So Far So Good

Eden has been on her new Meds for 2 full days now and so far no real side effects. That doesn't mean we wont see any but everyday without them is a good day! There are of course 3 pages of side effects with each drug but we cannot allow ourselves to worry about each and every one so we focus on the ones most likely to happen which would be vomiting and Severe Diarrhea and of course her blood counts. If the vomiting occurs we have Zofran and she is already on continuous antibiotics to control Diarrhea but we always have the option of adding imodiem and for her blood counts we can thank all the wonderful blood donors that allow her to receive as many transfusions as she needs. I have added a picture of her from last week playing in the Bath tub full to the ceiling with bubbles. She was having a blast!

Water Babies

Friday after school and work we headed off to Fort Rapids indoor waterpark and hotel here in Columbus for a fun filled weekend. Riley, Eden and Justin had the Best time ever there! This place has a huge room filled with different water activities. Pools and jungle Gyms and a lazy river and 6 water slides. Once we walked in the water area we didn't see the kids for 3 hours. Eden had a blast going down the waterslides that we saw many adults to afraid to go on. She is such a dare devil. On Friday night we had Cece and Andy and Bonnie and Vaughn there with us to play and on Sat Bonnie and Vaughn had to leave and Some new friends showed up to stay and play. Poor Andy got food poisoning on Friday night and ended up spending most of the weekend in the room recovering but other than that it was all good. We dropped the kids off with Dad early this afternoon and I am sure they are both spent!

Eden will start her new Chemo tomorrow. Please pray that this works well for her! As I sat and watched her play in the water with this huge smile on her face I realized that I am far from a strong person. This new treatment has to work and a cure HAS to be found and found soon! I refuse to ever live without her. I have seen so many parents live on the hope that a cure would save their baby only to watch that hope be buried along with their child and I don't know why I think our fight for Eden should be any different as every one of those children were so very special but I know it has to have a different outcome.

Change of Color

This is Beth's Dog Angel!










This is Mandy supporting Pink!

This is Brandon and he is 13. Eden loves the Blue! She thinks its very fitting for a boy.

Thanks for the pictures Brandon, Tina and Mandy...

Eden is still feeling fine. She has been doing antibiotics all this week to prepare for treatment next week. She will start the Irinotecan and Temodar on Monday. We are keeping our fingers crossed that it will help and she will tolerate it. We have big plans for the weekend. We are heading to Fort Rapids indoor waterpark and hotel here in Columbus to spend the weekend. The kids are sooo excited.

Hope you all have a wonderful Weekend!

Pink Pictures from Down under!

This is Karen and she is from Tasmania, Australia. People all over the world check and pray for our sweet baby and we are so grateful! Eden loves all the wonderful pictures and we hope they keep coming in. I am so very sorry I haven't been able to get the link up from Friday's activities but I am trying.....

Pictured from the news

Here are a few pictures that my Brother and Sister in law took from the news report and sent to me.. (what a sweet thing to do) I am sorry I haven't had a chance to get many pictures up from Friday but I am still working on it. I am also going to try and put a few video clips up that we took Friday night. Eden is feeling wonderful and not having any problems. She started her antibiotics yesterday in preparation for treatment to start on Monday. We don't have any new information for you regarding the treatment as we have yet to speak with the Dr. In any detail about it. We were given a free pass from the hospital this week so we are taking it.... We will know much more come Monday.

By the way.. The lady Eden is sitting with is her Teacher Mrs. Russell in her pink wig.... lol Also, miss Eden told me yesterday that Mrs. Russell shared with the class that her baby is going to be a BOY!!!! WOOOHOOO.. We are sooo excited for you Mrs. Russell! (I hope you don't mind that I am sharing)

A Snowman........

Built by:
Riley, Eden, Corely

Pink Hair Picture Link Try Again

Please email pink hair pictures to:

hondale@sbcglobal.net

Pink Hair Pictures

Just so you know mine is not temporary... If your gonna go, go big!

