Today I am letting my Mom write the blog because it's all about stuff I don't like to talk about. I want so save my energy for the fun stuff we're gonna get to do and I get tired. Thank you for reading this.
Love,
Bree
Note from Mom (Jennifer):
We decided to seek radiation therapy at Central DuPage Hospital in Winfield, IL. Brianna's home nurse and the doctor who we consulted with discussed Brianna's needs with DuPage Oncology Radiology and with Dr. Jason from Children's. They assured us that they would not recommend her receiving treatment there unless they were absolutely certain Brianna's needs would be met. Avoiding the M-F commute to Northwestern for 6 weeks is a priority as we would like to make the experience the best for Brianna by allowing her to maximize time at home with family and friends. She will go this Wednesday for the simulation where the radiologists will look at her scans and calculate the degrees of radiation, etc. Her first radiation treatment will begin next Monday. We are anxious to get the treatment started as she has been experiencing numbness in her feet, waist and tingling in her hands. She no longer complains of headaches and her back pain has become manageable with the increase in steroid medication. Brianna has adjusted to her regular morphine medication as she is not as drowsy as she was over a week ago.
Since Brianna's pain has become manageable and her energy has improved, she has been able to enjoy more activity. We have to keep a close eye on her to make sure she doesn't do too much, but she enjoys visits from friends and family and even ventures out for short periods of time. She enjoys going to an occassional lunch or shopping. This past weekend she was able to enjoy time with Aunt Jackie, Grandma & Grandpa Sharp, Aunt Julie, & Aunt Faith and Aunt Lisa. Aunt Jackie treated her to Pizza Fusion and frozen yogurt, Aunt Julie and Aunt Faith traveled from Kentucky and Champaign, IL to spend the afternoon with her (unfortunately we had an afternoon appointment, but they tagged along, happy to just have time with Brianna), and they met up with grandma and grandpa Friday evening. Brianna and Kaitlyn enjoyed a weekend with their dad and his extended family. The weather was beautiful over the weekend and Brianna was able to enjoy quality time with everyone.
Grandpa & Grandma Sharp presented Brianna and Kaitlyn with incredibly special gifts! They gave Brianna a rosary that was blessed at the Vatican by Pope John Paul, while Kaitlyn's rosary was blessed by a priest in Auschwitz, Poland! I am positive that Brianna will be carrying the rosary with her at all times...an unbelievable gift and we can not thank them enough! Grandma and grandpa were able to witness Brianna's faith because the Spinello family hosted a special mass at their home. Matt admitted feeling inspired by watching Brianna's attentiveness and sense of peace throughout the mass. We are grateful for the blessing and want to thank everyone who made it an extra special occassion.
Today, we will be visiting Children's Memorial for Brianna's appointment. She will begin the new chemo medication which will be in pill form so today is a routine exam, blood work, and vitals. Today is going to be AN EXTRA SPECIAL DAY because we will have the company of our very close friends. Brianna's BFF and her family are Cubs fans. We gave them an offer they couldn't refuse...free tickets to the Cubs game. If you are one of my fellow Sox fans (Siemann family, Sue & Phil, Katy Arme, etc.) please know that I am wearing black and plan on enjoying only food and sun!) We had to make last minute plans as Make A Wish called and offered us the tickets. I decided to call back after turning them down because I realized this would be a wonderful opportunity for Brianna and her friend to have a great time together...and it was important to me that I have someone who knows their way around the city!! Bob is traveling out of town and I tend to have trouble with the Garmin on occassion. I must apologize for "tricking" them into driving and I would like to thank them in advance for being our chauffeur. Thanks to our friend's offer to drive, Brianna and her BFF might be spared from hearing inappropriate language since it is a well-known fact that I can't stand traffic and "idiot drivers."
Please pray for a "good day" for Brianna so that she may thoroughly enjoy the occassion with her best friend. We hope her symptoms remain stable or improve and that her energy level allows her to participate in occassional activities/outings with friends and family.
We continue to keep all of our friends and families in our prayers. Max Lacewell, Kole Miller, Liam Reilly, Caleb Spady, Ravyn Finch and all the DIPG warriors!! Please pray for daily strength and courage for each of these children and their families. This is an incredibly difficult road and each of these children and their families allow us to be reminded of what's truly important and they inspire people every day!
God Bless!!
Jennifer and all of Brianna's Family
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