Friday night at the Circus!

Friday night we went to the Circus and they had a Carnival there. Aunt Cece and Uncle Bill and Aunt Pam where there and Cousins Mykaila and Makena and Tim and Sara and then Bonnie and Vaughn come up from Dayton and of course Andy and I were there.

How many people do you know that can spend 5 days getting Chemo and be ready to party come Friday night? Eden rode every ride there including the Round up where you stand up and it spins you silly.. SHE LOVED IT! As you can see she ate everything in sight and is feeling GREAT! She Loves to play with her Cousin Mykaila. Riley also managed to ride all of the rides even with his cast and they both really enjoyed the Circus.

Sat Stef came up to spend the weekend and Eden and Riley were so excited to get to see her big Belly as she is now almost 7 months Pregnant. They also got to feel the baby moving around which was so cool. Eden is so excited for the baby to be here. She says that when we aren't around she gets to babysit him. lol Stef has asked Eden to be his "god sister" it is all so cute!

Sunday we went over to Cece's to have bunch with Papa Jim and spend some time with him and we worked on the pool for awhile trying to get it ready to open next month and then had Dinner at Uncle Bills and headed up to get Easter Pictures before Eden loses her hair. We were doing this exact same thing this time last year as she was on the same Chemo. The Pictures turned out great and as soon as we get them back i will have them up on the website.

Dad met up with us right after pictures and Riley and Eden headed off with him for the week. Eden will be back in school all week with the exception of Thursday when she has to run in to clinic for labs. Her hair will start to fall out sometime this week and she told me she cant wait because hair is just to hot in the summer...lol

Thanks for checking in on girly girl!

Thursday Chemo

Mama Hope took Eden for Chemo today. We worked on spelling words and first grade homework while we waited. We also played "Wig Out", a card game. Of course, Eden won!

Updated by: Mama Hope

Over the hump

Three days down and two to go. Eden is still feeling great with no side effects of the chemo so far! The only problem she has that they have so much fluids running through her little body that she has to pee every few minutes which we have turned into our own little joke and laugh about.... She and Riley are outside right now enjoying the warm weather and we are hoping it holds up though the weekend so she can ride her bike. She asked to ride today but i could not say no fast enough considering she has her port accessed and tubes running from it to her saline pack that is strapped to her back... Can only begin to imagine the can of worms that would open... lol And of course poor Riley is still in his cast. We were hoping they would cut it down below his knee or even give him a walking cast today but no such luck. He is stuck in this big cast for at least 2 more weeks at which time he will go back for more X-Rays. We had to run to Staples last night for something Riley needed for School and walking in I just had to laugh looking at us.. Riley and Eden asked why i was laughing and i told them all together we were one big walking handicap. Riley and his cast and crutches and Eden and her hearing aids and big bag of fluids hanging from her back and tubes running everywhere.. sometimes its either laugh or cry and laughing is always my preferred choice.

The Longest Day

Monday was the worst day of this week. We showed up at 9am and they started running fluids on Eden. They have to see her urine diluted to a % before starting the Chemo and it took 6 hours to get there. Once we get to that point it only takes about 1 hour and 15 minutes for her Chemo to run. The rest of the week will be better because we will run fluids all evening and night at home from this point forward. We took tons of things to try and keep her busy and we always have the TV to fall back on but she still gets a little bored. Unfortunately she is stuck in one of the isolation rooms because of the VRE she had last year. As you can see by the pictures i took yesterday she took a little cat nap and then played most of the day at the little table we set up while Mommy tried to work. I believe she came close to eating her weight yesterday.. Thought it would be fun to try and list what she ate yesterday. Cereal, English Muffin, Grapes, Kudos's M&M bar, 3 bags of hulless cheese popcorn, chicken tenders, onion rings, three musketeer bar, princess pop tart, baby bottle pop, chicken strips, mashed potato's and gravy, corn, role...... I could not have been happier to see her eat all of this and i hope it continues. She seems to be feeling fine and we talked yesterday about her losing her hair and she is OK with it... We don't feel there is any need to go deep into any detail with her about the Cancer getting worse as a life of Chemo is all she knows and doesn't really pay attention to one V's another. i am sure on some level she understands that the change wasn't good but she knows we are always there to talk to her whenever she wants and we never hide anything from her. I kinda tried to make this a fun week for her by having a different person take her to clinic each day so she wouldn't get bored with old Mom. So today she will be there with CeCe (which i am sure will make this one of her fav days) and tomorrow it will be Eden, Me, Riley and Andy. Eden and Andy will go over to clinic while Riley and I go across the street for his appointment with the Ortho about his leg. Thursday will be Mama Hope and Friday will be Bonnie (Andy's mom) This is also a huge help to Rourke and I as we try very hard to continue our work schedules for as long as possible.

