enter THIS WAS POSTED AGAIN, AS NOT ALL NOTIFICATIONS WERE SENT.
#EmmaStrong Brain Tumor Awareness Shirt (Get Yours Today)
As I sit here today typing, I wonder to myself. What is it exactly that God has planned for this family of mine? What good can possibly come from giving an innocent child this difficult of a burden to bear? I refuse to believe that there will be anything but a positive outcome from this brain tumor business. I am willing to do anything and I repeat anything to somehow turn these events into a positive for my family. I refuse to give in to the expectation that medicine that is 25 years old is the best we have available. I mean seriously, what kind of technology was even used 25 years ago when these medicines and regimens were developed. There are way too many tools and brilliant people out there in the world for this to be the best for my Emma and all of her friends. Because of this and countless other reasons Brain Tumor Awareness Month is my focus for the next
A year and a half ago the only child I had even heard of that was suffering from a brain tumor was a Team Jack up in northern Nebraska. Now I sit here with very few hours in my day where my mind isn’t on kids like Emma, Jack, Seth, Sage, Kallie, Tyson, Cole, Maddie, and Spencer. There are so many others that aren’t mentioned here, as these are only some of the kids that we have personally gotten to know the families of.
The first development that I need to let everyone know about is that Emma’s new Go Gray shirt has been officially been made available for purchase. The shirts are still being printed but we will begin organizing orders today if you are willing enough to support our cause. I have the bags and address labels ready to go and will begin shipping these items out to your homes around the 8th of May. We have changed the T-Shirt tab of EmmaStrong.com a little but the ordering process is very similar to before. We can’t wait to get these shirts out to you, as we are extremely happy with the way they turned out. Get your order in now so I can get these to you as quickly as possible. If you can get pictures of yourselves out and about this month wearing your new EmmaStrong T-shirts. Tag them on Twitter #EmmaStrong or share them with me on Facebook and I will put them up in my classroom. My students love to see how far this message of being EmmaStrong spreads, and to be honest we love seeing it as well.
Secondly, I want everyone out there to find themselves three other golfers and put together a team for the first annual EmmaStrong “Drive For a Cure.” Registrations continue to come in but the Gehring’s want to fill Tiburon Golf Course on May 24th, 2014. Even if you only know three of your four golfers, get your registration in today. I have to submit a list to the golf course early so don’t be left out not being able to get registered. We want to see you there. I know everybody is waiting to see if they have anything going on or how the weather will be, but just trust your gut and get your team registered today. In order for our organization to get the things done that we want to do, we are going to need your support.
Finally, after reading my rant for the past few minutes you are getting to the information that you are looking for. How is Emma? Well to be quite honest with you Emma has been a little difficult the past couple days. She is finally deciding that she thinks she is a two year old and she should have an opinion about what we are doing, quite often I might add. I’m not quite sure what Haley is doing right, but every time we come home Haley reports Emma had a great day. She apparently saves up her attitude for when Mom and Dad get home at night. We are pretty sure this attitude is coming from the two-year molars to be honest with you, but our innocent happy Emma sure has more of an opinion lately.
Emma is doing well. We had the privilege of spending two different nights in the ER over Easter weekend due to a temperature when we got back from Boston. The first night proved to be quite an adventure as they used Tegaderm film over her port even though we told them she was allergic to it. They must have missed the red band that was wrapped around her ankle. Knowing we were going to have to come back the next night they offered to let Emma stay accessed, which would save her a poke. Using the incorrect film eliminated this as an option, which made both Mom and Dad quite perturbed. This wasn’t the end of the evening either, as we were leaving the ER the nurse came running out saying that she forgot to heparinize the port which meant Emma had to be poked again before we left. You will all be proud that no one yelled at or even said much to the nurse for making an error that also made Emma quite angry. This doesn’t mean that we weren’t angry but it probably didn’t help that it was 4:00 in the morning when we got done at the ER.
The second night proved to be much less eventful other then the fact that when we got there on Saturday at 10 p.m. the waiting room was completely full. The staff did a wonderful job getting us in and out as quickly as possible, with them going so far out of their way to give us the Trauma room because all the other rooms were full. Aiden still talks about getting to sleep under the warm blanket for the last hour or so we were there. I will be sharing a picture of this on a later post.
Emma continues to make strides in therapy and is especially making gains in her receptive language and in the area of crawling (she actually wants to do it, every once in a while). We also made the decision to go with the Mtor inhibitor that recently completed its trial period in Boston. Dr. Abromowitch said that this new drug is “exciting” and that people are expecting positive results from this new treatment. We are excited about the fact that we won’t have to sit in infusion for as many hours and also won’t have to give Emma quite as many different oral medicines as one of the other options. Something we will really have to watch for with this treatment is that some of the kids going through the treatments suffer from mouth sores. We hope this won’t be Emma but will cross that bridge when we get there. The medicine will be shipped to us and we will daily have to dissolve the pill and then suck it up in a syringe and give it to Emma, we will then have to add more water into the bowl and then give her that as well to make sure that she got all the medicine she needs. The shocking thing about this drug regimen would is $240 cheaper a month if we order it through the mail then if we get if from Walgreens. I really don’t understand how some of these things work but I guess you do what you have to do.
Emma was unable to take part in the MEK inhibitor trial because she would be unable to swallow the 1 cm long pill every single day. The good thing about that is it made the decision making a little easier. We can still hopefully use that treatment some time down the line if it does as well as people expect in the trial phase.
Thank you so much for taking the time to read this and to follow the story about our strong, smart and beautiful daughter. Everyone’s dedication to Emma’s story continues to amaze us each and every day. God bless each and every one of you as we get closer and closer to “Summer.” Can’t wait.
If you have any questions about the new t-shirt or want to communicate with me about an order email me at IamEmmaStrong@gmail.com