Yesterday was supposed to be an easy day. Brianna had radiation to the spine at 7:00 AM and an MRI of the brain at 8:30 AM, then home to enjoy a relaxing day. The day was off to a great start as we made it to Winfield and back to Naperville just in time for MRI registration at Edward Hospital. I was able to stay with Brianna until she was sedated and Matt waited for her to finish. In the end, everything was o.k. but it definitely had me frightened as I waited by myself and worried about Brianna’s MRI. Soon, Brianna was back in the room and was feeling good. Matt informed me, however, that her platelets dropped back down to 24 and they were going to keep her for another transfusion. Her white blood cell count also dropped and we will have a visit from the home nurse tomorrow morning so we can learn how to administer a medication through her port that will help bring up the white count. Ugh…nothing is ever easy!!!
Something that prompted the MRI and that has become more troublesome is the loss of short term memory. Brianna is becoming increasingly frustrated about her memory loss as she can’t remember anything she has done throughout the day. It’s very difficult to hear her ask the same questions over and over and for me to try and answer without showing frustration. She continually asks what day it is, what we are doing, where we are going, etc. and she will ask the questions continuously throughout the day, sometimes repeating herself within minutes. She doesn’t remember that Eric and Haley are in Florida with their mom and she continually asks where they are or when they are coming over. Today she asked this question at least 5 times on our way to radiation and she was asking again when we returned home as she wondered where they were. Hopefully, the MRI answers our questions about what could be causing the short term memory loss, and more importantly, tells us what course of action we must take next!
Brianna finishes radiation in 1 week (5 more treatments) and it can’t come soon enough. Though there is a possibility that she could face more radiation to the brain if the cancer has metastasized to parts beyond the brain stem; we will cross that bridge when we get to it. The cancer is in the driver seat forcing us to respond whenever symptoms occur. We had to interrupt the medication (Avastin and CPT-11) in order to focus on the cancer in the spine, beginning radiation immediately. The focus shifted from the head to the spine and now we are forced to look at the head again as she is experiencing a slight increase in headaches and problems with memory. We will review the MRI result with Dr. Jason at our Tuesday appointment.
There are no easy answers and nothing to guide us in this journey except looking at Brianna and how she is doing, listening to doctors’ advice, praying, and making a decision taking all things into consideration. Even if we get back into the driver’s seat, the cancer will hold us hostage and tell us where to go and what to do.Thank you for your continued support and unending prayers. We want to hold up our special friends in prayer. Please pray for “Little Dude,” Max Lacewell and his family as they struggle with another leg in the journey. Also, please pray for Liam Reilly and his family as they are experiencing a very difficult time and are in great need of peace and comfort. All of our DIPG warriors are extraordinary children and their families’ exhibit unbelievable strength and courage. We pray for all who have traveled this path, are currently traveling it, or might face it in the future. God Bless!!
Love,Brianna, Jennifer (mom), Matt (dad) and family
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