It's not nothing.
Two months ago, Scarlett's routine MRI showed a mystery spot. There was some hope it was a blood vessel. Turns out it isn't.
Today we met with her neuro-oncologist. The new MRI shows that the mystery spot has grown. It is about the size of - which food is good for this?? - pumpkin seed, maybe? A few grains of rice in September, a few more grains of rice now. It is only visible on 2 of the many slices of MRI images. In essence, tiny, growing slowly, but definitely growing.
There is some bad, some good, and a lot unknown.
The bad is that after over 18 months of being tumor free, Scarlett once again has an active brain tumor. It is crushing to write this, devastating to hear, and horrifying to think about. It feels like everything we did - 12 months of chemo, losing her feeding skills, tubes, shots, extra surgeries - was a waste. It may be what has staved this off so long, but it still feels like we tortured her, and left life-long deficits, for something that didn't work. As far as I know, Scarlett is the only one of the kids with this same brain tumor in our little group (about 7 of us) that has had a recurrence. Recurrent brain tumors are typically more challenging to treat because the first round of treatment obviously did not work; we have to attack it in a different way. However, every case is different, especially when the tumor is as rare as this, so we proceed with only Scarlett in mind.
As difficult as this may seem, there is some good. We are currently at the "best case scenario" stage: the growth (whatever it is - more on that below) is so small, it may not even be able to removed yet. It is small enough to be treated as is by CyberKnife radiation, which would have few, if any, side effects, and is likely to stop the growth in that area. We are still learning about the different types of radiation, but her doctor feels like the CyberKnife option is the least invasive, most effective and easiest on a toddler (she thinks it would be just one session on one day.)
The composition of this mystery spot is unknown. It is at the base of the old tumor - the part that was most vascular, the hardest to remove, and where the tumor likely originated when she was developing in utero. It is growing very slowly, which hints at it being something other than glioblastoma multiforme, which is a severely aggressive tumor that almost never grows slowly. It's possible it is a later maturation of the same tumor - some new iteration of the few cells that may have been left behind in the first surgeries, that has survived all the chemo, and that has developed a mind - and growth pattern - of its own. We won't know the exact make up until (or unless) it is surgically removed and biopsied, which may be a while, since it is so small.
Tomorrow, we take a disc of the MRI images to her neurosurgeon in Oakland. He will decide what he thinks can/should happen from a surgical point of view, and then discuss with neuro-oncology in Palo Alto. On Monday, the hospital holds their weekly Tumor Board, where the team of doctors and specialists confer about all the active cases and decide a plan of action. We should hear their plan Monday afternoon. The plan may be to wait for it to grow a bit more - not my favorite option.
Until then, we just forge ahead. We are still keeping our holiday travel plans, still working full time, and still planning to keep her on her schedule of school and therapy as much as we can. I am surprisingly composed. I guess I am not really surprised - it just seemed time for some kind of interruption in our life. I have been out of my mind the last few days, distracted and easily upset. We have been short with each other, and just felt the cold wind of disaster coming our way. I had what seemed like hundreds of scenarios playing in my head - why they hadn't called, why they would call, what they would say when we got there, what every little clue or gesture really meant. In the end, our appointment was calm and reassuring. As always, I have my full trust in her team of doctors; they are 100% on our team. As much as we all wished she would continue to be tumor free, we knew all along that this was a possibility - these tumors do not go away without a fight.
The brightest spot is that they are BLOWN AWAY by her recent development. Her doctor was taking her own videos of Scarlett crawling just so she could share it with everyone else. If you didn't know to look, you would never guess how much this little girl has survived. This tumor picked the WRONG kid to mess with.
From reading your posts and seeing cute pictures and videos of Scarlett, she is a tough cookie. I'm rooting for her and her awesome family.
I am so sad to hear this news! But the good thing is it has been caught small. Praying and praying the radiation works and Scarlett will be cancer free for life.
I have a prayer blog and I was wondering if I may share Scarlett's story on my blog along with a picture. http://cprezra823.blogspot.ca There are many faithful intercessors who pray every day. You can answer me here as I have clicked subscribe by email.
I'm aching over this. I'm so sorry that your family is experiencing this kind of set back. I don't know if it's of much help, but please know that there is someone in Utah keeping you in her thoughts.
