Blogathon Schedule

It is that time again.. one of our favorite Blogger's is set to start her 24 hour blogathon in the morning. Sorry for the late notice. Please go to her site and give if you can. All money goes towards the Neuroblastoma foundation. Eden will be featured at 11am sat morning. Nikki we love you for all of your support and cant wait to hear how things go!


http://www.bloggingforkids.shebecameabutterfly.net/

Anti-angiogenic Chemotherapy

Anti-angiogenic Chemotherapy: A Phase II Trial of the Oral 5-Drug Regimen(Thalidomide, Celecoxib, Fenofibrate, Etoposide and Cyclophosphamide) in Patients with Relapsed or Progressive Cancer

Abstract

Drugs that attack the process of neovascularization, including endothelial cell proliferation, migration and/or tube formation, have anti-angiogenic activity. Chemotherapy, which possesses significant anti-proliferative activity can thus be used to target tumor vasculature as well as the tumor cells themselves. By altering the dose and schedule of a number of chemotherapeutic agents, this activity can be optimized to inhibit neovascularization, required for tumor growth and progression, while minimizing toxicity. A combination of 5 oral agents will be used in a ‘low-dose’ anti-angiogenic schedule designed to target the tumor vasculature. The drugs will include continuous oral administration of thalidomide, fenofibrate and celecoxib with alternating 21-day courses of oral etoposide and oral cyclophosphamide. Patients with poor prognosis disease will be eligible for this protocol. Treatment will be initiated for 27 weeks duration and may be extended depending on tolerability and response. This study will assess the feasibility of this treatment regimen, as well as gather data on the efficacy and toxicity of this approach. A number of biologic parameters will be examined to assess response.

This is the trial that Eden will be starting next week. Just wanted to let everyone know what had been decided on!

Medical Update

After our discussions with Dr Yeager (Columbus), Dr Mosse (Philadelphia), Dr Reynolds (Los Angeles), Dr Russell (Houston), and Dr Sholler (Vermont) along with many others. Here is the current list of options that Eden has available to her.


#1 Boston Trial: Anti-angiogenic Chemotherapy: A Phase II Trial of the Oral 5-Drug Regimen (Thalidomide, Celecoxib, Fenofibrate, Etoposide and Cyclophosphamide) in Patients with Relapsed or Progressive Cancer.
#2 Kettering 3F8's consult with Dr Kushner
#3 Fenretinide in for compassionate use.
#4 Humanized Antibodies
#5 Zoledronic acid and low dose Cyclophosphamide-both are commercially available.
#6 CEP-701
#7 Low Dose MIBG Therapy
#8 Other Antiangiogenic agents
#9 AZD 2171 – New just opened in Philly


Overall directive,
Starve the cancer cells and protect her marrow. Platelets must be 75000 to start any of the trials.

Must redo her bone marrow 3 wks prior to starting any treatment, after starting any treatment we will rescan in a month from the start date.

We have been very busy trying to determine what is the next possible step for Eden and Dr. Mosse is going to email additional information for us to review to help use make the next best decision. This quick list of options is derived from hundreds of phone conversations, conferences and emails. As we get more details and a narrower scope I’ll be sure to get the information on-line for you all to see.

Thank you for all the phone calls, emails and congratulations in regards to Eden, I’m sorry if I haven’t have time to respond. But, as you can see we really have been a bit busy.

Feeling Good

Eden has been feeling great. Everyday she finds something wonderfully fun to get herself into. Monday she went to the Big Splash with Ally and Lil. (waterpark near our home) and Tuesday CeCe took her to Clinic and then her very good friend Nancy took her to lunch at Easton and then shopping at Nordstroms. Today she is with Mamu Hope having a picnic at the park and playing. Every night this week Eden has Vac Bible School and her Cousin Mic has been going with her. She LOVES it and cant wait each day to go back. We had a brief email exchange with Dr. Mosse in Philly regarding treatment options and they are doing their best working as a team to come up with the best plan. The picture posted is from the Yard Sale about a month ago that Sweet Kelly took of her and sent to me. The puppy is Maggie who lives behind our house. We just had new people move into a house that connects to our back yard fence and they have 4 little Yorkie's that Eden promptly fell in love with. She amazes me everyday. Her counts were good and she needed no transfusions on Tuesday. She will head back to clinic on Friday

NED

Rourke spoke to Dr. Yeager this morning and Eden is officially N.E.D!!!!! I cant tell you what a wonderful blessing this is to us! The last few months have been very calm because the MiBG treatment was done and there was nothing for us to do but wait and we felt comfortable that the treatment would do its job as it did the last time so this last week was extremely stressful going back into the pits of Nuc Med for scans and once again watching the image of her little body show up on the screen and holding my breath looking for spots to light up.. People always ask how do we do this day in and day out and some days i can honestly say I DON'T KNOW and then one smile from her or hearing that amazing little giggle and the world is right again and i know there is nothing in this world i wouldn't do to know i can see that smile again tomorrow. I think and pray every day for so many parents who no longer have that and i know how lucky we truly are.

Many people have emailed in the past few days confused as to our "concern" about clean scans.. Please understand there is nothing in this would more important then clean scans to us but even though we cant see the Cancer Cells in there they are for sure still there. No doubts in anyone mind and it will come back. It is imperative that we get her back on a treatment plan ASAP to try and keep the Cancer quite for as long as possible while her body heals and the Dr.s continue to look for a Cure. Doing nothing is not an option. The problem with finding a study for her is there aren't any open at this time for a child who is NED. We will probably ask to put her on one based on Compassionate use. This status is used to allow children into studies they would otherwise not qualify for. They have very strict guidelines for studies for a very good reason.. If they were to allow children who are NED onto a study it could upset the results of the study if favor of the drug just as if they allowed children with extreme amounts of cancer it could upset the results the other way.. When a child is allowed on a drug on a compassionate basis the results will not be included into the study. Dr. Yeager is working with Dr. Mosse in Philly as well as Dr. Reynolds in CA and next week we will be meeting with them to discuss what is next.

