Help Olivia Beat Brain Cancer
On Monday January 23rd, my 1 year old niece Olivia was admitted to the hospital for IV fluids after being sick and refusing to eat. While doing scans and tests to try and determine what was causing her fussiness and lack of appetite she was found to have a brain tumor, and was quickly moved to the ICU where she was sedated and had a breathing tube put in.
On that Wednesday, doctors at Arnold Palmer Hospital performed surgery to remove the large tumor from her brain stem. Olivia was kept sedated and intubated until February 1st to let her rest and heal. After the pathology report came back, Olivia was diagnosed with a Posterior Fossa Anaplastic Ependymoma, a type of brain cancer. She will soon begin chemotherapy, and will also need radiation.
Unfortunately, Olivia is still in the ICU, and will most likely be in the hospital for at least 6 weeks. After that time, she will need frequent hospital visits and hospital stays while getting further treatment. During this time, my sister Danielle and brother-in-law Ricky will not be working and will be using unpaid FMLA leave. As you can imagine this whole situation is very taxing emotionally, physically, and financially.
Danielle and Ricky are very independent people and hate asking for help, but over the next 6 - 12 months they will be needing lots of help. I ask for any donation you can give to help pay for medical and hospital expenses, as well as all the normal bills that will add up while they are not working. Any donation, or thoughts and prayers, will be greatly appreciated.
The days and nights leading up to a scan are some of the most stressful times for Ricky and I. Work suddenly seems harder, everyday tasks are more complicated, tensions wear thin. But we're trying our hardest to stay calm.
On a positive note, we (knock on wood) haven't seen anything else to indicate seizure activity since that one ER visit. So here's hoping.
Good, bad, or otherwise - we'll update you all about the scan tomorrow afternoon
Danielle and Ricky and Olivia
They did see some decreased activity in the cerebellum (area of the brain stem) which is to be expected from the location of her tumor. So we basically just have to watch her and go back to the ER and/or neurologist if it happens again. And we have a follow up in 6 weeks.
Of course I would have preferred a more definitive answer, but all in all, good news.
Thank you all for your thoughts,
Danielle and Ricky and Olivia
Ricky called the oncology clinic and they said we needed to go to the ER, as it may be that she's having seizures. (She'd done this a couple times while I was in New Orleans, to a lesser degree, and she's been crying in her sleep periodically) We went to Arnold Palmer and spent 8 hours in the ER, but luckily did not have to stay overnight.
Olivia had x-rays to confirm her shunt (system that drains fluid from her brain) was not broken. She also had an MRI to ensure there was no addition fluid building up that would cause seizures. Those tests both came back clear.
Originally, we were told Olivia would need an overnight EEG to look for seizure activity, but thankfully one of our oncologists saw her and said we could do an outpatient neurology appointment.
So we will be seeing a neurologist next weeks to discuss other tests, but we're hoping this is just behavioral (Olivia being a crazy "normal" toddler) and not anything worse
We will update as we hear more. For now, we're optimistic
Danielle and Ricky and Olivia
That being said, this page is cathartic for me. It allows me to express emotions I'm often too scared to talk about in real life. And this is one of those days.
I'm in New Orleans right now for work. I flew out here this morning and will fly home Wednesday evening. It's a brief stay that would typically be just a little rough on any parent (or anyone for that matter - as it's never easy to say "good bye" regardless how brief the time apart)
But I have been DREADING this trip. Obviously all the what ifs and what thens have been running through my head... what if she gets sick while I'm gone, I'm never away when it's time for bed, is she going to be sad, am I going to miss something important.... etc.
But I realized last night why I've been so scared about this trip.
If I miss Olivia this much when I'm only gone 4 days... what's going to happen if her cancer comes back and she dies?
And I know. I can't think like that. And it is/was just a brief thought that I can talk myself down from - because she IS getting better, healthier, stronger.
But this is the reality I live in (anyone who has been affected by cancer lives in)
There is no such thing as a simple work trip anymore. Everything has a deeper meaning now. And it's hard. But its life. And we're living it the best we know how.
I suppose the moral of the story (and advice I'm trying to give myself) is worry less and live more. And hug your babies tight.
We are so happy with the great news. Take care and love every minute with your precious little Olivia. Please send updates often as we want to know how she is doing and what new and wonderful things she is exploring and experiencing. We still want to be part of her journey. Love, Brooks & Barbara
What strong, amazing parents you are to sweet Olivia...God gave her to you for a reason. You are her strength and comfort and silliness all rolled into one! Prayers always to you, Olivia and her doctors for wisdom, compassion and healing.
Sending prayers and love for Sweet Olivia, Danielle and Ricky! I think of you three often and I am sending only positive thoughts! I know that you are surrounding Olivia with lots of love and care right now....Love is the best medicine!! XOXO
Thank you for the update. You all were on my mind this evening. Stay strong and positive. Continued prayers for Olivia!
Prayers for a clean MRI being sent for your beautiful sweetie!
God bless you all
She always has a beautiful smile on her face. Olivia remains in our prayers Barbara & Brooks
God bless her I am keeping her in my prays every day.
Olivia is so precious! I am a friend of Grandma Nancy and I know this little girl is surrounded by love. Ricky and Danielle, I know this is a tough journey but your love and determination is definitely a "plus" for your little girl, Olivia and your family are in my prayers.
What a beautiful face. Thinking of you every day and eager to hear the updates and excited to know that things are moving forward to being cancer free and healthy. Your family is in our prayers and I know that healing is just around the corner. Take Care Barbara and Brooks
Dear Danielle and Ricky, Our hearts are with you at this difficult time. She is a trooper and a very cute peanut!! With Love, Barbara & Brooks
Hey guys, thank you so much to everyone so far. As of right now Olivia is in surgery to have her port and permanent feeding tube and the lumbar puncture done. We're thinking she will start chemo next week, but as we're learning - everything can/will change. After 2 rounds of chemo she'll most likely start radiation which is Monday through Friday energy day for six weeks... but again, she may need another surgery, or God knows what else. Again, I thank you in advance for the thoughts and prayers. Our little peanut is a FIGHTER but she's got a loooong road ahead.