I am so sorry you are having to deal with more of this.
I am truly hoping you don't have to wait and see UNLESS that is the best thing for Scarlett.
@child - we take all the help we can get. Thank you.
Thank you Brandi I will put up a post by the weekend.
Stay strong. It's a great thing that they are talking about the more focused radiation. Hoping and praying for Scarlett, she is very often on my mind.
I am so sorry to hear this Brandi & Chris. I've been following your blog for a long time and I was really hoping it would be nothing. Scarlett has touched my heart, she's just 4 months older than my own daughter, and I will be thinking of you all. I hope for the best possible outcome of this. Lots of love.
Sorry to hear this news, glad there is hope. Praying for you all.
Lord Jesus, i ask boldly that you touch this child's body and heal her from all these. Ithis i ask in faith, in Jesus' mighty name, amen!
Brandi, please check out my latest post about going natural. Read through it because it helped me with lupus nephritis. This might help scarlett too... Maybe... It's an option.
I have followed Scarletts amazing story since the beginning and she has proven time and time again that she (and her awesome parents) is made of something that most of us are not. I am so sorry you have to go back down this road. But I know that your incredible little girl is a fighter. She proves that every day and with every milestone. I will be praying that this new chapter is just a hiccup in the story of how Scarlett fought cancer and kicked its butt. Much love to you all.
My heart is breaking for you, your family and Scarlett. I'm from your birth board on babycenter and my daughter is around the same age. I can't even imagine how difficult this is for you. I'll be praying for everyone involved. Sending love.
Praying for Scarlett as always. I am so sorry that you got bad news, and that there is another tumor. She has been through so much (and so have you guys)that little princess deserves a break. So thankful for her rock star doctors who are keeping on top of all of this and that it was caught at a good time and can be monitored even more closely.
Hugs and prayers <3
I have followed your story from the very beginning! Scarlett is one tough cookie (as are y'all). I'm heartbroken to see this post, but encouraged by the determination of Scarlett and dedication of her doctors and family. Please know you have friends in South Carolina, whom you don't even know, always sending good thoughts your way!
My feet are firmly planted on Scarlett's side as well! I check your blog every morning for an update and keep your family in my thoughts and prayers. I am rooting for Scarlett all the way over here in Indiana. Love, hugs and positive thoughts from my heart to yours! <3
I am heartbroken at the news of the new tumor, and also at the idea that the decisions you made were for nothing. It's probably a natural course of thought in this sort of situation, but that doesn't make it true. Please don't beat yourself up.
Hugs to you, your husband, Scarlett, and your families, Brandi! I'm hoping for the absolute best. I've been reading your blog since the beginning. You're right - this tumor picked the wrong little kid to mess with. You've given Scarlett more life than nature had originally intended for her and for that no one can fault you and you should feel no guilt. We'd all do the same for our children when placed in the same position.
What discouraging news...I have been following and thinking of your family from across the country since Scarlett's first diagnosis. As always, you are dealing with this like a hero, Brandi. I admire your strength, which you have obviously passed on to your remarkable little girl. She is awesome. Rooting for Scarlett, Brandi and Chris! Go team!!
Jennie, Sean, Aidan (8), Ian (3) and Annika (9 mos) in Maine
I am so sorry! I have been waiting to read about the results. I was hoping for a oh it was nothing. She is an amazing little girl and has fought and come so hard! She will might this, you are right this tumor picked the wrong girl!!! Prayers coming your way!!
We will pray harder than ever, and even more. I know you are all fighters. I just wish you didn't have to go through this. God's blessings from Iowa.
Keep your positive outlook - I'm glad they are talking about a minimally invasive procedure as a possible solution! You are all in my thoughts often and in my prayers. xoxo
I am crushed for you as I read this. It does seem like you have a lot of positive news to concentrate on as well, but you just shouldn't have to deal with any of this anymore. It's just so unfair. Know that Scarlett has someone praying hard for her here in Philadelphia. She is an amazing girl who has done incredible things so far in her two years. You are right, this tumor picked the wrong kid.
Scarlett has never stopped amazing doctors and everyone cheering her on. I know this set back was one of the last thing you wanted for her, I hold a huge bucket of faith and hope that this is just another instance she will amaze the doctors and shine right on through this.
Sending her healing vibes and you both calming nerves :)
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