This week has been a little crazy thanks to Scarlett's knack for surprising us at every turn...like always, it's her show, and we're just trying to keep up!
Last week, she had her scheduled MRI. It was clear of any tumor (yea!). It was not, however, "normal". I learned this at her clinic appointment last week, where I thought we were just going to do the regular labs and check-up; apparently, our NP thought she gave Chris a heads up when she called, but all he really absorbed was that the MRI was clear - can't blame him on that! It turns out we had a little more to discuss.
After we covered the basics - feeding, medications, generally well-being - she pulled up the MRI images on the computer. Once again, I could tell immediately that there was something off about what I was seeing. What was once a very balanced looking brain scan is now lopsided. Here's what happening (as best as I understand it, at least):
Scarlett has almost no left brain hemisphere. The small portion of left hemisphere tissue that did grow around the tumor has begun to shrink; it is assumed that it is not very useful. Her right hemisphere does everything that needs to be done for both sides, and it is growing. The growth is normal and healthy (yea!) but it is being complicated by the shunt. Her shunt is over-draining spinal fluid from the empty cavity in her head, therefore not putting any pressure on the growing right side. This has led the right side to follow the path of least resistance and grow onto to the left side of her skull. Her head circumference has not changed in almost a year, since the swelling from surgery went down. This is because brain growth stimulates skull growth; with her brain growing into the other side, it is not creating the pressure to stimulate skull growth. Since the caved in left side is still very flexible, the change in brain position is causing the bones to shift, resulting in the lump on her forehead. In addition, a portion of the healthy right side is beginning to rotate on itself as it grows into unrestricted space.
In a normal brain, this would be very bad. Any neurosurgeon would panic at the sight of the scans. Luckily, they weren't shown to the surgeons until later. The Scarlett twist is that the little miss is showing absolutely no symptoms of this change. We are on the lookout for neurological changes - sleepiness, irritability (beyond the three teeth breaking through right now...), eye responsiveness, weakness, etc. - but we're otherwise in a holding pattern.
Eventually, something will have to be done to the shunt. We're hoping it can wait until her reconstructive surgery in the summer so everything can happen at one time, but it will depend on what happens over the next few months. A variety of options have been discussed, including stopping chemo after the current cycle to get her closer to surgery, but we will just have to wait and see. It is always best to avoid extra surgical interventions when she is in chemo. However, if it needs to happen, it will.
Now, how many of you know that much about YOUR kids' brains? :-)
I find it absolutely impressive you absorb so much that the doctors' are telling you and you're willing to share that knowledge with the rest of us :)Glad that Scarlett is still doing all right considering her current brain status!
i love these super descriptive explanations of what is going on inside Scarlett's miracle body and how every "odd" finding is just part of what makes her story so fascinating!
thank you for sharing, Brandi!
Praying for your little Scarlett and your family always!
You are a phenomenal mom ... just want you to know that another mom out there in cyberspace is continuously in awe of you. Keep up the great work; Scarlett is lucky to have you two.
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