Strength & Gratitude – February 3, 2020

Emma with her Beads of Courage (photos courtesy of Brave Hope & Something New Productions)

The last two months have been a whirlwind and emotional rollercoaster. They have been some of the most difficult of this journey. It has been a reminder in the importance of living life to the fullest every single day, the blessings of what amazing friends we have and what an amazing community we are a part of, and of the power of prayer. January 2nd marked Emma’s seven-year diagnosis anniversary. It is crazy to think about all she has endured over the last seven years on this journey, and yet she continues to inspire us with her strength and perseverance.

It feels as if so much has happened in the last two months, that I don’t even know where to start or how to summarize it. As I have been contemplating what to write there are two themes that I keep coming back to as a I process through everything that has happened. Those two themes are: Strength and Gratitude.

Strength:

The time in the PICU at UNMC and at Children’s trying to make a plan for Emma was so incredibly hard and overwhelming. I’m not quite sure how we made it through, but I am sure it was the many prayers and outpouring of love that somehow got us through. Every step of this journey Emma has continued to show us what true strength is. Even on days where all she could do was blink answers to us or mumble “mom” or “dad” she somehow found the strength to push on. She is truly amazing! 

We discharged from Children’s Hospital about 5 days before Christmas and we decided that it was extremely important to us to have her home with our family for such an important time of year. Bringing her home made for lots of learning in how to care for her now, and made for lots of stressful moments for mom and dad as we navigated all sorts of new things to manage. When we brought Emma home she had very little head control or trunk control, couldn’t move any of her arms or legs purposefully, could only see changes in light, and required all of her nutrition be through her NG tube.

It was overwhelming and heartbreaking to see where she was, yet were incredibly thankful to be bringing her home. Christmas certainly looked different this year, but we were all here together and the holidays were filled with lots of love and family. We can never thank all of the special helpers who made Christmas happen by doing most of our Christmas shopping, wrapping our gifts and helping with food. We were in no place emotionally to be able to get Christmas together, but because of all of you we had an amazing Christmas together filled with love, laughter and time together.

Over the last seven years Emma has shown us time and time again what a strong girl she is and how perseverant she is. When we brought her home this time, we really didn’t know what to expect as far as recovery because of the extent damage from the stroke, the brain bleed, and all of the seizure and neuro-storming issues she was dealing with. To be completely honest there were multiple departments that pushed for Emma to come home on hospice care.  We were shocked to hear that even though there is such a thing as Pediatric Hospice, which allows continued care for disease if the family prefers, that the company we had available to us only used the Adult Hospice format.  Frustrating doesn’t even begin to describe what those emotions were like.  When we went home without hospice care she couldn’t do anything but lay in her beanbag and talk to us.  I can’t explain how difficult it is to watch your baby struggle like that. Emma though has an inner strength and drive that is truly amazing that allowed her to find her way through yet another battle. Slowly day-by-day she started to make small improvements.

It started with her starting to move her right leg and right arm more purposefully. Each day we would see little steps in the right direction. Slowly but surely those little steps have become big improvements in a fairly short time. Emma has regained good head control and her trunk control is so much better. She is sitting by herself for very short periods of time without support. She is moving both of her legs more, and she is able to purposefully move her right arm. She started by just lifting it to itch her nose, but now she moves it much more and is trying to do things with it.  A few weeks ago she started being able to squeeze our fingers with her right hand and now she is starting to be able to grasp and pick up some bigger objects. She was able to pick up and feed herself little mini muffins today. Emma has also been eating much better. She is doing a great job of eating solid foods safely. Thin liquids are still a little harder, but are getting better. She continues to need the NG tube to supplement what she eats orally, but mostly to get her liter and a half of fluids daily. Emma has even been up and standing and taking a few steps in her walker this week in therapy. We are absolutely mind blown by the progress she has made in the last few weeks!

The most exciting news though, is that Emma is starting to see again! It started with her being able to see colors, and tell us what color we were wearing. Over the last 2-3 weeks she has gone from seeing different colors to being able to see pretty well. She is seeing well enough that she is able to read some sight words and even read a short book to her teacher last week. We are beyond thankful and truly feel that God answered our prayers in helping her to see again. We took her to the eye doctor last week and he was absolutely amazed at the change in her vision. When we saw him in December he felt it was unlikely she would see again, mostly because the color of her optic nerve was becoming pale indicating it wasn’t getting the blood flow it needed. At her appointment her optic nerve was pink (normal). They don’t know why, but wonder if some of the pressure has reduced or if perhaps the pressure shifted allowing blood flow to the optic nerve again. The eye doctor said at the end of our appointment that sometimes the power of prayer is more powerful than the power of medicine. I think this is so very true about our little fighter! We are beyond thankful that she is seeing again. Your prayers are certainly part of how she has gotten here.

Emma did give us a pretty good scare about two weeks ago. We woke up at 2:00 am and could hear her moaning. When we went in her room, she was having a fairly considerable seizure. About 8 minutes in we gave her the emergency medicine we have at home, but it didn’t work right away.  We ended up having to call 911. The seizure lasted for a total of about 30 minutes, which was so scary as a parent. Luckily it stopped shortly after the EMTs got here. This of course earned Emma another short stay at Children’s for observation. We did a rapid MRI while we were there. The good news is the doctors don’t feel that the tumor has grown at this point. It also didn’t look like the bleeding in the tumor had resolved much yet either. They did think that the blood had slightly shifted, which may have caused Emma’s brain to be upset and cause the seizure. We have adjusted seizure meds and have new emergency meds that will hopefully work faster if we need them. Emma has luckily not needed them since coming home again.

