First, I want to thank everyone for all of the messages, texts and prayers today. They really do help to get us through scan days. These days are long and stressful and we are so thankful for all of the positive thoughts that lift us up.
It was another long and busy day of appointments for Emma today in Boston. We had an early start with a 7:15 arrival at MRI. Things went well with scans and she woke up happy after the scans. We had some time to sit and wait before our appointments, which is just about enough to drive you nuts. We saw oncology, neurology and neurosurgery today (we saw dermatology yesterday). We had decent news today. Her scans showed that she had some small growth on two of the nodules of her tumor. The main tumor remains stable. The growth of the one nodule they are not worried about, but the other nodule is located near her optic nerve, so they are a little more concerned about watching it’s growth. We talked a great deal with all of our doctors today about our plan now. They feel the growth right now is small enough that we can continue to stay off treatment for another month or two and let Emma continue to heal from the skin reaction and surgery. Dr. Chi, our oncologist, is a little more concerned about the nodule near the optic nerve and wants to see how Emma’s vision exam in a week and a half looks. The plan is that we will see if her vision remains stable from our last visit after surgery. If that is the case it sounds like we will wait two months and come back and scan again and then look at starting treatment again. If the ophthalmologist feels her vision has worsened then we will probably look at starting chemo sooner. The doctors would like to give Emma’s skin more time to heal so that when we restart chemo it is less likely to make her skin flare up; however, if her vision worsens they feel we will have to start to protect her vision and hope her skin is ready. Dr. Chi says we will restart the Trametinib that we were on, but at a lower dose and she is hopeful that will be effective yet and that her skin won’t react. The next time we come back for scans it sounds like we will have a full few days as they would like us to see dermatology, endocrinology, neurology, oncology and ophthalmology that trip. Dr. Chi is also concerned about the back pain that Emma has been complaining about. It could be from inactivity, it could be a side effect of the steroids, or it could be from small fractures in her vertebrae, which apparently is a common side effect of prolonged steroid use. We are going to continue to monitor this and if things get worse we will probably have to have some imaging done and then consult with endocrinology. We are hoping that she doesn’t have any stress fractures and that it is just from lack of activity. Only time will tell.
All of Emma’s doctors agree that she has lost a lot of skills that she had due to set backs from the drug reaction, steroid side effects and surgery. They said it is probably going to take a few months for the puffiness to subside, but they hope the longer she is off the steroids the better she will start to feel. They are hoping that as she feels better, she will make progress in regaining several of the skills she has lost. The neurologist has recommended ordering new AFOs because she is unable to wear her current ones for longer than an hour or two because of the swelling in her feet. Dermatology yesterday was pleased with the progress on her skin and that it didn’t flare up again after stopping steroids. She made a few adjustments to meds and creams in the hopes that we can slowly get her off the Cyclosporine she is on. She is hoping that her skin will continue to improve over the next month or two.
I always feel so overwhelmed by these days. It is always so much information to process and take in. The news today was ok…not awful and not great. I guess we will take it. Things are stable enough at the moment that the doctors don’t feel we have to do anything immediately; however, we know the tumor is growing slightly and that we have to watch very carefully for changes so that things don’t get worse. It is a fine line of knowing how long to let her heal, but still knowing when we have to start treatment so that the growth of the nodules do not continue and eventually cause more problems.
Thank you to everyone who prayed for us today and sent messages of support. I continue to be humbled by the number of people who support us and I am so thankful for the support as I read the messages that are sent. So thank you, thank you, thank you for lifting us up in prayer and keeping us EmmaStrong! We love you all!!