Pink Hair Picture

Joelle












Just so everyones knows Joelle is in Eden's Class with Mrs. Russell. Sorry that I didn't let you know who Joelle was. Her hair is awesome. Keep the pictures coming.

Pink Kinda Day!

I don't Even know where to begin! We found out yesterday that all of the staff in Eden's School planned to Dye their hair today in support of Eden.. (Just hearing about it made me cry) When I showed up at the School this morning they had put together this amazing day for her that I just knew she was going to love. These are the days that make all the bad stuff she goes through worth it. She was so happy and floating on a cloud. All of the wonderful Staff at the K-1 Building had wonderful crazy hair as well as all the kids in her class. It was the sweetest thing I have ever seen and then to top it off the firefighers and police officers from N.A. came to present Eden with a very cute Teddy Bear and flowers and all of the Cheerleaders from the Highschool came by to do a few EDEN cheers and flips and jumps. They also invited Eden to sing the national anthem tonight at the NA Basketball Game and to cheer with them.. SHE WAS OVER THE MOON EXCITED ABOUT THIS! Mamu Hope is trying to put something together for Eden to wear from Aunt Hunny's gear when she was in school there. I tried to Thank each person there but I know I probably missed some so please accept this as my very heartfelt THANK YOU! Channel 4,6 and 10 showed up to get some tape of the event and speak with Eden so watch the news at 5 and 6 tonight if you live in Columbus. I have tons of pictures that I don't have time to upload right now but I promise to get them on here no later then tomorrow. Also there were a few different News Papers there so when those articles come out I will share those as well. I am sure by Tomorrow I will remember more special moments from today to add.

What a wonderful world we live in!!

Pink Hair Pictures

Please email pink hair pictures to hondale@sbcglobal.net

Thanks......

Change in Plans!

I just got off the phone with Dr. Mosse in Philly and it seems that after starting the background check on Edens medical history she is not eligible for the BSO because of the amount of radiation she has had to her Kidneys in the past. There have been a few children who have died on this study early on so they have very very strict guidelines and I for one am glad they are in place. After all of this I refuse to lose her to kidney failure!! SO, we had all of our plans set for two weeks in Philly and my poor sister now has a flight scheduled for Philly from Chicago and guess what... We wont be there!

Dr. Mosse feels very confident about this oral Chemo combo that she would like to try now. This is a very safe combo and the idea is to hit the cancer and reduce her load and then go back another trial .... more then likely the Antibody study. We know that Eden has responded well to chemo in the past and we are hoping she will again! This chemo Combo can all be done here in Columbus which we are thankful for and Little Miss Pinky is going to be pink for a long time cause she aint losin her hair!!!! LOL I just had to laugh when Dr. Mosse said she heard about Eden's pink hair and that this drug will not cause her to lose it. Eden on the other hand is very upset because she was all set to be bald again.... go figure. She is also upset about not getting to go back to Philly any time soon so I promised her we would plan a mini Vacation using the money we would have spent getting to Philly.... If you have any good ideas we would love to hear them?

Keep the pink pictures coming because Eden is going to need company in the world of pink! By the way she LOVES the pictures we have put up so far...

Nothing really has changed we are still in a very tough spot and I cant say if this new turn of events is a good thing or a bad thing because only time will tell. Please keep praying.

More Amazing Supporters!

This is Heather with her three boys and Tina from circle of hope! These are people who have never met Eden.......... How wonderful! I have the promise of many more pictures coming...

