We seem to have a new medication schedule for Brianna that is helping with the headaches, nausea, and sleeplessness. Last night she slept from 10-6, took some medication and ate a small snack, then slept again until 8:30!! Woo-hoo!! We were able to get a handful of hours in one shot! Tonight we begin a schedule with a nurse who will be here Monday-Friday, 11PM-7AM…. So maybe Bob and I can get out of our zombie-like state!!Last night we had ALL of Brianna’s cousins over for a sleepover/lateover. So you can imagine, I will list names and ages...just to give you an idea of the craziness! (Bridget 21, Bernadette 21, Amanda 19, Lauren 19, Christopher 16, J.J. 15, Kayla 9, Brendan 7, Colleen 4...and that does not include our four kids (Brianna 13, Kaitlyn 11, Eric 14, & Haley 12)!! I could only imagine how insane it would be to add the cousins on her dad's side of the family!
By the time everyone arrived she was tired and didn’t feel like participating in the games, but she did enjoy having everyone together. It was tough on several of the cousins to see Brianna’s current state and several witnessed her fall twice this morning. Once Bob and I helped her back up and gave her the walker, she was apologizing to everyone while she walked to the kitchen. Typical Brianna, worried about everyone else and their feelings. We were finally able to get all of the cousins together at one time and this is nearly impossible with ages ranging from 21-4, jobs, college, sports, family commitments, etc. Brianna’s 13th birthday was close but Amanda was at Notre Dame, last night we were able to finally make it happen as the youngest was able to arrive before Brianna passed out for the night. We will be posting pictures soon since it has been a long time!
Brianna has had some increased headaches and nausea but it seems to have gotten under control with the new medication schedule. When she does have a few severe episodes she is still able to control herself a lot better than I would be able to. For example, in the Dells she was complaining of the worst headache and nausea EVER!!! She said, “I have a lot of words to describe how I feel right now, but God would not be happy with me!” Hell, oops, I mean heck…I would just let it out with my Irish temper and likely include colorful language (which is now used very rarely…24/7 with Brianna for 8 weeks cured me) I highly doubt I would have the restraint and disciplne to be in so much pain without using a single bad word! No matter what, she does not want to offend God.
Finally, she did view the video from WCIU and I wondered how she would react. Though she was a little drowsy she did watch the entire video. I was prepared for all sorts of questions and rehearsed what I would say or how I would explain things to her if she picked up on the statistics. She asked me to rewind a part where it showed the scan of her head. She asked, “Is that my head?” I told her yes. She then went on to say, “MAN, I have a BIG head!” Whew…that was all she had to say! She enjoyed the video even though she was almost impossible to deal with during taping because she is very camera shy!!
Thank you to Aunt Jackie and Uncle Dave for hosting the Poker Night Fundraiser!! We really appreciate all of your help around the house,helping with the kids, and efforts in fundraising!!
I want to ask for more prayers from everyone as we learned that the mother (Kim) of another DIPG child (Caleb Spady) was just diagnosed with colon cancer. Doctors are hopeful that surgery will resolve the issue, but please send some extra prayers. She is a mother of 4 boys, had breast cancer, is dealing with colon cancer, and is also going through the same battle we are…I can not even imagine what the family is feeling and experiencing right now. You can visit their site on carepages if you are interested in sending a well wish. Just type “KeepingUpWithCaleb” in the box under the “Visit” icon. Also, please keep the Reilly family in your prayers as they adjust to the loss of sweet Liam. Keep in your thoughts and prayers all the children and families battling progression and also pray for those who are stable, that they may continue to be blessed with good news!
Thank you and love to you all!
Brianna Sharp & Family: Jen & Bob Siemann (Eric, Brianna, Haley, & Kaitlyn), Matt & Maria Sharp (Zachary, Madison, & Gianna)
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