The wheels on the bus go round and round

Edens week was much better then last week. She is just getting to a point of really eating again but she hasn't had the belly pain that she was having. She has made to school all week and on Wed they had a PJ party that she really liked. Tonight they had a little gathering for the oncology kids at children's and Stinger from the Blue Jackets was there. They are starting a new program where the kids get a bead to add to a very special necklace they were given each time they have anything done at the hospital.. (kinda good that didn't have this two years ago or Eden would need a crane to carry around all the beads) Anyway it was a lot of fun and she was able to spend a little time with beloved nurses that she doesn't get to see very often and some of the kids we have known for years.

We got on line today and looked at her Tree on the Lunch for Life Website and she was so very excited to see so many ornaments on there.. She says it looks so pretty.. Mommy loved seeing them as well because I look at each bulb as an opportunity for a cure... Thank you all so much for logging in and helping out! We never know which donation will be the one that finds the cure that saves her life!

Both of the kids have a very busy few days.. Tomorrow after school they have a date with Cindy and Rich. They are doing Dinner and a Movie and are very excited about it and Riley is having a friend spend Friday night with him and Sat he is going to a Birthday Party sleepover with a bunch of his friends from School and Eden is going to the Circus Sat afternoon.. We are leaving early Sunday for Philly once again but this time we will be there until Wed. Please keep Eden in your thoughts and prayers as we go into Scan week.

The Giving Tree
This year, Lunch for Life is getting into the holiday spirit! Thanks to the efforts of CNCF and an anonymous donor, your giving will translate not only into desperately needed research dollars, but also into gifts that will brighten the lives of these children. And one child will receive an all-expenses paid dream vacation to Walt Disney World, with the help of some incredibly generous donors.Here’s how it works: Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation has three effects: 1) the tree of your choice receives 1 ornament for every $5 you donate; 2) every donation generates a Giving Code which can get you bonus ornaments when your friends type it in; and 3) each ornament placed on a child’s tree creates one entry for that child into our Disney World giveaway. For example, if I donate $15 to a specific child’s tree, then that places 3 ornaments on his or her tree, creates 3 contest entries for that child, and generates a Giving Code for me to pass along. When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begins all over again. For each present, the family can elect to receive one of several donated prizes for the child (including board games, stuffed animals, a gift card to Toys R Us, or even the ability to turn multiple presents into a portable DVD player or other bigger gift).Remember, now your lunch money can help save these children’s lives by funding scientific research on Neuroblastoma, while also bringing smiles to their faces with their own virtual trees and real presents. Please help make these holidays special for these wonderful children in need.https://www.lunchforlife.org/donate.aspxEnter the code: 19544 to double Eden’s entries in the contestSo click the link above and donate in honor of EDEN RAE ADAMS. Help raise money to find a cure and send a child to Disney…maybe Eden will win the trip, but all of the children with neuroblastoma will win when the cure is found.

As the parent of a Child with Cancer there are nights when sleep is not an option for many reasons. She/he is sick and cant sleep or meds must be given at all hours of the night or the couch in the hospital is less then hospitable….. I feel very lucky that none of those are the reason I am awake at 1:45 in the morning. My mind is unable to slow down enough to rest.

I read many blogs and websites of children with Neuroblastoma and other cancers and I cry and pray for these families and often I find myself shocked at the strange little things they do to get through life that I thought only I did……. While reading Angel Christi’s blog her Mom mentioned that she found herself at a loss for a wish on her Birthday this year because for 4 years all of her wishes had been the same and that is when I realized that for the last 2+ years I haven’t blown out a candle or thrown a penny in a fountain or looked at the first star of the night without wishing for a cure for Eden.. It’s just automatic. I haven’t said a prayer in the last 2+ years that didn’t involve me begging for more time with her. I haven’t sat and listened to a friend complain about something going on in their life without thinking how much I miss worrying about other things. Not to say I think that each persons problems are less important then mine by any means. But some days it’s hard to remember what life was like when I wasn’t consumed with saving Eden’s life. We will be back in Philly in less then two weeks for scans and its time for that little pang of panic to set into the pit of my stomach that gets worse with each passing day as Scans get closer and by the day of, its all but impossible to keep from jumping right out of my skin. We will continue to move forward and be thankful for every day that we have with her!

