This update is long over due. Somehow between swim lessons, doctor’s appointments, therapy, cleaning projects, and just enjoying summer with our little ones I have put off sitting down to write this for a few weeks now.
I feel like I have been putting off writing the update because I don’t even know where to start. We are just so incredibly moved and thankful for all of the support we have received from so many people over the last month during our "Go Gray In May" t-shirt drive and the first annual EmmaStrong "Drive for a Cure" Golf Tournament. We didn’t actually fill the t-shirt orders the first time we did t-shirts some friends of ours did. Filling these t-shirt orders ourselves, we have been so overwhelmed and moved by the all of the people who have ordered shirts. It is another reminder that it is not just our close friends and family that follow Emma’s journey, but so many people who we don’t even know that continue to follow her and pray for her. We are so incredibly thankful for the continued prayers and support. We have been very happy with the t-shirt sales and are so thankful that so many people are joining us in the fight to help raise awareness for pediatric brain tumors. If you are still wanting a "Go Grey" shirt all orders have been shipped as of Monday afternoon so we are looking for more orders to fill. Those missing original shirts, we should have every size in all three colors very soon, look for those to be coming in the mail within the next week or two.
We are also incredibly thankful to everyone who came out to the "Drive For a Cure" golf tournament to help support our cause and celebrate Emma’s 2nd birthday.
We had 92 golfers at the tournament and with the help of those who participated and several sponsors we were able to raise over $10, 000 that will go directly to research and development of new treatments for pediatric brain tumors. We would like thank all of the businesses that were hole sponsors and pin prize sponsors, as well as a special thank you to Markel Automotive and Union Bank Columbus and Omaha for serving as gray level sponsors and Drey Inc. and McHugh Iron Metal for serving as gold level sponsors. We were so incredibly overwhelmed and thankful for the support we were given as we prepared for and at the golf tournament. Thank you to everyone who donated and took part in the even, it means more to us than you know. It is our hope that by organizing events like this we can do our part to help find a cure for this horrible disease so Emma and the many other kids like her can beat this.
Pictures will be posted on the website soon. Be on the lookout for that.
The golf tournament was on Emma’s 2nd birthday, so we were happy to celebrate our little girl’s special day with so many people who continue to support her. I can’t believe she is two already. Where does the time go?? As I think back about her first two years of life we of course still wonder why Emma, how can this be happening to our sweet little baby; however, we are also so incredibly thankful for her and all she continues to teach us each day. She has come so far from that baby that had surgery a year and a half ago in Boston. Emma continues to inspire us and amaze us with her strength and happy personality even when she doesn’t feel the best. Emma has come so far and grown so much in the last year. She isn’t a little baby anymore, but is really starting to act like a two year old. She definitely has her own opinions and some two year old sass. In the last year she has learned scoot, to walk with her walker, drink from a cup, to talk and so much more. What a strong little girl we have!
Now for what you are all really wanting to know, how is Emma? Emma is doing better with the new chemo. It has been quite a process, but we are doing better with it. After switching several of her anti-nausea meds and adding some other meds like acid blockers, laxatives, meds to help her rest better. It has been quite the process of trying different things and adapting, but we may have somewhat figured it out. We now have nausea meds that don’t make her throw up (which is helpful). Emma continues to take her oral chemo meds every morning and then takes several other different meds through out the day to help improve some of the side effects. She is getting better at taking the big amount of chemo medicines every day, but we still have some battles. Emma still doesn’t feel the best in the mornings, but by mid afternoon usually starts to perk up again and is more interested in eating, drinking and playing. Emma has lost 2-3 pounds since starting this chemo regimen so that doctors are watching her weight. She is starting to eat and drink better than she was, but it is still far from where we were before starting this chemotherapy.
Emma has been working hard at therapy, but it has been more difficult because she doesn’t feel very good. I hate having to push her hard when she feels rotten, but I guess it is something we have to do if we want her to continue to progress. Emma is scheduled for surgery here in Omaha next Thursday. She will be having Botox done on both of her eyes. She will have it injected on the outside muscle of each eye causing both eyes to move inward. Then as the Botox wears off the both eyes will move back towards midline and the hope is that as the eyes move outward they will both learn to move together again. This will hopefully help Emma’s left eye to no longer drift out like it does now and will help improve the her vision so that she doesn’t develop double vision from eyes not moving together. She will also be having her toenail on her left big toe removed because she has had a pesky ingrown toenail that just won’t get better and is causing her quite a bit of pain when walking. We aren’t really looking forward to the surgeries, but know it is something that has to be done to help her continue to grow and develop. We are a little nervous though, because when we went in for a blood draw last week her port wouldn’t return blood, which means it isn’t working correctly. After trying some meds to unplug the port and having x-rays done (which showed it is still placed correctly) the doctors aren’t real sure why it isn’t working. So they sent us home and said they will try to access it again next week and hope that it is working better, if not we may need to have the port revised. The port operating correctly is extremely important as it took a lot of digging and three different pokes in order for Emma to have an IV put in her arm. We are praying that the port is magically working better next week, so that it can be used for blood draws and to run meds through during surgery, otherwise she will have to get another IV. So fingers crossed that it works better next week.
We are both enjoying being home with the kids this summer. It is nice not having to juggle work schedules and appointments. We enjoyed doing swim lessons with both kids the last two weeks and have enjoyed some other fun outings to the zoo, parks, and just playing outside at home. We are looking forward to the Cure Search walk tomorrow morning at Village Point in Omaha. It is a wonderful morning to remember and honor children and their families who are battling childhood cancer. If you are interested in walking with us, you can still register online at www.CureSearchWalk.org/Omaha. Registration starts at 8:00 tomorrow morning, the program starts at 8:40 and the short walk will follow the program. If you are interested in walking with us we would love to see you there. The ceremony honoring those children that we have lost as well as the current survivors is extremely moving and something that everyone can learn from.
We also have the Emma’s Fun 5K run/walk coming up in Kearney next weekend, June 21st at Yanney Park in Kearney. Registration starts at 9:00 and the 80’s themed run/walk begins at 10:00. We are so looking forward to seeing many of our friends from the Kearney area next weekend at the event. If you are able to attend you can go to www.getmeregistered.com or you can register the day of the event at Yanney Park. Our friends who are organizing this have put a lot of work into this, so we hope to see lots of you there next weekend. Those of you in the area, please consider taking part in this event.
Thanks again to everyone for all you do to support us. #EmmaStrong!!!