This post is #161 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.
January 15, 2009
Do you remember playing the Telephone Game when you were a kid? It was best played with a large group of kids sitting in a circle. The first kid would think of a sentence (the longer the better) and whisper it into the ear of the kid sitting next to him. Then that kid would whisper it to the next one, and so on around the circle. The last kid would then say out loud the sentence that was whispered into his or her ear. It was inevitably quite different than the original sentence which started the game.
That's what started to happen in our community and the communities surrounding it as Hannah's illness progressed. We began to hear rumors that the word on the streets was that Hannah's death was "imminent" or that the doctors had given her "two weeks to live." Neither of these things were true, at least as far as we knew, and we felt we needed to address these rumors before they went any further.
By this time, my emails were going out to hundreds of people directly. I was sending to so many people, I had to send my emails in three separate batches. A large number of the people who received them directly forwarded them to others ... so thousands of people were receiving our updates on Hannah. What a blessing it was to know that so many people were loving and praying for our family! We received countless emails in reply, and I still have all of those emails printed out and in binders.
My email from ten years ago today was our attempt to catch everyone up on our story and dispel the rumors going around while acknowledging that Hannah could be nearing the end of her earthly life ...
This really isn't going to be a "Hannah Sullivan update" as much as it's going to be "Hannah Sullivan summary". We've had some things on our hearts that we really wanted to take some time to share with you...
Many of you who receive these email updates joined our journey in the middle, and some of you only very recently, so we wanted to take a little time to review the events of the last eleven months. In February of 2008, Hannah began having some very unusual symptoms, including severe headaches and nausea in the mornings, double vision, and dilated pupils. We took her to our regular doctor, who referred us to an ophthalmologist, who referred us to a local hospital for an MRI. The MRI was done on February 20th, and indicated the presence of a tumor in the pineal region of Hannah's brain. We entered Arkansas Children's Hospital the next day, and on February 25th, surgery was done, the tumor was successfully removed, and sent off for a biopsy. She remained in the hospital for about six days following the surgery. When we returned about a week later for suture removal and to find out the results of the biopsy, we were told that the tumor was a Grade IV glioblastoma multiforme, a particularly aggressive type of cancer. We met with our oncologist that day, and he told us that this type of tumor was extremely rare in a girl Hannah's age (she was 16 at the time), but because she was so young and healthy, he felt that she had a 60-80% possibility of a cure. Hannah began a 6-week series of radiation treatments to her brain and an oral chemotherapy regimen. For several months, all went well...she completed her sophomore year with honors, enjoyed a fun summer, and began her junior year in the fall. MRIs were done every two months, with an "all clear" each time.
In September, she began having symptoms which were eerily similar to what she had experienced in February. An MRI was done, about a week earlier than was scheduled, and the results were not good. On September 25th, all four of us went to meet with Hannah’s oncologist, and he explained to us that her cancer had returned, in the form of multiple tumors in her brain and spine. He outlined a new treatment regimen which we were to begin immediately, but told us with tears in his eyes that even with treatment, her chance of cure was less than 5%. On the way home, we decided as a family that we would only share that 5% number with immediate family and a few very close friends and then disregard it, because we don't believe that our God is a God of percentages. Hannah began a series of 20 radiation treatments to her brain and spinal cord, and was to begin a new IV chemotherapy regimen within a month after completing radiation. The radiation was quite effective in shrinking the tumors; however, it took such a toll on her body that we were unable to begin the chemotherapy as scheduled due to extremely low blood counts. She was finally able to start the chemotherapy treatments the week before Christmas, and she is scheduled to receive a total of four (one every two weeks) to be completed on February 2nd. At that time, a scan will be done to determine the effectiveness of the chemotherapy and to help determine what her treatment plan will be from that point. We feel that she is in very good medical hands at Children's Hospital, as this is the same chemotherapy protocol that she would be receiving if we were at St. Jude's or Duke.
We've had a bit of a setback just over the last couple of weeks, in the form of worsened double vision (she's had some double vision ever since the surgery) and a greater feeling of being off balance, which has made reading impossible and walking somewhat difficult. An MRI done on January 4th showed a return of cancer cells in the area of the original tumor. This area cannot be re-radiated, and another surgery is not possible. We are proceeding with the chemotherapy treatment plan, which our oncologist acknowledges will need intervention from God to be effective. Hannah's mind is as clear as ever, her wit is sharp, and her faith is strong. She continually tells us not to worry about her...that she is going to be "just fine."
We share all of this with you now for a couple of reasons...one is that we have heard through various sources that some misinformation has arisen in our local community and some of the surrounding communities. It has been said that Hannah's death is "imminent" or that she's been given only "two weeks to live". We certainly understand how this type of misunderstanding can occur...we've all played the "Telephone" game and know how a story can easily and innocently become confused. Please know that we are not angry or upset by this...we just want to make sure the information is corrected. Our doctor has never given us the impression that death is imminent; nor has he given us any kind of time frame such as this. If that type of news is ever given to us, we will pass it along as we feel is appropriate.
The second, and far more important reason we share all of this (including the 5% number) with you right now, is to let you know that we are continuing to pray boldly for Hannah's complete healing, as we know so many of you are. The more bleak Hannah's medical situation appears to be, the more glory God can receive by providing a miraculous healing. He is an amazing God, and we know, without a doubt, that He is able to heal her, no matter what the medical doctors may say. At the same time, we do understand that in His sovereignty, He may choose to heal her by taking her to heaven. And when viewed from an eternal perspective, we know that her future is secure. Our job, as those who love her, is to boldly pray for her healing, and to be ready to accept her Father's will for her life. How great our rejoicing will be if He chooses for her to remain on this earth for many more years...and what an amazing testimony she will have! Far more difficult will be the "sacrifice of praise" we will give if He takes her home sooner than we would choose (I think I finally truly understand that phrase). In the meantime, we will live one day at a time, enjoying every moment we have with our family, and remembering that God is good, all the time.
Jill & Brad
"But now, Lord, what do I look for? My hope is in You." Psalm 39:7
"Through Jesus, therefore, let us continually offer to God a sacrifice of praise – the fruit of lips that confess His name." Hebrews 13:15