Eden Adams

Eden has had a very rough week. She left for Florida on Thursday the 8th and was in the hospital there by Friday morning. We flew her back on Sunday as she was not improving. She has been running fevers and pain in her belly and throwing up non stop. This week has been filled with drugs and scans trying to determine the problem. Thursday night she started feeling dizzy and hallucinating and we thought it was from the drugs so we slowed them overnight. Friday Dr. Yeager appreciated an off rhythm in her heart and an EKG and Echo were done. The best way to describe the problem is her heart is no longer strong enough to pump out the blood as it should. It is working at less then 50%. Once we learned this, things went down-hill very fast. She failed her neuro exam and was rushed down for a CT of her head looking for bleeds in her brain and then from there to PICU (pediatric intensive care unit). The CT was fine but she has a serious fungal infection in her lungs which is causing all of her problems at the moment including her heart problem.

Fungal infections are the end all be all hardest infection to get rid of and it could take up to 3 weeks to know if the Antibiotic is working and if its not we could find out any time as she would continue to get worse even as bad as causing her heart to stop. We were asked by the Dr. in ICU what measures we wanted taken if her heart stopped or she stopped breathing and we made it clear we wanted all measures at this point to be taken. The odds are on her side that she will recover from this but it is literally an hour by hour situation for now. We cant even think right now what this means for the future in terms of controlling the Neuroblastoma but in a few weeks we should know where we stand and go from there. Will she be able to do chemo again, who knows..... it really depends of how much her heart heals itself.

We have to watch her fluid intake very close as to much could continue to cause problems with her heart. The antibiotic for this infection is big time and is very hard on her kidneys and liver which will have to be watched closely. She is also not eating so they are putting her on TPN which is also hard on her liver. She has a fight ahead of her and needs everyones support and prayers! We think Eden still has a great quality of life and we are no where near ready to give up on her!......

Last night they started her on a drug to remove some of the fluids out of her body to relieve the pressure on her heart however we were told it could actually make her heart worse but had to be done. She came through the first race with flying colors. Her heart has actually slowed down some overnight which is what we want to see..... One hurdle at a time she will fight and win!

All our love.

Hi Everyone,

The last few weeks Eden’s spirits have improved much. She is feeling so much better and it is soooo nice to see her back to herself. We celebrated her 8th birthday on Monday and she celebrated it all week long. Lol. I feel so blessed to still have her here with us with each milestone we pass. Eden was diagnosed just after turning 4 and in July our fight will be 4 years old. She has given so many people so much in her short 8 years and we pray for many more.

We learned today of a fight that ended. Austin Melgar took his last breath last night at 10 pm. They live in MI but we had the good fortune to meet his family in VT. Please pray for his family in this difficult time.

Eden’s ANC has finally started to rise so we are assuming she will be able to start Chemo on Monday. She is now two weeks behind on the Study schedule and if her counts had not improved this week she would have been kicked off the study. She still requires platelets 2 to 3 times a week and blood once a week. It is so hard to see her improving and know that we are going to hit her body again right away but we have no choice. It is my hope that we will see enough improvement at the end of this study to hold the chemo for a bit and allow her body to recover some. She must do 4 total rounds of chemo before the study is over. She had done one and will do the 2nd next week and then must do one more here in Columbus and then one in VT.

Please keep Eden and the Melgar family in your prayers the next few weeks.

All our love

Eden started Chemo today and so far so good!! She is eating well and playing with the other children here at the RMH. We have 4 other Neuroblastoma families here with us doing the same study. Austin from MI who we have not been able to meet because he has been in the hospital due to complications but he has 4 siblings living here. Dustin and his mom from Atlanta are planning on leaving tomorrow and Jack from London is here with his brother and sister and parents, they will be here for the next 3 months.

Carly and Molly from NH came to town to spend the weekend with us and we had so much fun. We just love them and they are so very wonderful to Eden. They planned a wonderful pink party for Eden sat night because they wouldn't be able to see her on her birthday in April. We are hoping they will be able to come visit us in Columbus this summer.

On our last visit we met a wonderful woman named Carol, I believe she is on the board for the RMH. She told me to give her a call when we came back to town and she would help us find some fun things to do, anyway I ran into her here early last week and she set us up to visit Burton Snowboards on Sat and she went with us. It was a very cool place and they gave the kids tee-shirts and some other goodies.. Very wonderful people!! Later that evening they showed up at the RMH with an entire bag full of Snow gear for Eden.... We were blown away. She was tricked out from head to tow as you can see in the pictures of her in purple. Sunday Carol took us to Bolton Valley Ski resort and they gave us all free lift tickets and rentals... Larry took Eden on a wonderful ride in the big yellow show "thing" and she had a blast. Riley did such a great job on the snowboard. He and Andy are paying the price today as neither of them can move......lol There is know way to explain how wonderful everyone has been to us and I can't thank Carol enough for her kindness!

We will be back in clinic tomorrow for chemo again tomorrow and all this week. Tomorrow she will get to throw a pie at Dr. Sholler and she can't wait.

Riley and Andy are going Snowboarding again on Thursday if they recover by then. However i think Andy will probably end up on ski's so he can spend a little more time off his butt. hehe..... Eden has plans to go get Ben and Jerry's Ice Cream on Wed with one of the girls from Burton's

Thanks everyone and I hope you like the pictures.....