The plan as of now is to look seriously at another inpatient stay at Madonna to continue to work on improving Emma’s skills. They are currently full, but are hoping to have a bed for her in the next few weeks. We will continue to enjoy being home together and keep working hard on her therapy here at home until then!

Gratitude:

Love these three!

All of this progress is truly amazing and we are so very thankful for it. The doctors said she would do one of three things: either not improve at all and continue to have strokes and seizures, become more stable, but not regain much function, or regain some function. We are thankful that right now she seems to be on the path of regaining skills. We do also know though that while she is improving, she still isn’t strong enough for treatment and because of the brain bleed can’t do treatment right now. We have to continue to pray that the tumor behaves because if it grows it could cause more strokes, seizures, or even increase with other issues. Emma is certainly making progress, but we also have to pray that the tumor remains stable enough for her to continue to heal.

The last month of being home has once again shown us what a fighter Emma is. The doctors weren’t sure what to expect, but she has certainly pleasantly surprised many of them with her progress. We are amazed daily by her strength and perseverance. Even when things are hard, she continues to push and fight. Getting her vision back has made her so much happier.  Through all of this though, she has hardly complained. She is just amazing! I can’t put into words how proud I am of her fighting spirit and loving personality. The last two months have also given us so much to be thankful for. We are filled with gratitude to God for leading Emma on a path of recovery.  We are so thankful for all of the little things we were scared we wouldn’t see or hear again. We are grateful to hear Emma say our names, to hear her giggle, to talk with her, and to hear her say I love you. These are all things we prayed we would hear again as Emma laid in the PICU, and thankfully those prayers were answered.

We are also forever grateful to Pediatric Therapy Center, where Emma has gone to therapy for 7 years now. One of the pieces we were struggling to figure out when we brought her home was therapy service. PTC has been on this journey with us every step of the way for seven years, and has gone above and beyond in making sure we could get services for Emma and has worked so incredibly hard in creating a plan for to help her regain skills and strength. We are forever grateful to them for all they do for Emma! She would not be making the progress she is if it weren’t for them.

The gratitude we have does not end with our thankfulness for Emma’s improvements though. We could NOT have made it through the last two months with out our amazing support system, our community and the prayers of all of you. No one would ever wish to be on this journey, but I can tell you that we feel so blessed! When we were struggling the most, we have been lifted up by so many. There will never be enough words to thank everyone for everything that has been done for us. We are overwhelmed and thankful beyond words for the support of our school communities (Carriage Hill, PLSHS, Walnut Creek and all of the PLCS district), our neighborhood, the community we live in, and all of you that follow Emma’s story near and far. I am so far behind on thank you notes that I’m sure I will never get them all done for everyone, so to everyone who has helped in some way, come to the benefit or prayed for Emma, know how much we appreciate it and how thankful we are to you!  We have truly seen what the power of prayer can do! Thank you!

Updates and New Treatment – October 17, 2019

We can’t thank Walnut Creek and PLCS Community Schools enough for what they have done for our family.

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.

Emma and one of her favorite visitors up at Madonna Rehab – Sophia!!

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!

Emma was so happy to get back home after being gone for more than a month.

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!

If you can ignore the K-State gear Emily is pretty awesome.

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!

Emma went from not being able to sit up or feed herself to riding a “horse” in therapy. She is amazing.

August 27th, 2019 – Scans Tomorrow

The Gehring crew had a great summer and we are settling back into the school routine. We were so thankful for time this summer to relax and getaway to enjoy time together. Emma started 2nd grade a few weeks ago, and is loving it! Summer flew by and now we find ourselves back to school and back to Boston for scans and routine check-ups. It seems hard to believe that three months has gone by, but here it is time to scan again. 

Emma Playing in Boston after a day of appointments

We are feeling a little nervous for scans this time. Emma had minimal growth on her scans in June, but since she had only been on treatment for about 6 weeks at that time it was too soon to determine if the chemo was working or not. Emma has been on treatment now since May, so these scan results will give us information on if this treatment is working or not. We are praying for good news because overall Emma has been handling this treatment pretty well. She takes the pills at home really well, and the biggest side effects we have had are increased fatigue, some low white counts, and more UTI’s. The first two cycles Emma’s white counts were low for a few weeks and we had to hold treatment for 1-2 weeks. After that, Dr. A, reduced her dose and her counts have been good. She has actually gotten more chemo per cycle since reducing the does because she can take it the whole cycle. Since Emma is doing pretty well overall, we are really hoping that this treatment has kept the tumor stable so we can continue with it. 

Emma gave us a scare this weekend. When she woke up on Sunday she could no longer sit up by herself, which is a really big neurological change for her. We took her to the ER in Omaha and they did several tests. They think her shunt is working fine, but they did find a really bad UTI. They said that UTI’s can cause some crazy changes that can appear to neurological. We are hoping this is true, but of course when we see changes like this it makes us very, very nervous. Emma is still having difficulty today with sitting by herself and balance. The good news is that we had an ophthalmology appointment today and they said her visual acuities, pupil reaction and optic nerve all appear to be stable since her last exam, and that there doesn’t appear to be any increased pressure on her optic nerve (which could indicate shunt malfunction). 

Throwback photo to Emma with her friends at Camp CoHoLo

With all of the changes we have seen in Emma the last few days, we are all feeling a little extra anxiety about tomorrow’s scans. If you have time please say a few extra prayers for stable scans, good news, and answers to what is causing these changes tomorrow. We will try and get an update written later tomorrow with the results. Thank you so much for all of your continued prayers and support! Much love from all of us!