It is with very heavy hearts that we share some difficult news.
Amber is home with us, happy and comfortable. However, after a number of discussions with the doctors, we have come to accept that this disease is progressing extremely rapidly, and there is nothing more that can be done to stop it. She is home with us right now and that is where she will remain until Our Father in Heaven calls her to his home.
We wish we had good news to share, but it is not. In fact, writing this, I am deeply struggling because there are so many raw emotions and thoughts swirling through us — our heads, our hearts, and our bodies — it’s all-consuming of our beings, and of our souls. My being . . . and my soul, was put here on Earth because of my children. I am their mother; their provider, their nurturer, and their protector. And as her parents, this is something that, no matter how hard we tried, we could not protect our child from.
We met with Dr. Gillan and Dr. Martin yesterday (Monday) around 10:30 AM. They brought us into a conference room with a couple of other nurses and a child life specialist. Dr. Martin pulls up the MRI from April on the big screen, which was taken shortly after the first surgery where the original tumor was removed, and then he pulls up the MRI taken this weekend to show us the comparison. The recent MRI will forever be embedded in our minds. Essentially, the entire right side of her brain has been overcome by this disease, this tumor, and the tumor and swelling is now putting pressure on the left part of her brain, skewing and compressing the relatively straight gap that splits the two halves of the brain into a curved hairline. You cannot even see the brain stem or the ventricles, as they have been compressed so significantly. With something like this, an aggressive Grade 4 Glioblastoma, it is hard to say how long Amber has. Dr. Martin indicates most likely days to weeks, but not months.
We’ve had so many doctors over the past few days as well as the doctors at MSK give a surprised “Huh” once they meet Amber, having just reviewed the MRIs before walking in the room, and we now really understand why this is their first word. They all expected to see a little girl in severe pain, barely functioning, and instead find a little girl breathing, talking, smiling, walking, not in pain, and still giving her parents sass like any 7 year old… how is this even medically possible? How is it that she is even still functioning?
Dr Gillan, Dr Martin, and the others at CCMC have learned much about us over the past 265 days, and were prepared to discuss this with us in the way they knew we needed. They were very direct with us, and walked us through what could be considered as options, but explained the downsides of each as they would impact us. The images and records have been reviewed by many doctors at several institutions that we trust, and there is agreement on the options (or lack of) currently available. One option was surgery to remove half of her brain, which is very risky and very likely leaves Amber with a very low quality of life – and, doesn’t cure her of the cancer, just buys more time to find a cure. Another option was to take a chance on another clinical trial, knowing that the trial we did already try was the “most promising” and did not work, and that the only other potentially viable trials will require significant travel, meaning a very high likelihood of Amber leaving this world while she is in a foreign place, nowhere near the people she loves most.
Or, the option that we have chosen – to go home and have her with us, keeping her comfortable and happy, enjoying what time remains with the people who love her. We struggled greatly with this, so much more than I can express here, but have decided that this is the best and only option that makes sense — Home here with her family before going to our ultimate home in Heaven.
Amber is doing well right now. She is very tired, sometimes continues to complain of a mild headache over her right eyebrow that comes and goes, and her right pupil is still a bit larger than her left. The hospital sent us home with anti seizure medicine, steroids, and stomach medicine. Amber might be capable of going to school, but due to her increasing tiredness and not knowing when symptoms may strike, we just feel that it is best for us to be with her at all times. We will have Hospice at our side, and are being educated in pain management. We will make sure she remains happy and comfortable, to the end.
We selfishly want our baby girl to remain here with us on Earth. We know she could change this world for the better. Heaven knows we need that. At first we were mad that what we’ve been praying for didn’t come true; for Amber to be miraculously healed and cured of brain cancer. But perhaps, we actually did have a miracle. Perhaps Amber was supposed to leave us on March 22nd, 2018. But instead, was given an extra 9 months to be with us and to enjoy our time together. And for this time we’ve had, we are truly grateful to God.
Matt and I ask that you still pray for Amber. Pray for her to get through these next days to weeks with comfort and peace, and to embrace the new life that awaits ahead.