Go Gray in May – May 11, 2015

Well here it is May 11th already and I’m just now getting this post written. May is a big month in our house. It brings not only Emma’s 3rd birthday and the end of school, but it is also Brain Tumor Awareness month.

As we get closer to Emma’s 3rd birthday and I think back on her last three years it is overwhelming to think of all she has endured in that time. In the last two and a half years she has had two tumor resections, 5 other surgeries, been on 4 different chemo regimens during that time, had two stays at Madonna, and countless hours of physical therapy, occupational therapy and speech therapy. She fights so hard every day and yet we still have so far to go in finding a treatment that is effective and in gaining the skills she needs to be a normal three year old.  Emma’s story is only one of many kids who fight this battle every day.

Emma got to spend a couple hours meeting her friends for next year.

Emma got to spend a couple hours meeting her friends for next year.

Until Emma was diagnosed I didn’t really realize how many kids and families are effected by this disease. After all we have been through and learned in the last three years, we know how important it is to take time to recognize May as brain tumor awareness month, and how important it is for us to do our part to help raise awareness. Many of the treatments used to treat brain tumors are 30 years old and that there is a very small amount of government money given to advance research in this area. In fact only 4% of the National Cancer Institute’s budget is given to pediatric cancer research and of that only a small portion is used for pediatric brain tumors. Emma is getting ready to start her 5th chemotherapy regimen and we have yet to find one that stops the growth of her tumor. We like many other families are in need of continued advancement in treatment and the development of new drug therapies. We know first hand how important it is to help raise awareness as well as do our part to help raise funds to further research. Nearly 4,000 kids are diagnosed with a brain tumor each year. That is 4,000 new families each year who have to go through what Emma does, and that is entirely too many.

Emma and Alyssa

Emma and Alyssa

While our biggest job is to keep fighting for Emma and helping her to make progress, we also have to do our part to raise awareness and funding. So many of you have been so kind to join us in this fight over the last two and a half years, and we are so incredibly thankful for that. You have helped us raise awareness through wearing t-shirts and wristbands, making donations, taking part in fundraisers like the EmmaStrong Drive for a Cure, and by simply sharing Emma’s story. We can’t thank you all enough for what you have done for us and for helping raise awareness.

May is Brain Tumor Awareness Month and we ask that you take a few minutes this month to join us again and do what you can to help bring awareness to this awful disease so that we can make a difference for these kids who battle everyday. We ask that you please take a moment this month to do something as simple as share Emma’s or another brain tumor warrior’s story with someone, leave a message of hope for a fighter, or wear gray to help spread awareness. Raising awareness is key to helping fight this battle.

Being silly

Being silly

We are also hosting the 2nd annual EmmaStrong Drive for a Cure on May 30th at Eagle Hills Golf Course in Papillion. We had a great time last year and are looking forward to this years tournament as well. We have been working hard on getting sponsors and prizes put together. If you are a free that weekend and looking for something fun to do for a great cause we would love to have you join us. Registrations for teams are starting to come in and we would love to make this years tournament bigger and better than last years. You can register yourself or team at www.emmastrong.com/golf. If you aren’t a golfer and would like to just join us for the dinner, raffle and silent auction you can also sign up and pay for dinner at the same link. So find some friends and get registered to come play some golf and help us raise awareness and funding for pediatric brain tumor research. Last year we raised $11,000 and we would love to be able to make another contribution like this to help make a difference.

Now, for the question many of you have been asking about, “What is next for Emma and how is she doing?” After three long weeks of calling doctors we finally got results from the scans Emma had in April. I would be lying if I said I wasn’t frustrated by this whole process the last few weeks, in fact maybe the last few months, but we finally got some answers and have made a plan to move forward with. It took almost two weeks for Omaha to get the scans to Boston and then the scans didn’t make it to Boston in time for tumor board so we had to wait another week for the next tumor board. Ugh, I hate waiting!!!

Emma and some of her favorites - Popcorn, Hotdog, and the Zoo

Emma and some of her favorites – Popcorn, Hotdog, and the Zoo

Dr. Chi and Dr. Abromowitch were both out of town last week for a conference, but after a few phone calls I talked with one of her residents about tumor board’s recommendations. He shared with us that the board disagreed with Omaha’s interpretation and felt that the tumor has unfortunately grown slightly. They said that it didn’t grow a lot, but it had grown. This means that we need to start a treatment soon. They talked with LA and the trial that we were waiting for still does not have a start date. We were disappointed that it is still isn’t ready to start, which means that we will need to pick a different treatment to start.

The resident said they discussed three different treatment options. They talked about TPCV, Vincristine and actinomycin, and a 5 drug anti-angiogenic regimen. I was a little frustrated because the resident wouldn’t really give one regimen as the top recommendation, but instead said it was up to us. I hate when doctors tell us that it is up to us, because I just want to do the one they think will work best. The TPCV and anti-angiogenic regimens both require oral meds, which are harder for young kids like Emma to do, but the vincristine and actinomycin would all go through her port. After much discussion Brent and I have decided to go with TPCV. It has been talked about the last few times we have changed regimens and was Dr. Chi’s top pick if the trial didn’t work out when we talked with her in February. We have avoided TPCV because there is a chance of secondary leukemia from taking it, but we feel it is the best option at this point. TPCV consists of four different drugs. Three of the drugs are taken orally every 6 hours for the first four days of the cycle, and then Emma would go in for a vincristine push through her port on days 14 and 28 I believe. Then she would have a week or so off and we would start over with the oral drugs. These treatments will be a little harder on her counts and could make her nauseous. We pray that this is the right decision and that the treatment will finally be the one to work. We also pray that it won’t be too hard on her. We go in to meet with Dr. Abromowitch tomorrow to get things set up to start. We will talk more with Dr. Chi to see if we would continue with this treatment as long as it is effective or if we would consider stopping it if the trial opens and starting that. More decisions…but we can worry about those once we get started on the TPCV and figure out how to manage it.

Think I have some attitude??

Think I have some attitude??

Emma has been feeling pretty good and continues to make progress at therapy. She is talking more and more all of the time and has been working so hard on her walking. She is loving the nicer weather and getting to spend more time outside. Brent and I are counting the days until summer break so we can all have some good quality family time together. With yesterday being Mother’s Day, it allowed for time to reflect on how lucky I am to have two such amazing kids call me Mommy. I feel so blessed to have such great kids. Both Aiden and especially Emma have been through so much and I am so thankful for their resilience, strength and love.

EmmaStrong shirts for 2015

EmmaStrong shirts for 2015 – Get yours soon

One other note is that we have finalized the new EmmaStrong shirts and will be getting those online and shipped in the coming weeks.  Please get multiple for your families, we love seeing and hearing about EmmaStrong shirts around the community.

We thank all of you for you continued support and a special thank you to all of you who have checked in on us and been here to listen as we have stumbled through the last few months of trying to figure out a plan. We look forward to seeing all of you at the Drive for a Cure in a few weeks. Remember to get those teams registered! If you absolutely can’t make it to the golf tournament please consider the Cure Search walk or Emma’s Fun Run/Walk being held in Kearney.  Thank you for helping us to raise awareness this month. Go Gray in May and be EmmaStrong!!

Man those two love each other.

Man those two love each other.