Update

We've been home since Monday and its been wonderful. 2 weeks in the hospital can really drain you! I'm definitely feeling drained lately. We've been sleeping much better but I still don't feel caught up. There is just too much going on! Today we got the "results" of her latest MRI. I say it like that because yesterday we got "results" that showed some changes but they didn't know what it was because they were just basing it off the radiologist's report. We were told it hadn't changed "that" much and Dr. Murali would look at the slides and get back to us. Isn't that nice? Yea there might be some growth or something changing but we'll just get back to you, no biggie. This is kinda what happened last MRI, except last time a Dr told me there was definitely something growing there and had me freaking out for days. If you don't remember from last time that "growth" turned out to be most likely scar tissue (most likely.. not to sound negative but they cant know for sure and that fact always makes me crazy.) Anyways, I tried not to be crazy this time and just stay positive. I'm trying so hard to have faith and not let anything get to me. If I know there is nothing there then I shouldn't be worried to death about the MRI's. ANYWAYS,  today the neuro-oncology team looked over the slides and said they didn't see anything to be concerned with. Dr.Murali is out of the office but he will look at them when he gets back for the final say. Dr. Murali is her oncologist~who specializes in brain tumors and has worked at TCH for 20 years and actually took part in a AT/RT study at TCH. But it looks pretty good, I'm thinking if there was something suspect the neuro-onc team would just wait for him to look at them before they said anything. Although this is good news we did receive a bit of bad news today...
It looks like there has been some pretty significant damage to her hearing. :( They monitor it very closely because this is common with the cisplatin. Right now its only in the high pitch range which you don't actually use for normal hearing and speech. That is really great news! But its very close to the normal range. I'm so scared that there will more damage to it and it will affect her normal range hearing. She still has 2 rounds to go and apparently the chemo lingers in your ears and cause damage for up to 6 months after treatment is completed. :/ Like I said earlier this is common and they can adjust the doses of chemo if gets really bad. Its not something they like to do but they can. Suzette said that right now they won't change anything, we have to weigh our pros and cons... hearing aids vs regrowth. Its a no brainer but doesn't make it any easier. Also trying to stay positive with this, Suzette says that a lot of times the kids hearing takes a huge hit then its not effected anymore with  remaining treatments. We can only pray. The unknown is so hard.
Ugh, its so hard to stay positive all the time. I think I'm going to take a solo trip to Austin this weekend to get away for a bit. Just the 2 weeks in the hospital was enough to make me crazy but I'm just tired of seeing the same walls everyday. All day everyday at the hospital, all night every night at home. I don't want to feel like this, I know this is all to make her better and it will be over soon. Its just very hard being trapped. We can't be in public at all, no restaurants, grocery shopping, trips to target, or anything. The only place we go to is a hospital surrounded by sick children all day, awaiting this weeks results... Hours waiting for labs to find out if her white blood cells are recovering or if she'll need a transfusion today. Waiting in fear for results of MRI's or Lumbar punctures, vision and hearing tests. Pleading with her to sit still and calm down for echos and ekgs, blood pressures and temperatures. Begging her to just take her medicine and not throw it back up, or actually eat something, anything. Listening to her scream bloody murder for dressing changes or baths, or anything she doesn't want to do these days. She has gotten into the habit of just screaming when she doesn't want to do something, like change her clothes, take a bite of something, walk. 36 lb. gets heavy after awhile. I'm whining. I know. I'm just tired. Three more months and this will be behind us. She will be all healed and the only thing I'll be going to hospital for will be the occasional MRI that will report nothing but good news for the rest of eternity.
Please pray that her hearing isn't affected anymore. That her body is protected from all the harmful side effects of these treatments, but that they do their job! That we can stand up and say we beat this monster! That her body recovers quickly from this round and stays strong for the next two. That she doesn't get another infection or fever and stays as healthy as one can possibly be during all this. Pray for strength, for Hayden and me, so we can continue this fight until we win this damn war. I hate cancer. I hate everything my baby has had to go through already and all the challenges and obstacles she will have to face in the future because of it. I hate all the pain and suffering its caused us and the fear, anxiety and uncertainty of the future that its brought for our family. Life isn't supposed to be this way. I know we have to continue to stay strong and have faith. I am and do. It's just time for a breather.