We're settling in. Scarlett is recovering well. She is still on round-the-clock morphine, but we are working on weaning her to Tylenol. Last night, she got pretty feisty, kicking her catheter line out several times (requiring full bed changes), pulling off the bandages on her head, and eventually wiggling free from the arterial IV line, the one that took over an hour with three anesthesiologists to place in surgery yesterday (the anesthesiologist later came to tell me it was her most difficult IV placement. Ever.) She finally settled down and I fell asleep around 11, to then be woken at 2:00am to be moved to a different bed spot in the PICU. I groggily carried my bedding across the unit to the quieter, more spacious side, and settled back in on the squeaky sleep chair. Around 5, they decided to draw labs, but they couldn't get any blood through the remaining IVs, so I awoke to Scarlett screaming as they pricked her toe and heel to get enough. At 7, rounds began, so I was on deck to talk with doctors and get the plan for the day.
This morning, Scarlett had a follow up MRI to make sure every trace of tumor was removed. We haven't seen the surgeon yet, but we heard he came through the PICU while we were out and told the nurse it looks good.
We are in a daze. As much as we thought we were prepared for new tumor growth, I am finding myself at a loss for clear thoughts. I am sure the fatigue is partially responsible, but I can hardly keep my mind focused on one thing. We spoke with the neuro-oncology nurse practitioner who has been with us from the beginning. She is in communication with the surgeon, and they are already working on getting scans sent over to have on hand. She wanted to check in on us, and to let us know that there are still many options. Hearing the details, though, hit home.
She suggested we push to have a port placed back in Scarlett's chest if she continues to have IV problems. If we're going to need it anyway, we might as well save her pincushion experience and do it while she is already in the hospital. And then she stopped short to say she was assuming we wanted to proceed with treatment.
Is there a choice? I know there is, though I can't imagine choosing to give in at this stage. Yes, we will proceed with treatment.
She did not mention any specifics, but that we will have to wait at least 2-3 weeks for Scarlett to heal from this latest surgery before proceeding. She asked about my work schedule, when my vacation begins and when we can come to Palo Alto to talk further. She said we will have to look at balancing aggressive treatment with quality of life.
Quality of life.
How did we get back to this place? How is this happening again? I was so sure, so convinced that we had left these questions far behind. She has been doing so incredibly well. Two years ago (almost exactly, as it happens) we were faced with these questions, and there was no time to decide. Plans were made faster than we could blink, and it made things easier to not have to think about it. Now, we know so much more...we know the challenges of treating Scarlett, the challenges of bouncing between hospitals, the risks of infection, of further developmental delays and of permanent damage from treatments that may only give her a short time before we are right back where we are now.
I know too much. I cannot forget or ignore what I have seen, read, and learned over the last two years. I have seen countless other families be faced with watching their children, their babies, die in their arms. Keegan, Jessie, Bree, Talon, Zac...all gone this year, and they are just a few. I have read about their last vacations, their last days and the emptiness of the days, weeks and years after. I can hardly swallow, hardly breathe when I think about facing that with Scarlett. Not after everything we have been through already. The image of her slowly fading before my eyes continues to flash through my mind, and I can't help but cry.
This is not fair. Not for anyone who had done it before us, not for us, not for me. Not for Scarlett.
Our plan is to meet Monday, pending Scarlett has been discharged. Hope is not lost - there are options. We will learn more about them and make some decisions soon. Scarlett's case will be discussed at tumor board at two different hospitals, including doctors consulting from even more hospitals. I have already asked for any information available from the Pediatric Brain Tumor parent group, the biggest network of parents I have found for learning about the most recent research, treatments and approaches from around the world.
My greatest fear is that this is the beginning of the end. It's a premature thought, and I am not giving up. But I can't deny what I have seen.
There aren't words to describe what I want to say, so just know that we are here. We, all of us, are here with you.
I can't imagine your pain. I'm so sorry you and your family are back here again :( I will be praying for Scarlett and your whole family.
The amount of love I have for this little girl (who I have never even met) is overwhelming. My heart breaks that she must continue to fight. All three of you are awe inspiring.
I have no words that could even begin to make you feel better. Just know we are all here,and we are listening.
Scarlett's life, however long or short it may be,matters.
I am so very sorry. And you're absolutely right. It's not fair.
All I can say is I will pray. I can't imagine the amount of pain you feel for your baby.
Yes this is a rough road and one nobody wishes to be on once let along twice. I just ache for what you must face and go through.