A Good Weekend

I have mentioned the wonderful church in LaPorte IN who has been very emotionally and spiritually supportive of Eden in the last few years even though most of them have never met her. Well this weekend I really needed to get away and clear my head so Andy, Eden, Riley and I headed there for an introduction. A little history: The first weekend Eden started to feel pain in her hip which led to her diagnoses of Cancer we where in IN for a forth of July celebration with Andy's family. Aunt Sharon, Uncle Dan, Cousins: Shari, Shane,Tony,Elizabeth,Tyler, Ashlin and many many more were so taken with Eden that when they found out of her illness they were just sick as many of us were. They have taken up vigilance at the Nazarene church in the little town and have recruited many more supporters and it was about time for them to meet the incredible Eden Adams! Everyone we met were so supportive and loving to all of us and the Wonderful Pastor Dan asked Eden to come to the front of the church during Sunday morning service to be prayed for and anointed. It was a very moving experience for me! The kids enjoyed themselves so much that they begged to stay and attend again Sunday evening which we did. By the time church was over Sunday night the weather was getting bad and we felt the safe thing to do was wait until Monday Morning before heading home. It is exactly what I needed to prepare for the next round of treatment! Thank you all so much for your hospitality!

Eden is feeling good and has no outwardly signs of the progression of disease which is Wonderful! We received Confirmation that treatment will begin the BSO in Philly on the 29th of this month. The protocol for this trial states that they must wait 2 weeks between the time they treat each child so there is a child beginning treatment on the 18th of this month so the 29th is the earliest we could do it. Please continue to pray that she has no more progression in that time!

One of Edens wonderful supporters sent me the picture above of her pink hair in support of Eden's fight. It made me cry when I saw it as Amanda has never even met Eden!

Dr. Mosse and Dr. Yeager are working on getting Eden set up for a CT Scan here in Columbus before we head for Philly and other then that there is nothing new.

Thanks for checking in!

Princess Spa Days

So, I'm a little late posting this, but better late than never. On December 21st, Eden took her royal subjects (AKA teachers, Miss Diddle, Mrs. Zorn, & Mrs. Russell) for a girls day at Charles Penzone. She was treated like a princess, complete with gift bag and tiara, and she got a manicure and pedicure. Talk about a princess. Then she got to choose where to go to lunch (when we asked her she said, "I'll give you a hint: it starts with a B and I know there's a "bob" in it.) You guessed it - Bob Evans. It was a great day for all of us! Thanks so much to Annette and everyone at Penzones for making it such a special day for Eden (& her fan club!)

As always Eden's making the best of it......

Eden decided since she was going to lose her hair again, she wanted to see what it looked like pink. So, pink it is! Her and Shelly colored it! Then Eden decide to color the tips of Shelly's because Eden want's everyone to color there hair in support of her losing hers again and email pictures to me. Eden was a big hit at school, the kids decided that the boys are going to go blue and girls are going pink. We'll see how this goes! Eden's pink and blue hair campaign is on. Just remember there are temporary coloring kits available for a picture..... Eden's is permanent by the way!

Addition to :Eden is home!

Many of you are entirely too perceptive! lol But I love that you are always looking out for our girl! I have already had many emails of concern regarding the BSO. Mainly because you remember this drug from Christi Thomas. I had the very same concerns which I voiced to Dr. Mosse yesterday. Of course Dr. Mosse is not allowed to discuss anything with me regarding what Christi did or didn't do and why, but because Angela Thomas was so kind to share Christi's life on her blog in such great detail I am very aware of the difference here and I will try to explain them as gently as possible. When Christi was treated with BSO her Cancer was much progressed and I believe it was being given to Christi on a compassionate basis. Eden’s current Cancer load is very mild and the treatment she will be on is at a much higher dose then Christi did. Christi's Cancer was never one to respond well to chemo where Eden has always had a good response. Please keep in mind that one of the reasons that a cure for Neuroblastoma is so elusive is because each child reacts so differently to treatment. Christi's Cancer was considered Resistant as were Eden’s is Recurrent and believe it or not there is a difference and it does effect how different treatments work. I promise that we will always stay one step ahead of the game as long as that is possible and that Eden's Health, comfort and quality of life are our first priorities.

Philly Pictures

Eden is Home!