She is still not feeling great but she does seem to be eating some now and drinking lots of water. It is my hope she will feel back to her old self tomorrow. As Rourke said the belly pain and nausea are all side effects of the ABT-751 but as long as the side effects are tolerable we will stay with it! She has been on many many drugs with much worse side effects and it is our job to choose the less of those evils. She is not completely down and out with the problems she is having.. She is still up and playing and being as rotten as ever but she is a little more grumpy than usual and maybe a little more tired.

Thank you for keeping her in your thoughts and prayers!

Not a good start

Eden was schedule to visit Columbus Children’s for a clinic appointment at 8:00 am for counts this morning. She did not need any blood products but we did hydrate her for about three hours. Today did not start out all that well for Eden; we started the morning with her getting very sick. This was a black tar substance that I had not seen come out of her in a long time. Her temperature was normal but she was telling me that her stomach hurt. This pain was not a normal belly ach. One of the side effects to the ABT-751 is stomach pain. She had a decrease in appetite that started on Wednesday. She had been eating from the time she gets up until she lays down for the night. After leaving the clinic she managed to get about a three-hour nap in and is still seems very lethargic and achy. Tonight will be a quite evening and probably go to bed early and hope that additional sleep / rest will help her to get though this phase.

Happy Thanksgiving

Eden and Riley wanted to wish everyone a safe and wonderful holiday!

The Giving Tree

This year, Lunch for Life is getting into the holiday spirit! Thanks to the efforts of CNCF and an anonymous donor, your giving will translate not only into desperately needed research dollars, but also into gifts that will brighten the lives of these children. And one child will receive an all-expenses paid dream vacation to Walt Disney World, with the help of some incredibly generous donors.
Here’s how it works: Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation has three effects: 1) the tree of your choice receives 1 ornament for every $5 you donate; 2) every donation generates a Giving Code which can get you bonus ornaments when your friends type it in; and 3) each ornament placed on a child’s tree creates one entry for that child into our Disney World giveaway. For example, if I donate $15 to a specific child’s tree, then that places 3 ornaments on his or her tree, creates 3 contest entries for that child, and generates a Giving Code for me to pass along. When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begins all over again. For each present, the family can elect to receive one of several donated prizes for the child (including board games, stuffed animals, a gift card to Toys R Us, or even the ability to turn multiple presents into a portable DVD player or other bigger gift).
Remember, now your lunch money can help save these children’s lives by funding scientific research on Neuroblastoma, while also bringing smiles to their faces with their own virtual trees and real presents. Please help make these holidays special for these wonderful children in need.
https://www.lunchforlife.org/donate.aspx
Enter the code: 19544 to double Eden’s entries in the contest
So click the link above and donate in honor of EDEN RAE ADAMS. Help raise money to find a cure and send a child to Disney…maybe Eden will win the trip, but all of the children with neuroblastoma will win when the cure is found.
My goal for Eden is a couple of presents under the tree and full tree of ornaments. Thank you, Rourke

Toothless

Eden lost a tooth yesterday on her way home from school on the bus. She was so excited to share, She even went in and signed the tooth chart in the nurses office at school. Everyone has ask for a current picture. This picture was taken minutes ago. 8:21 pm 11/21/06. Yesterday and today have been lots of fun. Eden is really handling the ABT-751 very well. Today was her last dose for two weeks.

Thanks for checking in.
Rourke

GO BUCKEYES!!!!!

GO BUCKS, MICHIGAN SUCKS WE HAVE THE RIGHT TO KICK YOUR BUTTS........ GOOOOOOOOOO BUCKEYES!


