up and moving as much as possible is in her best interest. Anyway, I went along to the kitchen with her and a small, young woman came in while we were there. She looked tired and I didn’t recognize her. Danielle got her food and I lingered to get a sparkling water once the lady was finished preparing a cup of coffee.
After Danielle walked out she turned to me and asked “is that your daughter?” and I told her it was. She then proceeded to tell me, tears welling in her eyes, that they just got here and are still waiting on the bone marrow biopsy for her 15 year old son. They had no idea what was wrong with him yet, but they were very scared. This woman was tiny, with big brown eyes that looked terrified. I wanted to wrap my arms around her and protect her from what she was facing, but I haven’t had any beers and if you know me, that’s the only thing that will give me the courage to hug a stranger.
I told her that she couldn’t be in a better place and that I would pray for her and that if she needed someone to talk to, which room I was in. I wanted to tell her it would be alright, but I knew that was a lie. There are no guarantees that we will walk out of this place with our children, that is the scariest and most helpless feeling a parent can face. So I offered the only thing I could, my friendship and my support.
I cried when I got back to our room, but once I was done feeling her pain and fear, it made me realize how far we’ve come. In two very long months, we’ve gone from those terrified parents to fairly strong ones. (We still have our moments) I know the biggest reason we are doing as well as we are is all the support we are getting from friends, family and even from strangers. Thank you all. We love you and this story will have a happy ending.
There hasn’t been a lot of posts lately, but a lot has been going on. Mom has moved back into the house, so the family is living together under one roof. Much easier on Devon, Mom & Dad.
Danielle is doing great, I’m still amazed every day how she finds stuff to do. Smiling and laughing is very common (or making odd noises). If it was me I think I would be very depressed, but she’s upbeat and very happy. Of course love food from home, Hospital food is starting to grow old.
Current Blood levels are as low as they can go: ANC=0, she’s had two platelet & red blood transions in the last week. Doctors say she is doing every thing right on target. She should start making her own blood again around the 6-20-15. So then we just have to get them up to a point that we can leave, so 4th is look good right now, but time will tell.
Thank-you for all the support, we really appricaite it.
Danielle is still going to school…even though she graduated. I’m so confused. Anyway for science today they made this nasty stuff called Gloop and it looks like intestines….icky poo
Danielle with her pet Gloop!
We have been sooo busy so haven’t been able to post for the past few days, but Danielle finished her second round of chemo. She is starting to feel better, sometimes her tummy hurts and she isn’t interested in food, but I got a very tragic phone call from dad tonight. Apparently they ran out of chocolate! I will run up there with a case of Kit Kat from Costco Stat! We want our girl to keep her calories up!! I don’t have any new photos, so i’m including ones from her most recent photos taken in December. Let’s keep praying and sending positive energy her way and get her back to her old self!!