It is hard to believe that three years ago today everything in our lives changed. Three years ago today was the day Emma was diagnosed with a brain tumor. These are words that no parent ever expects to hear said about their child, in fact words no parent should ever have to hear said about their child. In some ways it seems like just yesterday. We remember everything about the heartache, pain, fear and disbelief of that day. All of those emotions come rushing back and seem as raw today as they were three years ago. I remember the feeling of not knowing how we would ever go on, move forward and keep living after that day.
In other ways though, it seems as if three years ago was almost an eternity. When you think of all that Emma has endured during that time and all we have been through, the last three years have certainly been a test of strength, faith and endurance. I am truly amazed by Emma and her strength each and every day. In her short three and a half years of life she has been through more than any child should have to experience, yet she goes through all of this with perseverance, strength and a smile on her face. In three years Emma has endured two major tumor resections, three shunt surgeries, two port surgeries, 15 MRIs, 3 years of chemotherapy (5 different treatment regimens), two inpatient stays at Madonna, and hours of therapy every week. She doesn’t even remember a time in her life when she wasn’t on chemotherapy. I really am in awe of her strength and ability to fight daily with a smile on her face. She has taught us so much about life and what is truly important.
This of course is not the path we would have chosen for Emma or the life we envisioned for her when she was born. There are still times where the what ifs, whys, and anger are still here, but thankfully not as often as three years ago. We know that Emma’s diagnosis has taken a lot from her and us, that it has left scars on us, it has changed us, and that it has challenged us in ways we never imagined. It would be easy to dwell on these parts of the diagnosis. We choose to not focus on these parts, but instead on the hope, graciousness, love and positives that we have learned along the way. The days are not always easy, but we have learned so much about life, living life to the fullest, and hope from Emma. We may not be the same people we were three years ago, but in some ways I like to think we have grown. Emma’s diagnosis has taught us that you can’t take anything like time or health for granted and that you must live each day to the fullest and fill it with love and laughter. We have had our faith tested, but even in the hardest times, God has shown us so much good through all of you. We have been so blessed with the support of our family, so many wonderful friends and the many people who we have never met who pray for our sweet Emma. Even now, three years later we are still being blessed by the kindness, generosity and graciousness of so many people. It is the support of all of you that helps to give us hope and stay strong for Emma. We are so incredibly thankful and feel so blessed to have the support of each and every one of you.
I know it has been awhile since we wrote an update and many of you are wondering how Emma has been doing. We finally got test results back from her bronchoscopy in mid November and they determined that she had a bacterial lung infection. They said she may have had a bug of some kind that was then worsened by a bacterial infection. They aren’t completely sure what caused it, but said she could be aspirating saliva while she is sleeping. They don’t believe she is aspirating food since there were no lipids in her lungs. After figuring out what the problem was, we got her on the right antibiotic and she was feeling better in a few days thankfully. Dr. Abromowitch decided Emma was finally healthy enough to start chemo again the week of Thanksgiving, so we had a low key Thanksgiving at home while Emma did her oral chemo meds. She struggled a little more this time with nausea, but being the strong girl she is made it through. She was also able to go back to school for the last three weeks before Christmas break, which she was so very excited about. Emma absolutely loves being with her friends at daycare and preschool. Emma made it through this cycle of chemo with her counts staying pretty good.
We are very thankful to have had a wonderful Christmas together. We spent lots of time with family and enjoying time with our kids. It was a much needed and appreciated break from the craziness of work to spend together as a family. Both Aiden and Emma had a great Christmas and had lots of fun opening presents and seeing their grandparents, aunts, uncles and cousins.
We also of course managed to squeeze in several doctors appointments over break. Emma has been struggling the last 3-4 weeks at PT and OT and was seeming to have some new pain possibly in her hip. We had x-rays done two days before Christmas and they showed that Emma has a condition called Coxa Valga, which is neuromuscular hip disease where the shaft of the hip bone is at an angle that is greater than 140 degrees. The doctors felt this could be causing her some additional pain. We don’t have a lot of information about it yet, but are hoping to learn more while we are in Boston next week. Emma also had an appointment in Lincoln this week, where she got a new dose of Botox in her left thumb and ankle. We saw some great benefits from her last dose of Botox, and it had become very apparent that it had worn off, as Emma was having a lot more tone and pain in those areas. Dr. Kafka at Madonna who does her Botox said he didn’t think the Coxa Valga looked severe at this point. He said he would like to see if the Botox helps relieve some pain and encourages Emma to weight bear on her legs more, which could help improve her hips. On the bright side we are already noticing a difference from the Botox and are so glad it has given Emma some relief.
Emma unfortunately has also picked up another cough and cold. We took her into her pediatrician this week and they put her back on an antibiotic and Albuterol breathing treatments again. He said her lungs sounded crackly and wheezy again. Not great news, but we are hoping this will help her improve quickly so that her lungs are healthy enough for scans next week.
Emma has now finished her 5th cycle of the TPCV chemotherapy regimen. We were supposed to scan when Emma was in the hospital in November, but since her lungs weren’t very good she couldn’t be sedated or taken to Boston for scans. Dr. Chi in Boston decided to go ahead and complete one more cycle of chemotherapy and then scan. That means we are headed to Boston next week for MRI scans. We will scan on Wednesday, January 6th and then will meet with some of our doctors in clinic that afternoon. Dr. Chi, our oncologist is out of town until Friday, so we will stay in Boston so that we can meet with her Friday before flying home on Saturday. It isn’t ideal, but we are thankful it worked out to catch all of the doctors over a few days during the holiday season. We of course are nervous and scanxiety is settling in as we prepare to leave for Boston. We are trying very hard to be hopeful for good results, but know that this is not a guarantee. We would really appreciate a few extra prayers for positive scan results next week from all of our wonderful prayer warriors.
As we start 2016 we pray that this will be year filled with positive results, progress, time with family, much happiness and love, and most of all a CURE for the many kids fighting this awful disease. Thank you to each and everyone of you who supports us, lifts us up in prayer and keeps us EmmaStrong!!