The old adage of “no news is good news” is most definitely true in Emma’s situation right now. Earlier we told you all that Emma and Aiden would be starting school soon and we would be adapting to a new schedule and procedures. Those changes have really impacted how much time we have to spend with the kids so in turn has limited the opportunities to let everyone know what is going on. The best news that I have to share with you is that I don’t have very much medical news to share with you.
Medically, Emma is just short of having gone through two more segments of her chemo treatments. These have gone extremely well with very few bumps in the road along the way. We had to adapt some of the nausea medicines as well as adding a medicine that helps her with acid reflux, but both changes have seemed to be much better. Emma has one more infusion of vincristine to complete this round, which is her fourth round overall. This means that she is halfway done with this current treatment, something that we haven’t made it to in quite some time. One of the major side effects of this regimen was supposed to be Emma’s blood counts dropping but ever since her Make-A-Wish trip Emma’s counts have been really good. On Thursday her ANC count was actually 2,000, which she hasn’t been at forever.
Another development medically was that she had Botox injected into her thumb and wrist on her left hand as well as her left ankle in order to help relax the muscles an increase her ability to use both. Since these shots she has dramatically increased her effectiveness in walking. This came from a better grip from her left hand and increase flexibility in her left ankle. The only issue is that she will need to continue getting these shots when they wear off which could be every two or three months. Good thing she is good at accepting needles.
After going to see Emma’s eye doctor we also found out that she is continuing to struggle with her right eye wandering so we have had to begin patching the left eye for two hours a day. It is a work in progress yet, but we need to make it work as the other option is to put drops in her left eye that would make the left eye fuzzy for two or three days at a time. Something that she wouldn’t like at all, because she isn’t even a fan of two hours with a patch.
Something that I am extremely happy to announce is that Emma is currently six days from making it a calendar year without a single hospital stay. Emma was discharged from Madonna Rehab on the 17th of November last year and she hasn’t had a night in the hospital since then. We have had a couple ER visits in the middle of the night but that doesn’t count in our world. I am so proud of her determination to beat this disease and take on anything that comes her way. God is good!!
Other developments for Emma include her starting attending daycare with Chandra Bombeck and Shannon Miglini as well as going to Preschool at Walnut Creek Elementary. She has loved getting the opportunity to meet and play with peers each and every day as well as being spoiled by new adults in her life. One of the cuter developments is the fact that she calls her Preschool teacher, who is Mrs. Erica, Merica (We have her loving America at a very young age). She absolutely adores those that take care of her on a daily basis including her paraprofessional Ms. Deb. Those of you that see her daily probably wouldn’t believe how often she talks about all of you; we couldn’t do this without each and every single one of you. We are so blessed to have such amazing people taking care of her each day!
The month of September was a busy, challenging, amazing and humbling month spent attending Childhood Cancer Awareness events throughout the month. The amount of work that went into all the events we attended was inspiring and we only hope to do even more next year. Some of the events we made it to were the Team Jack – Brain Tumor Awareness game at UNL, Sammy’s Superheroes – Glow Gold Event, and the lighting gold of the Woodmen Tower. When you mix in normal work activities, therapy, doctors appointments and other life events it makes for a very busy month.
Just so everyone is up to date, we will be heading back to Boston for scans again the first week of November and would appreciate all the prayers we can get for safe travels and stable scans just like last time.