I know it’s not politically correct to allow my 6 year old to say Sucks but in this case we made an exception. Eden walked around all day Friday and Sat singing this little tune Stef came up sat morning to spend the weekend with us and she just happens to be a Michigan fan so at the last minute she converted Eden to the bad side and I had to sit her on the front porch until she came back to see things my way. It only took about 3 minutes. lol.

Eden had a great weekend. She started her second cycle of ABT-751 last Wed and she is having no problems with it. We couldn’t be happier! We really don’t have any thing new to add to the website because things are going so well. So I will ask that you please say a prayer helping us Thank God that she is doing so wonderful. Please check out Lunch for Life and see how beautiful Eden's Christmas tree is starting to look. Please remember that all donations to lunch for life are earmarked specifically for Neuroblastoma Research. Link is at the right of this page.

We would like to wish each and every one of you a Wonderful Thanksgiving!

I pray for peace and comfort for those who lost a child to the monster this year and must endure this holiday season without them.

ADD ON .................. As soon as I finished this update and posted it, I received this email from Dr. Mosse and wanted to share:
Hi Lisa,
Eden's urine HVA and VMA are both completely normal. I hope that Eden
continues to feel well and that you all have a wonderful feast on
Thanksgiving!
Sincerely,
Yael Mosse
ps: Great OSU game!

Lisa

Home Sweet Home

We are home and all is good. Eden did such a wonderful job on the long boring trip to Philly. Eden and CeCe had a sing along which is always very cute and she played pixter for hours and colored and watched Sponge Bob and Hee Haw. She is so amazing! We drove up to CHOP right at 11:30 and the wonderful nurses were there waiting for us. We have have two nurses that handle the blood draws for the trial and Eden loves to see them and one of them has a sister who is a nurse at Childrens Columbus and told Eden a childhood nickname of her sister so as soon as Eden saw her yesterday she started calling her Cheche Bird. We all got a big laugh out of it and the nurse in Philly in turn gave Eden her sisters nickname, So Eden cant wait to get back to Clinic to share it with all of the other nurses. They all remembered that our last visit was just before the Halloween party and asked it. These people see hundreds of children every month and it is so sweet that they remember specific details about Edens life to talk to her about. There is a wonderful Social worker there named Dana who always stops by to see Eden and they sat and blew bubbles for 20 minutes while waiting for Dr. Mosse and Pat. Dr. Mosse was very pleased at how well Eden looked. She has tons of energy and is feeling great. Eden put Dr. Mosse to the test with a little trick she learned. You sit on a chair and lift your right foot off the floor and turn it clockwise and with your right hand you draw the number 6 in the air while keeping your foot going clockwise. Everytime your foot will change directions and when Dr. Mosse couldn't do it we all had a good laugh.

Dr. Mosse said that of two urine tests done last time we were there that one came back completely normal and the other came back very high indicating large amounts of disease in her body but because it doesn't match anything we are seeing on scans they feel the test was incorrect. She said that something Eden could have eaten that morning could have skewed the test and she wasn't worried about it. The test will be done again from the sample from yesterday and Dr. Mosse said she would email me the results. However, whatever it shows it will not change out plan. Dr. Mosse feels Eden is on the best plan for her at this time. All and All the appointment was very uplifting and I am working hard at not focusing on this one concerning thing. Our lives turn in very vicious cycles with this horrible monster. When things are bad we always know what to expect and there are no suprise or disappointments and all we want is for her to improve and when things are good we constantly worry about when the next shoe will drop and what is coming around the corner when we should be just enjoying the good times. Its a balance I have not yet mastered but getting better at.

Thanks for checking on Eden and don't forget to visit Lunch for Life and visits Eden's giving tree.
http://www.lunchforlife.org/home.aspx Code: 19257

Philadelphia Re-Bound

Everything went well and they will be returning to Columbus after midnight.
That was a bunch of traveling for a 1 hour and 15 minute appointment...... But all it good to go for another three week

Philadelphia Bound

Eden is on her way!
Her appointment is tomorrow, so the plan is to drive as far as they can tonight, find somewhere to stop, get some rest and then finish driving in the morning. Lisa, Aunt Cece and Eden are going to make a girls trip out of it.
Just wanted to let everyone know that they were on the road.

