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.
I've been trying to figure out how to put this in words for weeks. This is going to be pretty depressing.
How do you explain the fear of losing a child to someone who hasn't been through this? I would imagine it's similar to explaining colors to a person who's been blind since birth. No matter how descriptive, no matter how many words... it'll never quite encompass to full truth.
Since the news of Olivia's tumor having no blood flow, one of the most common things I've heard is "you must be so happy to be done" and "you must feel so much better." Which, yes, I do feel so much better, so much happier, more relaxed than ever.... but it's not done. It's not over. She'll always be a "cancer kid." And I'm still terrified.
I think I've actually cried more in the last few weeks than in months prior. I don't feel any different. Our good luck could change in an instant. I feel like I should be happier. I've heard "Oh it must be great that she's normal!" And I smile and nod... but she's not normal. And never will be. Of course I'm thrilled she is doing so well, as I know not everyone gets this chance. But it's still terrifying.
It was almost easier for me to deal with the stress and the fear while we were going through treatment. There was something to focus on. A beast to battle. Everything was one day at a time. The end of treatment gave you a bright spot to focus on while going through hell. And now, we're at the end of treatment and everything should be perfect. But everything has gotten much more blurry. There is no longer a task to tackle every second. We are now just expected to go back to normal, but we have no normal.
I'm also scared to death we'll become one of the families who has the unthinkable happen, and when you look at recent updates, you can see just how quickly things went south. I hate seeing families go from happy to devastated in a matter of weeks. I can sit and watch Olivia play and learn and be adorable and I will just break down into tears because I love her so incredibly much and can not imagine my life without her. And that fear, even in a miniscule form, permeates every moment of my life.
So yes. We are so overjoyed. So unbelievably grateful. And hearing "her tumor is dead" was truly the best phone call I've ever gotten. But we're not done. She's not cured. We're still a cancer family - and always will be. So I'm trying to adjust to this next phase. Because it's really new. And different. And scary.
Thank you for allowing me to vent about my fears. It makes it just a little bit better. And thank you for all the thoughts and love you've given to our sweet daughterthis past year...It does not go unnoticed.
Today is a new day.
We found out this morning that there is no blood flow to Olivia's tumor. Although that little 4mm bit is still in her brain, it's dead.
THE. CANCER. IS. DEAD.
We don't know if it's just dead tumor or if it's scar tissue but none of that matters, because there is no cancer living in her head. She's really done. In four months Olivia will have another routine followup scan, and until then - she is just a normal toddler. No chemo. No surgery. Nothing. Just done.
Excuse me while I continue to ugly-cry over the rollercoaster of this last year and the happiness I feel for my daughter's new chance at life.
With more love than you'll ever know,
Danielle and Ricky and SUPER Olivia
I've got so many ways to explain it - but I don't know if anyone would understand unless they're in my head. The best way I can think to explain it - Olivia, right now, is a real life Schrodingers Cat. Until we have her MRI - Olivia is both getting better and getting worse. She is both cured and terminal. She is both a normal kid and a cancer kid. Anything- good, bad, or otherwise- is possible.
My thoughts can flip back and forth in a millisecond. One moment I'm watching her play and learn and quick as a flash I'm crying my eyes out. She's both beautifully normal and extraordinarily different at the exact same time. Because of this, the scan-xiety sneaks up on me. Everything is fine and dandy and BAM... What if her cancer is progressing? What if she's sicker? What if she dies? And as terrible as those thoughts are, all of those are possibilities, just as likely as good news and tumor shrinkage.
Nevertheless, I'm sure my brain will become more and more consumed as we approach January 23rd. Please continue to keep Olivia and all of us in your thoughts.
Tomorrow our perfect little Peanut turns two.
Our crazy selfie-taking, squat-dancing, arm-swinging, smiley, laughing, incredible little girl is two years old tomorrow.
She is the strongest, happiest, most loving little person the world has ever known. And two years ago she made me the luckiest person that I get to be her mom
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.