It has been a crazy and overwhelming 6 weeks since we last updated on Emma here. It feels like so much time has passed, but it has all just kind of been a blur. I’m sorry that it has taken so long to get an update written, as I know the last one left a lot of unanswered questions and concerns about how Emma was doing. The good news is she is doing well now; however, it has been a long 6 weeks. As we have gone through this journey with Emma the last 7 years, there have certainly been good times and hard times. Unfortunately the last few weeks have been a little more of the hard times. We have been blessed by an amazing outpouring of love and support through it all, and can’t thank everyone enough for all they have done for us!
After the last MRI 6 weeks ago, the plan was to extend our stay in Boston a few days to have a MRA done and get more information on what was causing all of the neurological changes we were seeing in Emma. We were able to get that scan done and then went ahead and flew home the next morning as the doctors told us to. When we got back home, Emma’s motor skills continued to deteriorate. She was unable to sit up, couldn’t pick things up well with her right hand, couldn’t feed herself, was experiencing slurred speech and word finding problems, and couldn’t even hold her head up at times. The day after we got home we called the doctors in Boston back and they said we needed to take her to the ER to have her neurological skills examined. So we took her to the ER at Children’s in Omaha, where they admitted her to the hospital. The doctors spent some time looking at the MRI and MRA results and talking with our doctors in Boston. It was confirmed that Emma had a stroke like event caused by the tumor putting pressure on her carotid artery and impeding the blood flow to the blood vessels in the periphery of the left side of her brain. This is what was causing all of the neurological changes on her good side. They started running fluids over night through Emma’s port and started her on a daily dose of aspirin to help thin her blood and improve the blood flow in her brain. Dr. Schwartz, who was the oncologist on the floor at Children’s that week, also thought we should strongly consider sending Emma to Madonna for intense inpatient therapy to regain the skills she lost.
We weren’t overly excited about the thought of another inpatient rehab stay, but it was definitely what was best for Emma, so that is what we did even it was going to be really hard on the rest of the family. Emma was admitted to Madonna in Omaha on September 5th. While at Madonna Emma had 3 hours of PT, OT, and Speech therapy everyday, as well as a half hour of tutoring for school each day. Many days she also had other things such as pool therapy and rec therapy. She was one busy girl while she was there. We were lucky that we were lucky she was able to do an inpatient stay and receive such intense therapy, and it certainly paid off. It was a lot of work for Emma, but by the time she discharged on October 3rd (4 weeks later) almost all of her motor skills had returned to baseline. Her speech sounds great again, she is sitting, picking things up, feeding herself, and scooting around just like she used to. The biggest difference we still see is her endurance for walking. She was walking over 600 feet at a time before, and now getting a 100 feet is hard. She is still working hard on it though, and we are hopeful with more outpatient therapy we will continue to see her walking improve.
The stay at Madonna was certainly what was best for Emma, but was yet another reminder to us of how much this disease can turn your life upside down. The last time Emma stayed at Madonna was 5 years ago in Lincoln, and that is a time we look back on and wonder how we survived. I suppose a year from now, we will also look back on this stay and say the same thing. This time though, things were harder in some respects because Emma knew she was wasn’t able to leave and she missed going to school and being with her friends greatly. We had to deal with a little more of her knowing things were different. We also have two boys who very much realized life was a mess as there were different people picking them up everyday. Brent and I continued to work full time (or as full time as we could manage) in order to try and save our leave for upcoming trips to Boston for treatment, which means we are indebted to many amazing family members and friends who helped make everything work while Emma was there. Every night either Brent or I would stay with Emma, and leave Madonna by 7:00 am when either one of our parents or my cousin Carol would be there to stay with Emma while she went to therapy all day. Then after work one of us would head back to stay with Emma that night. And somewhere in the middle of all of that was getting Aiden and Easton to all of their activities and trying to keep their lives somewhat normal. We can never find enough words of thanks and gratitude to our parents, Haley, and my cousin Carol because without them we could never have made all of this work for Emma or the boys. Needless to say, when Emma was discharged from Madonna, we were all so very excited and happy to all be home together again!
As far as treatment goes, we have good news! Emma was approved for compassionate use of the trial drug TAK 580 and while it seemed like it took forever for all of the paperwork to clear the FDA and hospital boards we finally ready to start. We are actually currently in Boston this week for tests and scans and to have her first dose of the medicine. We had a meeting with Dr. Chi on Tuesday to go over information about the medicine, sign consent and have Emma’s physical. She had and EKG, echocardiogram, blood work , and an MRI done yesterday. The MRI showed mostly stable results, only small amounts of growth in some places. The scan did show one new spot, which is disheartening, but they will continue to watch it. Today we went to clinic and Emma had her first does of TAK 580. She takes 5 pills, once a week for this treatment. She did great taking it and so far has seemed to feel alright today. It sounds like the main side effects are changes in hair color (gray), changes in skin pigmentation, some skin issues such as rashes, swelling/retaining fluids, elevated liver enzyme numbers, and maybe a little nausea after taking the meds. She had her first dose today, and we got the meds for next week to bring home with us. Her liver enzyme numbers were slightly elevated today before starting the med, so they are unsure why that would be and are a little concerned because the new medicine will only make this worse. We will come back to Boston in 2 weeks for another checkup and then two weeks after that. That will be the end of the first cycle, so after that we will only have to come monthly for check-ups and to get meds. This drug was designed to attack BRAF duplication, which is what Emma’s tumor has. We are excited for the opportunity for her to use this targeted treatment, as she is only the 11th patient at Dana Farber to use this medication. We are hoping and praying that this medicine will do it is supposed to to help control the growth of Emma’s tumor and that the side effects are minimal so that she continue with it.
We really need to be better at updating because I feel like I just wrote a ton of information. The part I haven’t said much about is how even though the last few weeks have been incredibly hard, we have been blessed with such amazing support from so many. I can’t even begin to list all of the people who have been a part of helping us get through the last few weeks. Once again the Papillion-La Vista Schools community has lifted us up and helped us through some very hard days. A special thank you goes out to our Carriage Hill and Papio South staffs who have been so generous in providing us meals, mowing our yard, cleaning our house, having a staff tailgate party for Emma and our family, and for helping keep Brent and I afloat at work. We also want to say a very special thank you to Walnut Creek Elementary. Our family has been humbled and overwhelmed by the kindness and generosity of the Walnut Creek students, staff and families. The school held a penny war for Emma and the generosity of our kids’ friends bringing in their money from piggy banks to support their friend was truly moving and amazing! Emma’s classmates have been so wonderful to her and we can’t thank the enough for being such great friends to her. They celebrated her return to school with a donut party, which was perfect. I hadn’t seen Emma smile like she did after going back to school in weeks. There will never be enough words to capture how thankful we are to everyone who has supported us and helped us to get through these last weeks. We are beyond blessed to be part of such a special community! Please know how much we appreciate everyone and everything that has been done for us!
I have said this many times over the last 7 years, but I still find it to be so very true. In our hardest days on this journey, we have blessed with such amazing kindness, generosity and support. It is these acts of kindness that continue to lift us up and give us strength. While the words “Thank you” never seem like enough, please know how thankful we are to each and every one of you for your love and support! We could not be EmmaStrong without you!