National Tree.

Located for the entire month of December in the Old Post Office Pavilion, 1100 Pennsylvania Ave NW, the 25 foot tree glitters with thousands of gold ribbons, each bearing the name of a child who has, or has had cancer.
Please honor our cancer children by supporting this year's Awareness Tree Event. Order your ribbon and have it added with your child's name to the National Tree.
http://www.candlelighters.org/cancerawarenesstree2006.stm

Eden and Riley had a wonderful weekend. We went to see Flushed Away and they both loved it. We stayed busy pretty much all weekend and Eden had no trouble keeping up. On Sat. Cece invited us to an OSU party at the Columbus Athletic Club Downtown and they had tons of great food and little gift bags for all the kids and bowling! We had a very nice surprise when Julieanna from Eden’s class was also there and as you can see by the pictures they had a blast bowling. I so wish I had video of it as I cant remember the last time I laughed so hard. When they weren’t bowling they were sitting in front the gentleman hired to juggle and make balloon animals. They watched him for well over an hour and I have to say that I watched for a long time as it was pretty interesting the things this man could make out of Balloons.

Eden didn’t make it to school today because she is having some potty issues and was concerned about having an accident at school. Completely understandable! This is probably our fault because constipation is a very likely side effect of the ABT-751 so we have been trying to be proactive with her stool softener as well as a powder called meralax that we mix with juice. Every child is different so it’s kinda a trial and error process and although this was not the effect we wanted it is better then her being constipated which is very painful for her and dangerous.


We are heading to Philly tomorrow for Eden’s checkup on Wed. And then turning around and heading right back. The Wonderful CeCe has offered to ride with us so what we would could be promised many many hours of singing Christmas Carols………lol There is a station here in Columbus that has been playing them for the last two weekends so every time we are with CeCe we must listen to them… Ugh … how can it be that time of year already?? Eden is not happy about the idea of driving all that way for a checkup and then right back.. She is so funny… “Mom, are you kidding me? They want us to drive all the way to Philly for an hour checkup? Are they crazy?”

Because we will be making so many trips we are starting to look into alterative methods of getting there as driving is always an option it is a very very long time for Eden to be stuck in a car. 10 hours one way…… (Not to say in the least that we are complaining.. I would walk there with her on my back if that is what it took to keep her feeling this good.) And we have been so blessed to have Capt Jack willing to fly us back and forth up to this point but that is a very expensive kindness on his part. Flying Commercial would be about 400.00 a month which we won’t do unless it’s the last option and we have even looked into going by train which is what we may do for our trip in Dec. We can drive to Cincy or Cleveland and catch the train and ride all the way to Philly for about 150.00 total. The only downside to the train is it can take anywhere from 12 to 16 hours to get there but I thought it might be a fun adventure for Riley and Eden once or twice. So we have many options to consider and I now pray that we have the opportunity to exercise them all and this drug works for Eden for many years to come.

New Treatment Information

Eden is doing well and at school today. She is off to clinic after school for routine blood tests.

Today is a huge day for our friend, Sammy Hutchinson. Sammy has been trying a new neuroblastoma treatment, topetecan/cytoxan/nifurtimox in combination. He is doing his MIBG scan today to determine if this new treatment is fighting back against the cancer.

Sammy's dad, Neil and John London, father to Penelope London (another NB fighter) got this treatment approved for use in pediatric NB patients. They are proof that parents are going to be the ones who continue to push the limits with the doctors and researchers to find the cure for our children.

Nifurtimox is a therapy used to treat Chagas Disease. It is a disease seen mostly in South America. A young girl with NB had become transfusiondependentt and contracted Chagas through one of those transfusions. She was using topetecan and cytoxan to treat the NB and her doctor added in Nifurtimox to fight the Chagas disease. This young girl achieved NED status after this treatment regimen.

