Bella Update: Friday, September 23, 2011 – Detail Version:
Foremost, thank you all so very much for so many things: prayers, happy thoughts, meals, entertaining the kids, helping get info out to others and showering our little Bella with so much love! I can’t imagine how we would have coped without such prayer, love and support! We’ll never be able to fully or adequately express our gratitude – but we will try to do so!
Background:
Sept. 6-10, 2011 – After taking into account numerous symptoms from throughout the summer with the addition that night of dilated eyes that didn’t respond to light and Bella complaining of a headache took us to Hoag Irvine Emergency Room.
Bella was seen very promptly and examined with a CAT Scan within half an hour! The doctor’s bedside exam of Bella threw me into the surreal feeling of being a character in Grey’s Anatomy recognizing what all his sensory tests were leading to. The CT scan revealed what they called a mass around the pineal gland in the brain that was about the size of a baseball. Since Hoag doesn’t have a pediatric intensive care unit, Bella was transferred within an hour via ambulance to Children’s Hospital of Orange County. The rest of that evening is a blur.
Bella was admitted to CHOC and held for observation. Early in the morning CHOC’s pediatric ICU & neurology team continued their evaluations and we went for an MRI. They sedated Bella with Ativan for the MRI which had the opposite effect. She became hysterical and began to hallucinate. That was the first of the longest hours I have ever experienced, watching little Bella go through so much pain and fear. They decided to put Bella under full anesthesia for the MRI which sent us to the waiting area.
It was then, about 11:00 am Sept. 7, our dear friend Julie Diaz and Frank Morse, one of the pastors from Bella’s school, Calvary Santa Ana, came to pray with us and help us cope with this nightmare. We’ll never forget these two angels who just showed up and helped us survive that awful day! Thank you so much!
The MRI gave Bella’s neurosurgical team a plan to endoscopically insert a VP shunt, perform a third ventriculostomy and extract a portion of the tumor for biopsy. Ninety minutes felt like an eternity – it was brain surgery but it just didn’t really register consciously for us.
Days and nights wore on. Thank God for grandparents and friends – on the Wednesday, Val’s parents drove literally non-stop (except for refueling) from the Utah/Colorado border to come help; my parents and Val’s parents and friends from Calvary helped with pick-up/drop-off and entertainment for Liam. The “Bella Fan Club” showered Bella with prayer, love and pampered her with gifts in addition to making sure that Val & I were keeping our strength by feeding us, talking with us, helping communicate updates and the power of prayer and love.
The VP shunt worked as did the ventriculostomy and they released Bella to come home late Saturday afternoon September 10th. Follow up appointments with our pediatrician and the neuro team lead to a long, excruciating wait for biopsy pathology and a referral to an ophthalmologist.
Update:
Wednesday, September 21 – The second daily call to the neurologist brought Dr. Loudon on the phone with pathology results with the “ink still wet.” I immediately thought, “Must be good news…what kind of doctor tells bad news over the phone!” Well, serves me right to assume - the diagnosis revealed Bella with a pineoblastoma, a malignant cancerous mass on and around her pineal gland. Dr. Loudon informed us that he would present Bella’s case to the “Tumor Board,” a community of doctors that pool their resources to discuss and discover. After that meeting, we would hear from the CHOC oncology team which will explain to us what the next step would be.
The day also resulted in getting squeezed into an appointment with an ophthalmologist…finally, after several hours over the course of days calling doctor offices, insurance and our medical group.
September 22 – No news from anyone except for resolution on some insurance questions. Three cheers for Concordia Plan Services and Mrs. Lee – she has been a wonderful advocate for us with both our insurance and medical group!
September 23 – After days of researching Bella’s cancer type, treatments and how to tell your kid they have cancer (and how to tell their sibling), I had an informative and comforting conversation with CHOC’s oncology psychiatrist who helped me firm up how we were going to tell Bella that she has cancer and will have extended stays in CHOC. She is a beacon of light and faith! Bella took the information really well and relished in how much we were telling her that we love her and giving big hugs and kisses. We decided it was time to tell her as we anticipated the “C” word would come up in here ophthalmology appointment.
A scary but wonderful exam with Bella’s ophthalmologist. Dr. Sami is wonderful with kids and parents alike. I think he sensed our frustrations with waiting and really not having much information from neuro or oncology. He hopped on that phone and garnered amazing results for us with both! More in a moment.
In addition to a mild astigmatism completely unrelated to the tumor, Bella has bilateral optic atrophy and bilateral disk edema. In other words, the tumor has caused swelling of the optic nerve and loss of some function, particularly in the right eye in which she can only see hand motion and 20/80. From examining her optic nerves, Dr. Sami believes that this condition has existed for at least six months, likely more. It was this combined with how Val and I looked why I think he jumped on the phone so quickly.
Dr. Sami connected us with the head of CHOC’s oncology team, Dr. Violet Shen, a delightful lady to speak to on the phone who informed us that she had been studying Bella’s case and wanted to get her in first thing Monday morning. Dr. Shen told us about how aggressive Dr. Loudon can be with wishing to remove tumors surgically, however, in Bella’s case, he said it’s too dangerous given the location of the tumor. Dr. Shen concurs and will be conducting radiation and chemotherapy on the blastoma. Specific type of treatments will be revealed to us at our orientation Monday after more scans are performed.
Dr. Shen shared with us that this particular type of cancer is more rare than others and can also be quite aggressive, spreading easily to other parts of the brain and spinal chord. The good news is that’s where it stops – it does not spread to other tissue such as other organs, bones, bone marrow, etc. Also, despite its aggressive nature, it is sensitive to radiation and medicine treatment, as such, Dr. Shen has seen more successes than failures in other pineoblastoma treatments. Thankfully, this all correlates with much of what I have read and researched so I’m feeling more confident (still scared out of my wits though) that Bella will outlive Val and me!
So, come 8:00 am Monday morning, we return to CHOC for at least a two-night stay, possibly longer – we don’t know yet. We know that many will want to come visit Bella. We love and thank you so much for sharing your love and prayers with Bella…seeing her smile and hearing her giggle is the best bottle of hope and joy that we could ever desire.
I anticipate that Monday and Tuesday will be a whirlwind and not entirely sure what to expect. I doubt we’ll be able to accept visitors at this point. We will continue to post updates on our Facebook sites and will let y’all know when visitors will be welcomed. We’re also considering starting a Care Page as we’re receiving several requests for a way to circumvent digging through the new Facebook layout.
Bottom line: while the pathology was certainly not great news, there is much hope for recovery. This will be scary for all of us and, as we’re told, a long, trench warfare-like road so we ask that you keep all of us in your prayers, especially our baby Bella, and that the treatment proves successful and causes as little trauma to Bella as possible.
Again, we can’t thank everyone enough…we are so humbled and so grateful for all of you and the blessings that you have showered on Bella, Liam, Val and myself, even if it is just a hearty “Good morning – we’re praying for you guys.” Thank you, thank you, thank you!
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