Thank you for all of your prayers! We couldn't do this without you.

Scans

Pictures provided by Flashes of Hope. While in Philly.

Eden had her MiBG Scan on Wed Morning and i spoke with Dr. Yeager yesterday afternoon. Her Scan is completely clean!!!! Thank you all who have been praying for her! This is proof that it makes a difference. The MiBG Scan is the best and biggest detector as to what is going on in her body so we feel very comfortable that the rest of her tests will be OK. She had her Bone Marrow done on Thursday Morning and we should get the results from that on Monday however it would be unlikely to see anything there because it has been Neg for almost a year now. She had her CT Scan today and again it would be very unlikely to see anything here when the other scan was clear. They will however be looking at her abdomen area to decide if they need to remove her Gallbladder while she has good counts. If that is what needs to be done then that is what needs to be done. We are just very thankful that it didn't become necessary while her counts were in the tank.

Edens Bone Marrow will be heading to four different states to be tested for any Neuroblastoma cells. If they can find even one, she will be eligible for many different studies however if none are found it is my understanding we will be very limited. Eden must stay on some sort of treatment, just because we cant see Cancer cells we know they are there and waiting for their chance to strike and its imperative we don't give them that chance.

Medical Info in Eden's World

Just to let everyone know what is going on medically in Eden’s world. Today she will be at clinic for counts and will be going through the MIBG Scan, CT and Bone Marrow Biopsy during the rest of the week. Thursday will be the big day for the Bone Marrow. So, please keep Eden in your thoughts and I will get results of the testing process up as soon as we know.

Last of the pics

OK. So here are the rest of the pics from Vac and I think I am hitting all the high points with these. We just had the most wonderful time that Eden has already asked if we can go back again very soon. On Tuesday Eden and CeCe and I went to Clinic in Orlando to have her counts checked and Riley and Justin(Riley's friend who went with us) went with Andy and Rod to Sea World and Eden and I joined them shortly after. We saw so much i cant even begin to go into it all but one of the best was seeing the Whale Show.. After watching this, it is my belief that doing something like that could be Riley's calling. He has such a deep love of any and all animals and they respond so well to him I have no doubt that if he wanted to be a trainer he would be amazing at it.

On Wed we had plans to go to Disney because CeCe and her wonderful colleague Nancy set up Dinner at the Castle for us on that day but Riley and Justin didn't seem very excited about Disney so Andy and Rod took them to Adventure Island which is part of Universal. So it was just Me, Eden and CeCe and we had a blast. We got to do all Girly stuff the whole day. Eden was able to meet Arial and Cinderella and we had a wonderful dinner at the Castle and was entertained by the Fairy godmother and the mice. As we were walking out of the Castle the Fireworks were about ready to start so we sat down and watched those. It was truly a magical day for all of us..

On Thursday we were all exhausted and spent the day lounging around the house and swimming which was very nice. On Friday we headed to Universal and adventure island and Eden decided that she would only be going on scary fast rides but she LOVED them.. We did Twister and Earthquake, and Revenge of the Mummy and Jaws and Men in Black and Jurassic Park and so many more that i just cant remember. It was 100 Degrees there every day with what felt like 100% humidity and i was very concerned about Eden getting over heated or to tired which would quickly cause her to have a fever and promptly end our Vacation so we wheeled her around in a wheelchair whenever we went to one of the parks. At some of the rides this gave us special entries into the rides and at first i felt like we were taking advantage but in the end i truly believe Eden would not have been able to make it without the wheelchair. She felt good at the end of each day and that was our goal.. I cant say much for the rest of us who walked miles and miles and miles in the heat but it was so worth every step. I do have more pictures to share in a few days from Flashes of Hope. They came to visit us while in May while we were in Philly and took some amazing photo's and they showed up in the mail while we were gone.. The Wonderful Debbie set it up for them to come and they did such a wonderful job.. I uploaded more pictures below this entry so don't miss them......

I almost forgot to Mention Eden insisted on wearing her sandals that had 2 in heals so she would be sure to be tall enough for most of the fast, scary rides and one of her most wonderful School mates Ashley who moved to Pitt sent her a "princess hat" and she wore that the whole time because it gave her another in............... she is the funniest thing ever

Pictures

Long overdue

Hi Everyone.... sorry for the delay. We spent 11 wonderful days on Vac in Florida and we didn't stop for one Second! Our trip started Friday the 22nd and we drove to Gatlinburg TN where we spent the night and rode the ski lift up into the Smoky Mountains and went to the Ripley's museum. Sat we headed out again and stopped for the night in Atlanta and hung out by the pool. Sunday we made the final push to Orlando. The very wonderful and generous CeCe rented a huge house with a private pool and hot tub for us to spend the week in. So Sunday we just hung out at the house and Monday we went to get food for the week and swam and headed to Wonderworks Monday night. All of the pics you see are from there. Riley and Eden had the most amazing time!!! This place is made to look like a Building that fell over on top of another building as you can see in the pictures and inside it has over a 100 interactive actives for kids and adults alike. We played Lazar tag and then went to a magic/dinner show in the building. you can see from these pictures we really enjoyed this place. I will update with more pictures tomorrow from Disney, Sea World and Universal studios and Islands of Adventure.

Thanks for checking in!

More Pics

Pics from Vac