The doctor who treated this girl presented an abstract at a recent "Advances in Neuroblastoma Research (ANR)" conference. John and Neil researched and contacted the doctor and convinced her to allow this treatment to be tried on other NB fighters, who had little to no treatment options left. John London jumped through hoops and somehow managed to get the correct approvals through the FDA and other groups to get this treatment for Penelope. The doctors had sent Penelope home with no hope as she had exhausted all treatment options that her body could handle. Over eight weeks later, Penelope is doing very well and full of energy and life.

Neil managed to get Sammy started on the same treatment plan. Today is a huge day for the Hutchinson family. If the scans show stable disease or regression, then Neil will fly from California back to Vermont to pick up another supply of Nifurtimox for the next round. There is so much riding on the scan for Sammy and for the rest of the NB world.

Sammy and Penelope are heroes to us. They are on the cutting edge of new treatment. They could be the ones to prove that this treatment is a part of the cure for NB.

The TEAM SAM website is http://www.teamsam.com/.

The Caringbridge site for Penelope is http://www.caringbridge.org/ny/penelope/

Eden and her race cars

Well, not really! The cars are Thanks to Jack Minor at Jax Wax here in Columbus. Just so happens it is on the way home from Children's Hospital. Eden and I stopped by so that she could have her picture taken with them. Since Eden had a transfusion on Monday, It did not allow her to make it to school. So, what does every six year old what to do instead? Go Racing. Eden loves to talk cars with Jack!! Today was a good day. Eden was feeling great and even had an extra tutoring session after school with her teacher. Eden was exhausted and asleep before 9:00.

Clinic Results

Eden had clinic yesterday and her hemoglobin was a bit low. 7.8 It really needs to be over 10.0, so Eden ended up getting 200ml of red blood. Her ANC is 1404 and Platelets are 63. She slept through most of the transfusion, along with daddy. We get our cuddle time in when we can. Her physical exam seemed positive. As of now, she is not having any related side effects that are typical to the ABT-751. She is getting ready to return to Philadelphia on November 15th to continue the ABT-751. Eden and Riley ran the neighborhood for a while and we settled into our evening routine. Today after school, Eden will have a tutoring session to help keep her up to speed academically. I have some new pictures that I will post later.

Living Life

I have added some pictures from Tuesday below.....

Eden is still feeling wonderful and having no side effects from the Meds.. (Thank God) I can honestly say that I never see the child without food in her hands which a wonderful sight. She is gaining weight and she looks great and feels great. She has so much energy and she is enjoys being back at school all the time. She has such wonderful friend in her class not to mention a wonderful teacher and of course Miss. Diddle and Mrs. Zorn. Everytime I walk into the class the girls ask me to please please set up a play date for them with Eden and you have no idea how happy I am to say yes and know that I can now! As I am typing this She is rolling around on the floor with Sophie and I try to soak up every second of this wonderful time.

I had a few calls yesterday that left me in Awe. Andy's Aunt Sharon from IN called to check on Eden and tell me about the wonderful people at her church that pray for Eden everyday and ask about her every Sunday even though they have never met her. How blessed are we and I want to thank each and every one of them as I believe it truly does give Eden strength during the hard times as well as me. I am hoping to be able to plan a trip there for church service very soon. While Eden was in the hospital we received a beautiful gift from our church.. A prayer blanket made by the wonderful people there who prayed over the blanket while making it. Eden loves to sleep with it! You never know where the next act of kindness is going to come from but I am never surprised anymore by it as I have seen so much of it over the last few years. The wonderful couple who own the house that I rent are truly sent from God. Over the past year they have been so amazing to me and to Eden and always offered to help in any way they could. They were huge supporters of the Yard Sale we had to benefit Eden over the summer and have always been clear they are understanding of the situation with Eden. This only gives a small glimpse of the kindness we have seen and it is my intention to share more with you in the future so there is never a doubt that kind and caring people populate this world and are there just waiting around the corner for you.

Lisa

Pictures from Trick r Treat 2006