(Go Huskers! Emma leaning against the wall and standing by herself)
I have been meaning to sit down and write this update for the last week and a half, but somehow time just keeps getting away from me. I know so many of you who follow Emma’s story have been asking how she is doing since last time we updated the site she was in the hospital. Since the last update we found out the Emma had an influenza virus which is what caused her counts to drop. While she was in the hospital the lowest her ANC got was to 10, which is very low. But Emma is a fighter and fought back. On Saturday her counts came back up to 120, and by Sunday it had come back up to 540. Over the weekend the doctors determined that the blood culture that had come back positive for staph infection was a contaminant since none of her other cultures came back positive, which was fantastic news. Since she had been fever free for a few days and her counts were coming up they sent her home on Sunday, August 18th. We are always so thankful when Emma comes home from a hospital stay. It just doesn’t seem right at the house without her here. We are also reminded with each hospital stay how lucky we are to have such supportive friends and family. Because Aiden had a cough and runny nose he couldn’t come to the hospital, which means we either find a place for him to go or one of us has stay with him and not see Emma. We send a special thank you to our parents, my cousin John and his wife Carol, our daycare provider (Miss. Melissa who kept him late one day), and everyone else who sent meals and prayers of healing for our sweet Emma.
When they discharged Emma on Sunday, the doctors said to bring her in for her chemo appointment on Tuesday so they could check her out and do counts again, but they didn’t think her counts would be high enough to do chemo Tuesday. So I took her in Tuesday expecting to be back at work for a meeting after school, but in true Emma fashion she surprised us all. Emma’s ANC was 2000 and high enough to receive her second treatment of her new chemo regimen of Avastin and Irinotecan. We waited a long time for her blood counts to come back and then we had to get a urine sample from her which is quite the ordeal with a 15 month old so that part of the process took quite awhile. She received both of her drugs over about 3 hours. The whole process took about 8 hours, but they said it shouldn’t take that long every time. We didn’t care though, we were just thankful she was well enough to have the treatment. Grandpa Gehring even happened to be in town so got to keep Emma and I company for most of the afternoon. Emma tolerated the chemo well. She had no diarrhea and her appetite was only slightly effected (which could have also been a lingering effect of the virus). We are hoping this chemo regimen will be easier for Emma to tolerate.
We continue to work on figuring out what adjustments we will need to make in Emma’s childcare when the new Medicaid laws take effect in October. Thankfully the same girls can continue to watch Emma, however, the out of pocket cost for us to have her watched at our house will increase substantially. We are currently working on finding places for the girls to watch Emma during the week. At times it seems so hard to jump through all of the hoops to get things done, but in the same sense what else can you do? At least we know that Haley and Gina will still be able to watch her, which is such a blessing because they are so good with her and take such good care of her.
Emma has been doing great since she has been out of the hospital. We continue to see small gains, even after a five day stay in the hospital. Her newest accomplishments include starting to spin herself around while sitting by leaning on her right hand, moving both legs to the side and sliding around. This is the first real attempt she has made to independently move herself in the upright position. She continues to get stronger and her walking is improving. She still needs support to keep her balance but is doing a great job initiating steps. She also has shown a little interest in using a straw in her new honey bear cups. She has been so happy this week and seems to be feeling good. We are enjoying only doing chemo every other week, because after a few days of not feeling well she starts to be herself again and we get to see it for over a week now. With her old regimen just about the time she started feeling better we went in for chemo again. It is such a blessing to us to see her bubbly personality more often now. She has enjoyed having Aiden home with her this week since his daycare is closed. As we have gone back to school and tried to get back into the routine of balancing work and home, I am reminded of how lucky we are to have such amazing people supporting us. I can’t tell you how much it meant to have so many students, families from school, and members of our staffs ask about Emma and tell us that they have been following her story all summer. It means so much to us that each and every one of you who reads these updates takes the time to follow Emma’s story and support us.
This week marks the beginning of September, Childhood Cancer Awareness Month. Before this year I knew there were many families effected by this horrible disease and that the journeys these families were on were hard, but I don’t think I truly understood just how many families face this battle every year. Since January we have met so many extraordinary families and children who face the fight of battling tumors or childhood cancer everyday. It is truly heartbreaking to see what these children experience and to see how hard they fight for their health and to just be a kid. However, it is also inspirational to watch how these kids and families take such a horrible situation and continue to fight with the most amazing strength and hope that you could imagine. Unfortunately this disease does not discriminate and can effect anyone. It is also very difficult to know that there is not near enough government funding given each year to do the research that is needed, and therefore many of the treatments available are 20-30 years old. We must continue to raise awareness and fight for a cure in whatever ways we can so that these children and many children in the future will have a cure. If you feel like you can, please take some time this month to help raise awareness for pediatric cancer in any way you are able. Whether it be taking part in any of the activities throughout the state that other organizations are hosting, wearing gold or lighting your house gold, telling others that this pediatric cancer awareness month or simply praying for continued support and healing for all of these kids it would be greatly appreciated. Together we can help to find a cure! Thank you for staying #EmmaStrong!
