Scan Day – January 15, 2019

Here we are again, getting ready for scan day tomorrow. These three months always seem to fly by and now it seems we are filled with all of the same scanxiety we were filled with for all of the previous MRIs. No matter how many times we do this, it never seems to get easier.

As I write this post tonight in our hotel in Boston, I am reminded that six years ago on this day we sat in Boston while Emma had her first tumor resection. It seems as if that day was so long ago, but yet the memories of it are so clear. It is hard to believe that just a few weeks ago marked 6 years since Emma’s diagnosis, and today marks 6 days since the journey for treatment and recovery began. This little girl (and I suppose us too) have come a long way in six years. Emma has endured and experienced more than any child should have to, but she fights this fight head on everyday, and we are so thankful for her strength and love. While we are filled with anxious nerves about tomorrow’s scans, it is nothing compared to the fear and anxiety that we were experiencing six years ago at this time, and we are thankful that today is better than that day. It was a hard, yet humbling reminder today to look at all of the memories on Facebook from this day six years ago. While it was one of the hardest days of our lives, we were also reminded of the outpouring of love, support and prayers that lifted us up on that extremely hard day. The army of prayer warriors, friends and supporters of Emma is something we are so truly thankful for.

I don’t seem to be very good at getting updates written these days, so I suppose many of you are wondering how Emma is doing. We had such a wonderful Christmas together as a family and feel so blessed to have had that time together. Emma continues to love school and being around her friends. As I think I have written in previous posts, this treatment that Emma is on continues to be hard on Emma. We started her second round of four for this chemo regimen on November 30th. Emma continues to really struggle with nausea on the days following having Actinomyocin-D. She has this med every third week. The doctors have continued to make adjustments to nausea meds and we seem to be getting a little better system in place to manage the sickness those weekends. This round the chemo has really effected Emma’s counts. She has needed two platelet and two blood transfusions and also missed a week of school because her ANC was low while there were cases of influenza at school. The chemo also seems to be causing her fatigue and in turn we have seen some decline in her strength and motor skills. She also seems to be having some increased neuropathy as a result of the Vincristine. Last week we noticed that Emma’s stomach was distended, so we had an ultrasound done and it showed increased fluid in her abdomen. The doctors held chemo Friday because of this and are still trying to figure out what may be causing this. At times the weeks are long and hard for Emma, but she continues to fight on with a smile on her face. As parents it hard to watch what the treatment that is supposed to be helping her, make her sick and weak. Some days you look at her and wonder how just a few months ago, she could look so much healthier and better. It is hard to know that it was our choice to choose this treatment and that decision has caused all of these side effects for her.

We pray that Emma’s scans tomorrow show that this treatment has kept her tumor stable and is working. We also are hoping to have some good discussions with Emma’s doctors about how she is tolerating the chemo and if there is anything else we can do to help her through it. If you have a few extra minutes tomorrow, we would appreciate some extra prayers for good scan results and calm hearts while we wait. Thank you to everyone for all of your continued love, prayers and support! We will update the website again tomorrow with results. Thank you for being EmmaStrong with us!