Rourke and Eden are back from Philly. Eden is feeling fine! Unfortunately her Scan results were not fine. They found 6 new spot on her MiGB Scan: Skull, shoulder, hip and knee. When you say all of that out loud it sounds like a massive progression of Disease but after a 45 minute Phone conversation with Dr. Mosse she assured me that the progression is minimal but progression is progression and it’s never good! I have attached the MiBG scan for anyone who wants to look at it. It has taken me years to be able to completely understand how to read it but the arrows mark the way. Most of the spots are very very light and the worst is in the hip. Everything else you see lighting up.. Abdomen, cheeks and pelvis is normal uptake of the MiBG. One upside is Eden’s Bone Marrow was completely clean and we will take what we can get! Dr. Mosse and Dr. Maris spoke in length about Eden today before coming to us and feel that a trial called Modulation of Intensive Melphalan (L-PAM) by Buthionine Sulfoximine (BSO) With Autologous Stem Cell Support is what is in her best interest at this time. I realize this is probably a lot of words most of you don’t understand but here is the breakdown of what it all means. Melphalan is a Chemo drug known to work very well on Neuroblastoma. Cancer Cells contain a Chemical called Glutathione which can protect the Cells from Anticancer drugs (Chemo) . BSO is designed to remove Glutathione from Cells therefore allowing the Melphalan to dig deep and destroy the Cancer Cells. As we know Chemo not only kills Cancer cells but also normal fast growing Cells such as Stem Cells which produce Red Blood cells, Platelets and White Blood Cells which is why the Stem Cell Rescue is required as part of this trial. She will also start GCSF right away for White Cells. Fortunately Eden handles the nightly shots very well. She will in fact lose her hair once again but I just got off the phone with her and she assured me she doesn’t mind. In fact when I told her how much I love her bald little head she replied with “I love my bald little head too” She is truly just the bravest little girl I have ever met!

I have grilled Dr. Mosse regarding the trial and why this is what is best for her now and she stated that they have seen some very good results from this trail and it will only be open for so long. The idea is that we try it and if we don’t see good results then Dr. Mosse and Dr. Maris have the ability to put her right into another trial based on patient need. More then likely that would be MiBG Therapy and if it does work we can move on to the antibody study designed to hold disease dormant and save the MiBG study for later use. There is no way of ever knowing what will and wont work so we just try and do our best to stay one step again of the NB and hope and pray we are doing the right thing.

They are trying to get Eden scheduled to start the Trial on the 23rd of this month and she will be there for 5 days.

Rourke and I both feel very lucky to have such wonderful family and friends surrounding us and helping us deal with this situation and I have no idea what we would do without them.

That is all of the information I have for now and we will update you all as soon as we know more. Please take comfort in the fact that Eden is feeling wonderful and handling all of this likes a champ!

Philadelphia ABT-751 Cycle 5 Day 3

So far so good. Tomorrow is the big day. MIBG at 8:00am and meeting at 10:00am then we'll be heading out of Philly. After leaving the hospital today she was in the mood for ihop, having a big mid afternoon lunch. Eden and I then made it to the Liberty Bell and Independence Hall with just enough time for a couple of pictures. Because Art and Crafts are such a big part of Eden's day we had to be back here for dinner and then crafts at 6:00pm. I've already check out so to speak. While Eden was crafting I was sweeping the room and picking up and packing because once we leave here in the morning we won't be coming back. I don't have the ability to upload picture here so I'll send them up when I get home!

Philadelphia ABT-751 Cycle 5 Day 2

Eden and I made it to the hospital today and she did her normal clinic routine and then went off for the bone marrow asperations around 11:00. She ran into Megan one of her favorite RN's her @ CHOP. They ran off and had a nice visit while doing stuff to get ready for the bone marrow. Little Miss Independance doesn't need Dad for all that much.... But, she's teaching me the ropes. After she awoke from the Bone Marrow she was a bit upset, she found out that the access points were in the front of her hips not the rear like normal.... let me tell you she was bent. Later in the afternoon she said that it was ok and really might be a bit better than in the rear. It didn't hurt as much. This afternoon was quite time for her and I both. She wasn't up to much running so we stayed in our room until time for dinner and now she is doing crafts in the living room with a group of kids. Tomorrow is Clinic, Ecko, and MIBG Injection. I'll up load puicture when we make it home! Off to watch a bit of the Ohio State Game and call it a night!

