The last week has been a complete whirlwind for us! We had the 4th Annual EmmaStrong Drive for a Cure Golf tournament on Saturday, and then flew out to Boston on Sunday for a busy week of tests and appointments.
Emma had appointments with neurology and endocrinology on Monday. Both of those appointments went pretty well. Our neurologist wasn’t here the last two times we were here, so she was very pleased with Emma’s progress in her language development and her motor improvements in walking. We talked with her some about concerns about Emma’s ability to consistently be able to label letters and numbers and she suggested we have some additional visual field testing done in Nebraska or when we come back here. The endocrinology appointment went pretty well. Emma has put on a little weight this year and has grown a little. Her growth charts are trending slowly in the right direction, which is good. They ordered blood work to do an annual check for thyroid function, growth hormones and cortisol levels, as well as another bone age x-ray that they can compare to last years. We did those tests today, so we will wait to hear on the results of those.
Now for the important results you are all waiting for. We had Emma’s MRI scan this morning and met with her oncologist this afternoon. We were so very happy, relieved and thankful to hear that her scan shows that her tumor is stable and even slightly smaller in some areas. We were very nervous since this is Emma’s first scan since starting treatment again, and she has only been on the treatment about two months. Scanxiety is a real thing, and believe me we were all feeling it for the last week or so. It was a huge relief to hear Dr. Chi say things are stable and look good! Overall, Dr. Chi was pleased with Emma’s scans and overall progress. Emma has been tolerating this new treatment (Trametinib) well. The biggest side effect that she has had is dry skin and some different skin sores on her body. Dr. Chi took a close look at them and a med student from dermatology took a look at it too. Dr. Chi said all along this could be an issue with this treatment, and she felt her skin outbreaks were considerable. She doesn’t feel we should change anything treatment wise because of them, but we will now be meeting with dermatology tomorrow to try and get some other ideas of how to manage these skin outbreaks and make them less irritating for Emma.
Emma was really excited to get back to the hotel today. Brent’s sister Jennifer and her family flew into Boston today and will be here through the weekend. We were happy to go out to dinner tonight to celebrate with them, and are looking forward to hanging out in Boston with them the next few days.
We head back to the hospital tomorrow so that Emma can start Neuropshych testing. Since she is now 5, the doctors would like to complete a full battery of cognitive testing to get some baseline information and possibly provide more information about her learning styles and strengths. She will do that for 3 hours tomorrow and then we do another 3 hour session again next Monday. Lots of appointments and information to take in this trip, but so far it has all been pretty good.
We are so incredibly thankful for the positive results Emma got today. It has been an anxious few weeks leading up to these scans and we can’t thank all of you enough for your prayers, positive thoughts and messages the last few days! We could feel all of your love and support and we are so thankful because today’s results show that those prayers are certainly working!
We want to also thank everyone who participated, donated, and volunteered at the golf tournament last week. We were overwhelmed by the amazing support for this event, and we are so proud to report that after some initial number crunching we were able to raise $24, 000 for pediatric brain tumor research. Emma has the most amazing support system and we are so incredibly thankful to everyone who has joined us in this fight. Without you this wouldn’t have possible. Thank you from the bottom of our hearts!!