I would like to mention a wonderful Women named Debbie who we met around about way through the website. Deb has been working tirelessly to put together a raffle for Eden. She has been hitting up everyone she knows and doesn't know for items to raffle off. I feel awful that i have been very little help to her as right now my plate is so very full but if you have any ideas or would like to give her a hand please feel free to email me and i will get you in touch with her.

Thanks for checking in on our girl!

The Plan

Rourke and I had a call with Dr. Mosse today for about 45 min and a plan is in place. First off she does agree that the Disease has progressed but maybe not as bad as we thought... But either way it tells us that the meds she is on now are not working. Eden will start back on the Topo/Cyclo on Monday in the Clinic as outpatient and she will do two rounds of this chemo. Some of you may remember this from past March. Its the same drugs. They worked very well for her then improving her Disease by more then 70% and it wasn't extremely harsh on her. She will lose her hair....no doubt this time..lol But i think she will be completely fine with it.

After the two rounds of chemo we will do scans and if we see things looking better then she will go to Philly for MiBG Therapy once again. We did this back in August of last year and had amazing results from it. If all goes as planned we will be heading there around the last week of April or first week of May.

Lack of Detail

We realize you all may have gotten the idea of how our day went yesterday based on the pictures posted and I am sorry there was little communication to go with it but we just really needed a minute. This came as a very big surprise to all of us including Dr. Yeager. Eden has been feeling great and had no pain which is unusual considering the progression we are seeing now. Obviously things are not good based on what we are seeing. (at least 10 to 15 new spots) We spoke in depth with Dr. Yeager right after the scan and he will be working with Dr. Mosse and Dr. Maris today to come up with a plan. We of course have told them what we would like to do and so now we will get their professional input and put things together. Neuroblastoma won this battle but we are still ahead on the war! Eden has an amazing group of Doctors on her side and we are no where near ready to give up!

We have received so many wonderful emails from Eden fans sending love and good thoughts and they mean so very much to us! I always try to prepare myself for the worst at scan time so that i am not completely devastated if its bad but i don't really think it works....lol i truly believe these are emotions a parent is not equipped to deal with.

I will update when we have a plan.

Thanks

MIBG Scans

Here are pictures from today's and previous scans... The photo from 12/21/2005 is normal and what the results should be. As for today's scan, well you can fill in the blank. Were talking with Eden's Oncologists to figure out a plans.
























Today!



Eden's Trip to CHOP in January of 2007





















Relaspe from about a year ago........




Normal...... NED... No Evidence of Disease

The Amazing Tumbling Riley

We got to spend another fun filled evening at Columbus Children's hospital yesterday only not for Eden this time. Shortly before the end of the school day, Riley decided to take a tumble down the steps of the school and fractured his ankle. As you can see from the picture i took this morning the cast goes from his toes to his tush. He is very wobbly on the crutches but i am sure he will learn to master them over the next eight weeks!

Eden is doing fine and feeling good. She will have clinic today and her MiBG injections and tomorrow she will have her scan. Extra prayers please!

We will let you know the results as soon as we have them.

A day in the Life

Sorry we haven't updated lately. No news is good news! Eden has been fine. She is very tired every night and seems to be taking naps here and there but considering she IS on a chemo regimen i think she is doing great. She had labs on Monday and all of her counts are fine and she was up a pound and grew almost an inch over the last month. After Clinic she went to spend a few hours with CeCe and of course they HAD to go shopping for Eden's Easter Dress and Eden insisted on trying all of her favorites on. She loves her CeCe sooo much and i don't know what i would ever do without her emotional support!

Last night Eden was invited to help out at a Hats For Hero's event put on by the Columbus Blue Jackets Foundation at Mongolian BBQ. It was a huge success and Eden and Riley had a wonderful time. Rourke took tons of pictures and will get them up here soon.

I had a few people tell me they couldn't use the link i sent for Edens shop so here it is again.

http://www.cafepress.com/edensshop

We have already bought many items from the sight and will start to put pictures up soon. If you decide to purchase Eden gear we would love your pictures as well.

Thanks

Eden and Dad Hair Update Back to Normal!