Philadelphia ABT-751 Cycle 5

Eden and I are here in Philadelphia at the Ronald McDonald House. We landed around 1:00pm, picked up a car and did a drive thru by CHOP on our way to the Ronald McDonald House. After, arriving here a bit tired we cuddled up for a quick nap. We came down for dinner provided by the Merion Mercy Academy and ran around outside for a few minutes taking pictures of the Christmas Lights. Eden is playing in the playroom and I'm sitting at a tree typing this in for you. The computer is located in the tree in case you were wondering, Really! She's now playing Dora on the PC next to me. She seems a bit tired overall and her weight is down just a bit, 18.1kg. Eden is working on getting it back up. We have a bunch of questions for the Dr's this week that we hope to get answers for. Tonight I think were going to cuddle up in just a few and call it a day. Eden is NPO at midnight and can only have clear liquids in the morning up to 8:00am. That does is for now. As long as Eden is feeling ok. I'll be back tomorrow night with an update from the days events.

Richmond Family Christmas

I wanted to share some pictures of family that most of you have never seen. The first two pictures are of Riley playing some games with second Cousins and Eden with her Cousins Laura and Jessica who spoil her rotten whenever she sees them.. They just let her drag them around and do whatever she wants and Eden just loves both of them to death for it! The last picture is very special to me, this is Eden with her Great Grandma Richmond. Ruth Richmond is an amazing women who raised 9 children (my dad being the oldest) and lived through losing 4 of them already! I cant begin to imagine the strength she must have.

Daddy took Eden to Clinic this morning and all of her counts are good and holding their own. She hasn't had a transfusion in over 2 months....woooohooooo! Eden finished her ABT yesterday and so far so good.. She is feeling great and not having any side effects...

2007

Eden and Riley had a wonderful New Years Eve hanging with Aunt CeCe and doing a Movie. The kids were out of school all last week and I very much enjoyed being able to just spend the whole week relaxing with them and working from home. Sunday Morning Me, Riley, Eden and Sophie lay on the couch and watched TV together and it’s a moment in time I have burned into my memory bank and will forever hold dear. I wouldn't even know where to begin thanking people that Eden is here to see 2007. Of course my first thanks would be to God and then to the next best thing: Doctors, for there tireless efforts at finding treatments for these children. Our wonderful family and friends who have stuck by us during the worst of times and helped lift our spirits when we thought we couldn't go on.

Many Many children are unable to keep going after Relapsing with Neuroblastoma and in March I was so very afraid that Eden would never see another year and yet here she is happy and healthy and loving life. I know I mention this alot but I feel it’s important to never forget how fragile life is and how fast it can be taken away. Many Families came into this New Year one short and my heart truly breaks for them. 99% of the time I cannot allow myself to dwell on fact that someday we may be in the same position but there is that 1% of the time that I allow it to take over because it’s important to me that I never lose sight of how lucky we are every single minute that we have Eden with us.

Eden Started her 4th round of ABT on Wed and seems to be doing pretty well. She has only thrown up once and that was at 5am Sunday morning. The worst usually starts in tomorrow on her last day of the meds but we are hopeful that we have the right combo of drugs going to prevent most of the side effects at this point. Eden and Rourke will be leaving for Philly on Sunday and Monday morning the she will start her scans. It seems like we JUST did this! This is the first trip to Philly that I am not going on and I have to say I am more then a little stressed out about it...... I am sure Rourke will take wonderful care of her and cater to her every need but as a mother I have the elusion that no one can care for my babies like I can!! Sorry Daddy's but that is our right for giving up our own lives for 9 months to become a human incubator and for giving birth. lol

My wish for all of you is a happy and healthy 2007!