CureSearch Walk and Emma’s Birthday Celebration

It has been almost a week since we decided that this post needed to be written, but this entry seemed more daunting to write then any we have done in that past couple months. As a family, this past week has been emotional, exciting, depressing, stressful, and relaxing. I think it would be safe to say that if there is an emotion to feel, we have been through it this week.

The week started with the excitement of planning for Emma’s big birthday celebration as well as being able to see all of Emma’s supporters at the CureSearch walk. We were all really excited about Emma’s birthday because we knew how hard she had worked to even make it to this day, so we had to make sure that everything was perfect. Aiden especially got to enjoy the week leading up to Emma’s party because he got to spend it with his cousins on the farm and got to go to Vacation Bible School at St. Johns. Even though Aiden is quite the helper, this time away did make it a little easier for mom and dad to get things done around the house.

Kathryn and I also both finally made it to summer, so we were both able to go with Emma to chemotherapy together. This was a nice change from sitting up at the hospital all by yourself for the entire day. Week #14 of Chemo went off without a hitch with Emma responding well to the drugs and her numbers were really good as well.

A little disclaimer for my typing quick. If there happens to be any typos from here on Emma just woke up and is sitting on my lap. She is really excited to be by the computer as well.

Friday evening finally arrived and we headed to the hotel to see all the family headed to town. Emma and Aiden really enjoyed getting to sit in the hotel room with almost all of their favorite people. An evening relaxing and talking with family was really nice.

Saturday morning we loaded up to head to the CureSearch walk worried about the weather and hoping the event would go off without a hitch. While walking up to the registration Kathryn and I were amazed at how many people were there and how many different kids and families were going through a situation very similar to ours. We were prepared for to see teams walking in support of these amazing kids, but I don’t think we were prepared for the wonderful presentation and speeches that went along with it. The most difficult part of the day was to watch the extremely strong families go up to the stage and state the name of those family members they had lost to such a horrible disease. Watching family members react to hearing their children’s name called out was really hard. There weren’t many dry eyes in the area when they released the gold balloons into the air in remembrance of those lost.

One of the highlights of the morning was getting to see all of the kids fighting cancer get to receive a medal up on stage. Some of the kids up there have been fighting the disease for over ten years and to see them able to do this provided us with a lot of hope for Emma’s future. I also want to give a special thanks to Kellie Beresh for not only helping put this amazing thing together but also having the strength to share your message to all of us. It is crazy how similar everyone going through this feels. The walk ended up raising over $190,000 this year which will go a long ways in helping find a cure for some of these horrible diseases.

The birthday party was of course a success with the never ending supply of food provided by Kathryn, Maggie and Cindy. Lets just say if anyone left hungry it was their own fault. Emma loved getting to dig into another cake and her birthday cake, made and decorated by Kathryn, looked amazing. We loved getting to spend the entire day with our families and friends. Thank you to everyone who took time out of their busy schedules to stop and see us Saturday. It was a very special day for our entire family.

Now onto the not quite as positive news. We got a phone call from Dr. Goumnerova on Friday last week and she informed us the tumor board in Boston was not real happy with how much the tumor had grown in the first three months after surgery. They aren’t sure if it is because chemo didn’t get started right away due to the complications with the shunt and port or if it is because the chemo isn’t working as well as it should be. Because of this she felt that we shouldn’t wait the entire three months till our next MRI. We just found out today that we will be headed to Boston in the middle of July to get an MRI done and meet with the doctors out there. The doctors in Omaha are reading the same MRI as the doctors in Boston and they both see the same growth, it’s just that the doctors here think that the extra growth came from before we started chemo and that the chemo seems to be working fine. Hopefully we will find out a more definitive answer to this when we head out to Boston. Other then getting to meet with Dr. Goumnerova we will also have the chance to meet with the entire medical team and go over the MRI results the same day as the MRI. This will be great when compared to waiting two or more weeks to get results in Omaha. That time is extremely hard on mom and dad’s heart.

This past Tuesday, Chemo week 15, Emma also had complications with the chemo like she did in week eight. About an hour into the chemo she began to break out in hives as an allergic reaction to the chemo. This breakout occurred even though she was given a dose of Benadryl and a steroid before the chemo process. The bad news is that this is not expected to go away and will probably get worse in the future. The options are that they increase the amount of steroid, which we don’t want to do, or administer the chemo even slower. So we may be looking at increasing the amount of time chemo takes an hour or two. Dr. A. is hoping that will help her tolerate the chemo enough to continue with this drug, but only time will tell. There is a chance that if she continues to have reactions to the drug we may have to switch treatment plans, which none of us want to have to start this process again. We could use a few extra prayers this week that Emma tolerates the chemo better and has no reactions.

Thanks again to everyone who came and walked on Emma’s team Saturday and to everyone who helped us celebrate Emma’s birthday. It was a wonderful weekend!!!