It seems everywhere we turn there are families and kids that have a busy week of scans, tests and procedures right now. EmmaStrong wishes the best of luck to all those battling. As we sit here thinking about all that Emma has been through in the past month Kathryn and I are amazed that tomorrow it will officially be one month since Emma was discharged from Madonna, the second time.
Now that our family has begun to forget the constant tracking of fluids and food, uncomfortable sleeping arrangements, and basically not seeing each other, we are able to see the drastic changes that we were hoping for. The hard work and dedication that Emma’s favorite therapists, Sara and Kelly, made her strong enough to be scooting and playing independently just two months after her second craniotomy. To think about the fact that she hasn’t been able to do this since the beginning of July is absolutely heartbreaking. This disease has very subtle ways of reminding us that it is extremely powerful. (Sarcasm)
Emma has made great progress with her OT and PT the past couple weeks. She has walked up to 200 feet with the assistance of her walker multiple times and continues to show progress in wanting to keep going. Some days she can get a little emotional (again sarcasm) when they ask her to get up on her hands and knees. She would much rather butt scoot and walk using her walker then do anything that involves crawling. The only thing that we know is that her ability to be mobile and play independently will never be taken for granted again.
Emma has tolerated the new chemotherapy regimen very well and I know that her family has really enjoyed the fact that we haven’t had to spend countless hours watching fluids flowing into Emma. The fact that the only extra time we have to spend at the doctors is the waiting for blood results and the medicine to be ready is really handy. The two side effects that we have found for this regimen have been the medicines that Emma has had to take three times a day for leg pain, tone and shakiness (two of these taste terrible) and the fact that we are really seeing an increase in the amount of hair Emma has had fall out. If this means that the chemotherapy is working, trust me we will take the issues.
The purpose of this update is to make sure that all of our prayer warriors out there know the plan and timing of everything this week. We are headed back to Boston for our 3 month scans on Tuesday and Emma will actually have her MRI at 10:00 a.m. ET on Wednesday. If everyone could take the time to say a prayer for positive results and a routine process we would really appreciate it.
It is hard to believe that it has been three months since Emma’s surgery and that it is again time to have scans done. The days that lead up to these scans are filled with anxiety or as many of our friends say “scanxiety.” We are praying for stable results, but only time will tell. We thank you for all of your continued prayers and support and will update you from Boston with the results. If anyone has any cool t-shirt ideas or a color request message me on Facebook or comment in the guestbook. Time to start planning a new shirt. EmmaStrong!!!