Sometimes lack of knowledge is better. Please try not to worry, you are doing everything you can to rectify this. Worrying will only stress Scarlett out and she needs you to be there for her and it will only lower your resistance to colds and flues that you don't want to get.
Praying and praying for you all.
Oh Brandi, I'm so sorry you have to make these choices. I am thinking of your family and hoping Scarlett is back to herself quickly.
I am a longtime reader, and this is my first comment. This post breaks my heart. I so hope that the "quality of life" type of discussion is replaced with talk of a treatment option that gives much hope! Your family has been through so much. I have 15-month-old twins with some health problems (Osteogenesis Imperfecta and one with clubfeet and craniosynostosis and possibly Muenke Syndrome), so I have admired your tenacity for educating yourselves about Scarlett's condition and pressing forward when the weight of the world is on your shoulders. Sending you big hugs from Kansas!
I have been following Scarlett's story from the beginning. I have an Oct 2010 baby also. I can't imagine the pain you have been going through for the past 2 years. I'm very sorry! We were not meant to have to see our babies sick. God does promise to wipe away sickness and suffering very soon. Please feel free to email me with any questions and I would love to provide you with some encouragement from the bible if you are interested. email@example.com. Also, I'm not far from you in San Jose and I would love to help out with something even if its just a meal.
Oh, I'm sick to read this. I am so sorry. There are no words.
Sending hope and strength.
I'm continuing to pray for Scarlett as well. I wish I had words to make it all better, but nothing can. Prayer ascending.
Sending prayers and thoughts for your family. Offering whatever hope you can find. There's a strong community rooting for Scarlett even though most of us have never met her.
Love the quote as the blog header. It is so true. She is a fierce fighter. And so are her parents!
It's not fair to your baby or any baby. She deserves better. I pray you can keep those negative thoughts away. They can run away with you. I'm keeping you in our prayers with my October 2010 girl, too.
Saying prayers for your sweet baby tonight!!
thinking of Scarlett and sending love and strength to all of you
I'm so sorry this is happening to your family. I have read your blog from the beginning and cried for your daughter many times. Know all of you, especially Scarlett, are in my thoughts and prayers.
I am so deeply sorry your family has to travel this journey again. I pray God gives you the strength you all need as you move forward.
::hugs:: to you, Scarlett, and your husband, Brandi. I love the quote you have now placed at the top of this blog - so fitting. Don't forget it and let it give you strength and hope. I hope the holidays are as enjoyable as possible for you this year. Your family will remain in my thoughts!
I, too, have been a long time follower of Scarlett's story and check in on her every single day. I remember the day news spread about her on Babycenter and how heartbreaking it was for mothers all across the country. This is my first time commenting, but I feel that I have to. I can sense your uncertainty Brandi, and understandably so. But just know that your baby girl has so many people praying for her and hoping with everything they have that she pulls through all of this. No child should have to endure this type of struggle, but she is a miracle with amazing strength and tenacity. I continue to pray for you all... and mostly for Scarlett as she fights this latest battle. *hugs*
I have been following your blog since the beginning of your journey and am constantly checking on how your Scarlett is doing. She is an amazing little girl. I am so sorry that you are facing these hard decisions. I will keep you and your family in my thoughts and prayers.
Oh, I know you don't know me, but I feel like I know you and your family, and my heart breaks for you to read your post today. :'( Please know that I am just praying so hard for Scarlett to heal and and recover. And I am praying for you, Brandi and Chris, that you have the strength to face whatever it is that lies ahead. I know that you will fight Scarlett! She seems like such an amazing little person!
Oh honey, I'm so very sorry from the bottom of my heart to hear this news. Your words are heavy and so real. Few can understand what it is to be in your shoes. Just know you have thousands upon thousands of people who feel they know and love you and your family so dearly and pray for you each and every day and this is something that is very powerful. Thank you for continuing to share your lives with us as difficult as it can be at times. You are so very brave, there truly are no words for what you are doing to make strides every day for Scarlett and other children affected by cancer. I wear a bracelet each day and talk about it as much as I can. This is because of you.
Though I cannot even begin to process what you are going through, I just wanted to let you know that your family has been in my prayers since the first time I read your blog. I've been a faithful reader since the beginning (I'm a baby center mama too), and Scarlett's story has been in my heart and in my prayers ever since.
You are so strong to share your story with the world. I don't think I would be as courageous if I were in your place. I will keep praying for you and Scarlett.
I'm so sad for you, and what you have to go through again. Life can seem so unfair at times. You, Scarlett and Chris are in my thoughts constantly. I hope only the best outcome for you. Stay strong even when it seems impossible.
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