Today was a horrible day! I was trying really hard to be positive but it just wasn't working. We went to Brylee's radiation, which went great, then to clinic. I swear I had a million questions for her doctor. Each question she answered was negative. My worst fears were confirmed. Her tumor is called a DIPG tumor. The abbreviation is a diffuse intrinsic potine glioma. Basically, in english, a tumor in the pons, or middle of the brain at the top of the brain stem. This specific tumor is not just a ball it is intertwined into the tissue of the brain stem. Brylee also can not come off the steroids or her feeding tube. She can eat whatever she wants but we need the tube to administer her medications to her. I guess that part makes sense because she is literally getting around eight meds at one time and there is no way I would be happy taking them, let alone a two year old. Her steroids are not tapered off enough to just stop them cold turkey. So a little while long on them. She also has to start physical therapy tomorrow because she is not using her arms or legs. This is not because of the tumor. The day before we went in for her MRI and she was diagnosed she was running around like a crazy, wild child and talking up a storm. The minute they admitted us into the hospital all of that stopped. The doctor and I were talking and decided that it is most likely anxiety that is casing her to shut down and withdraw into herself. But now that she is feeling better and would maybe want to walk she literally can't now. She has gained so much weight because of the steroid and she hasn't been walking to keep up the muscle mass. So we're starting to learn how to walk again. We have no reasoning as to why she won't use her arms. But I guess the steroid takes away muscle mass as well. So she hasn't been walking in a month, steroid taking muscle mass, and gained a lot of weight. I can see why she is having issues. Her blood counts came back today and most of them are good. The only low number are her platelets. A normal person is between 100,000-150,000 and she came back at 71,000. The doctor said that they normally do a platelet infusion when they get to 35,000. Hopefully we never reach that point! Brylee also is starting to have some issues related to the radiation. She is getting sores in her nose, thus the nose bleeds for the past week or so, and sores behind her ears where her glasses sit. The doctor told us not to let her wear her glasses and we need to start putting hydrocortizone cream on her ears. On a hopefully happy note her doctor is going to look into that study at Johns Hopkins and Cornell for us. I hope that we are eligible for it. Her doctor seemed really excited about the idea behind the study which gives me warm fuzzies. Even if it can't save my little girl hopefully one day it will save someone else's.
We met with Make-A-Wish last night! We are all really excited for it. We asked them to send us to Disney World and Give Kids The World. I really hope it gets approved by her doctor. It will be our first family vacation and most likely our last.
While we were at the clinic with Brylee my mom called us in regards to our son Bryker. Bryker is four and was diagnosed with Type 1 Diabetes when he was 15 months old. I guess Bryker had been peeing a lot and throwing up at my friend's house. So my mom went and got him. Well his blood sugar was 497 and his blood ketones were 3.7!! He was totally fine at 8:30 AM and my mom picked him up at 11 AM! GEEZ! His insulin pump informed us that it had a delivery failure. So it was a frantic afternoon trying to get his numbers under control so we didn't have to make a trip to the ER.
With all that said this makes me truly frightened for our youngest daughter Byrklee. She is 15 months old this month and I'm scared she's going to end up with some incurable disease like her siblings! Our track record isn't the best. Cory and I had planned on having four kids and we were planning on trying for our last this summer. After Brylee got diagnosed Cory asked if I still wanted another one. I said no I can't handle another heart break! Obviously our gene pole isn't too grand and I'm not about ready to bring another innocent child into this world to just go through H E double hockey sticks!