One year ago today I rushed Brianna to Edward Hospital (September 28th, 2008) as she was crying and screaming from a headache, a headache that became increasingly severe over the past few weeks and left her with little to no relief. On Sunday evening last year we finally decided this is not a normal headache. Brianna underwent a CT scan and the end result was good news, “looks good.” The diagnosis was severe migraines (family history) likely brought on by certain triggers so we would have to keep a diary to figure out what sets off her headaches. Brianna could find no relief from any remedy and was now waking up in the middle of the night screaming and now vomiting. Brianna said to me, “Why can’t they figure out what’s wrong with me? Something’s wrong, this pain is so bad I can’t take it anymore!”
The only symptom Brianna experienced was very severe headaches. Looking back, I also remember her snapping at me with a look of anger. This was NOT Brianna speaking, it was not in her nature and she frightened me with this change in behavior/attitude. The morning of Saturday, October 4th, 2008, Brianna was diagnosed with DIPG after Central DuPage Hospital did an MRI. Her tumor was much larger than others with this type of tumor. Her tumor was also pressing on the Medulla Oblongata, which explains the anger and aggressiveness we witnessed over the past couple of weeks. My advice to parents is to always go with your gut, listen to your kids, and push doctors for more tests and answers if something doesn’t seem right. Central DuPage was going to send us home Friday night confirming Edward’s diagnosis, but I asked what else they could do, are there any other tests? I think they only admitted us because it was approaching midnight…I can’t imagine what we would have done if we were sent home. Now, with the anniversary of the diagnosis approaching, we still find ourselves living in a surreal world and wonder, “Where did the past year go?”
Last August (2008), Bob and I had a discussion wondering how to break the news to our kids… great-grandma had lung cancer. The doctors would do radiation therapy, but decided she would not be able to tolerate chemotherapy. Given grandma’s age and health the news was not a surprise, but cancer was not something our family had experienced. We didn’t even know if we should use the “C” word because we did not want the children to be afraid. We explained that many years ago cancer was a scary word and left little hope for individuals and families, but now people are winning their cancer battles every day. We told the kids they could pray for great-grandma while she goes through treatment, but also talked about how blessed great-grandma was to be married for 67 years, have three children, six grandchildren, and ten great-grandchildren. We told the kids that even if great-grandma got really sick, it’s comforting to know she would have lived a very long, blessed life.
Who would have believed that less than two months later we would have to find a way to tell our 12 year old daughter that she herself, had cancer. This was an altogether different story. Brianna’s type of cancer had a very grim prognosis and left us in disbelief. A surreal experience which leaves parents lost in an inescapable nightmare for an indefinite period of time. The doctor told us there’s no effective treatment and our only option would be six weeks of radiation therapy to shrink the tumor, and it would only be a matter of time before it would come back with a vengeance. The doctor left us feeling helpless. The doctors words (“There’s no effective treatment,” “It’s only a matter of time,” etc.) was impossible to absorb, much less accept when they are talking about your child! He may have left us feeling helpless, but it was up to us to look deep within and find the strength and courage to fight not only a physical battle, but also an emotional and spiritual battle as well.
I will never forget the discussion with Bob, Matt, and Maria about how to tell Brianna. “Should we use the “C” word?” “Don’t say anything about the statistics!” “Tell her we will be seeing a lot of doctors…” “Let her know she is getting medicine to help her headaches feel better, but she might feel a little worse before she feels better.” We were all shocked, then relieved that she took the news better than expected. Eighteen months, maybe two years, “That’s long enough for a miracle!” we told ourselves. As we began making our calls to break the news, all we asked was for people to pray for a miracle healing, and in the meantime we are going to do whatever we can to fight this battle. Matt and I, along with numerous family and friends, began immediate research deciding that we were NOT going to be told there is no hope, BUT…how do you find hope when you are feeling hopeless?My faith has been tested many times, but losing a young child is a test no one should ever have to be put through. I lost my dad when he passed unexpectedly (I was 13) and faced a serious illness (staph infection) where I could have lost my life. My right leg was paralyzed and I experienced excruciating pain, though after Brianna’s experience I have a new scale for measuring pain. I’m a total wimp compared to Brianna!! I remember how Bob, Brianna, Kaitlyn, and many other family members helped me through pain I never thought was possible. I fought a 3-4 month battle, but completely recovered and gained a new perspective on life. It was a huge sigh of relief to know I would be around for my kids as my biggest fear was leaving them too soon. I dreamed of a life like my grandparents and looked to them as a model, praying that I could have been just as blessed in my life.
What a remarkable life to be able to celebrate a 68th wedding anniversary! It’s truly a blessed life when you live to see all of your children raise their families, BUT to be blessed to witness your grandchildren raise their families, “What a wonderful life!” Leaving three generations with many years of fond memories is remarkable. Great-grandma’s house was almost a daily event in the summers. Swimming, baking, shopping, walking to parks…ranging from age 22 down to 7 years old, she experienced so many joyous celebrations.
One evening this past spring, Brianna told me she had, “a face to face conversation with God.” She said, “God told me to be close to great-grandma and great-grandpa.” She was often more concerned about great-grandma than herself. She always focused on how others felt and often apologized to us for having to watch her battle cancer. I believe Brianna, who was once the biggest drama queen, built an unbelievable tolerance for pain knowing that when she suffered we suffered. Brianna would apologize to us for having to watch her suffer in pain and we could do nothing to take it away! As Brianna battled cancer along with her great-grandma, and as hard as it was to watch my grandparents kiss my daughter good-bye, I try to remind myself that it must all be part of God’s plan.
Brianna passed on July 25th, 2009 and was reunited with her great-grandma on September 14th, 2009. Great -grandma lost her battle to lung cancer late that afternoon. It is difficult to endure the loss of two people you love and care for so deeply, but we find comfort knowing they are together watching over us, no longer in pain, and finally at peace.Both Brianna and Grandma declined rapidly. After Brianna died, grandma would kiss Brianna’s picture every night before bed. She told us how Brianna was visiting her and even touched her arm one night. When grandma passed away I felt an overwhelming sense of peace because I knew Brianna was there to greet her and they were both over their pain and suffering. My grandmother loved all of her children, grand-children and great-grandchildren so much, that God made sure she had one of each to greet her in Heaven! My dad was considered a son and surely he greeted her with his typical line, “So where did you leave your broom?” My cousin Scott and Brianna must have greeted her with their big hugs and beautiful smiles.
Again, I did not want to relive the memeories of last year's diagnosis, but hopefully share another part of Brianna’s journey and let everyone know how we are doing 2 months after Brianna's passing. I know a lot of people were not part of our journey from beginning to end, so as we approach the one year anniversary of Brianna’s diagnosis (shockingly surreal that Brianna is no longer with us), we wonder how we ever found hope when feeling hopeless. People continue to tell us how our journey has changed their lives. Some say they have no idea how they would handle a similar situation and are amazed/inspired by our strength and courage (Which came from all of your encouragement and continued support). However, when you are put in a situation where your child’s life is on the line and doctors are leaving you feeling hopeless, remind yourself to have faith in God’s ability to heal and know His plan is perfect …our faith allowed us to find hope when we felt hopeless. We now find hope and peace in the knowledge that by sharing our story Brianna inspired people to fight pediatric cancer, deepen their faith, and count their blessings more than ever!!
God Bless You All!
Jennifer (Angel Brianna's Mom)
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