Going Going Gone!

That is how I describe Eden's Counts yesterday.... Her Red Blood was 6.4 and her platelets were 11 :( So she has to have a Blood transfusion and a platelet Transfusion... Her white count is still holding its own for now with an ANC of 1427. I am not sure what the plan is for a Stem Cell Rescue. I think if her ANC were low then it wouldn't be a question but we can continue to give platelets and blood and keep her in the safe zone long enough to give her body a change to fight back... I am sure that Dr. Yeager and Dr. Mosse are staying in close contact and will let us know when the time has come to get her counts up once and for all. She is having a pool party at school tomorrow early afternoon and then we will head right from there to clinic to see if she needs another fill up for the weekend. We went over to Cece's last night for a swim in the 90 degree weather and had a good time. Eden loves to jump from the pool to the hot tub and i don't know how she does it... Al thought the pool is heated to 80 the hot tub is around 103... way to extreme for me.. one or the other.....

We are having the second half of the Eden benefit yard sale on the second weekend in June with more stuff than you can even imagine. Rourke sent tons of things left over from the one a few weeks go to goodwill and we still have a complete garage full and more coming every day. If you have something you would like to donate or if you would like to help out during one of the days please send me an email. Eden and Riley will be having a bake sale and a lemonade stand.. should be very cute! I will give all the details later this week.

Long Weekend

Here is hoping you all had a wonderful long weekend. Eden and Riley spent the weekend at the Houseboat with Mama Hope and Papa Ron and although i don't have a lot of detail about the weekend it sounds like they had tons of fun. One thing i got from Eden was that she went tubing ...... a few times! What more can we ask for? She is truly feeling wonderful. They got back in town around 7 last night and we ran over to say hi to Cece and swim for a few minutes and roast some marshmallows over the fire and headed home to get ready for the week.

Eden did have clinic on Friday and once again needed Blood but her platelets were still hanging in there. They are going lower and lower with each visit but so far no transfusions. We are heading back to clinic today after school to see how she is doing. Her white count has also been holding its own so far. We expect things to get a little worse before they get better so we are prepared to hear bad counts each time we visit the clinic and its so hard to say when it will happen. MiGB is much more unpredictable then Chemo in that aspect.

Maybe Mama Hope has some pictures from the weekend we can upload!

Have a great short week!!

All is Well

Eden has been feeling well and going to school. Eden and I went to clinic on Tuesday and Eden did need blood but everything else was still OK for now. Her Platelets are starting to drop while her White count has gone up. Once everything kinda hits its low point we are counting the days and if it goes to long she will get a Stem Cell Rescue. Although we do have plenty of Stem Cells saved in California, we would prefer to save then whenever possible. Outside of effecting her counts the MiBG therapy didn't seem to have any negative effects on her. We love anything that helps her without making her sick. Eden and I are heading to clinic Friday for counts and things.

Penelope Jane London

Penelope was diagnosed in Nov 2003. (8 months before Eden) She died yesterday morning in the loving arms of her parents. You will never be forgotten!

We have watched so many sweet, smart, vivacious, Innocent children die over the years and my heart asks the question why isn't this the topic of every discussion on earth? There has to be an answer? There has to be a way to stop this from happening even one more time? There must be a way to save these children? My head tells me this is a completely unrealistic and selfish feeling but for today i will let my heart over rule my head. Penelope was a precious 4 years old. Please pray for her family as their hearts are breaking and their family will never again be the same.

Heroes and Warriors

Today we have said good bye to one of the most amazing warrior princesses ever created: Penelope London. Penelope and her family have fought this nasty beast called neuroblastoma since 2003 and have made HUGE strides in the pioneering of new treatments for this cancer. Penelope is our hero. She has fought bravely, with no complaints and always a bright attitude.
Penelope London will always be remembered as the true Princess that she is. Thanks to the paths that she has broken, many children have been able to fight this beast and remain with their families for longer then expected.

Clinic

Eden had clinic today and all was well. Her WBC was 2.39, Red was 8.4 and Platelets were 153. ANC 1090. She will go back on Friday to check them again. Once her ANC hits 750 she will need to start her shots again. When she woke up Sat her back was bothering her somewhat and seemed to effect her throughout the day. We decided to send an email to Dr. Mosse to see if she had any insight into the pain. She responded on Sunday and said she would double check Edens scan for any spots on her spine on Monday. Her email yesterday said her spine looked completely fine. She has not had the pain since Monday so it may have just been from lying in bed all week. Eden has been seeing a chiropractor to help with some of the muscular discomfort. So, off to Dr. Mike she goes. She is currently feeling good and has made it to school all week so far..
Thanks for checking in!

Friday Morning with the Horses

This morning we had some time to kill before we had to leave for our flight so we went for a walk and ran into a horse.... Eden fed him some cereal and thought it was the funniest thing ever. She said it tickled her hand. She was so cute with the horse that I was compelled to pay for a ride. What's a mom to do?? It turned out to be a very enjoyable half hour. We learned some of the history of Philly and Eden asked lots of questions and she was so very happy.. She told me time and time again throughout our day how wonderful this morning was.. She is feeling great and currently having no problems. Dr. Mosse sent me an email this morning to let me know Edens scan showed a few places that we are not able to see on the "normal" scans but over all her disease is very minimal. She should continue to feel well for awhile and in probably 14 days or so her counts will start to drop and she will need probably two platelet transfusion a week until her counts come up on their own or she gets a stem cell transfusion. Either way don't forget to give Blood whenever you are able. Not only is Eden counting on you but 1000's of others need your help also! Please look below for more pictures....

More Please Touch

Look there's Goldilocks with the three bears................ oh wait that's princess Eden! There she is walking through water and playing Alice in Wonderland. She also built a house and laid tile and did laundry and ironed everything... This place sounds like an adults worst nightmare but kids seem to just love it.

Please Touch Museum

How cute is this? This is the kids supermarket at the Please Touch Museum in Philly. Eden loves going to this place and begs to go every time we are in town. The Ronald McDonald House usually has free passes for families so it works out perfect.

I'm heading to the Airport to pick the Princess up here in just a bit....

She is wound tight and ready to party.... I talk to her several times and she sounds wonderful. I'll give you an update later.

HANGIN IN PHILLY CONT..

I am not sure which order the pics will download in but should be pretty easy to figure out what is what. Three are from this morning with her doing what she does best. EAT.... They have a wonderful system set up here at CHOP. It is basically room service. They don't deliver Breakfast, Lunch or Dinner. When she is hungry she looks on a menu and we call and order food and in about 20 min it is delivered..... how wonderful is that??? And the best part is she can order breakfast all day!! This morning she had a Mushroom Omelet and two pieces of Turkey sausage and french toast sticks and then we had to order a second Omelet and they mistakenly brought her a Pizza with Mushrooms so she ate that while waiting for the Omelet...lol I just called to order her Frosted Flakes and Rice Crispes so she will be eating again any time now.....

I also added a picture of what the room looks like while she is getting the two hour injection of MIBG. She started asking first thing Tuesday morning... "am i radioactive yet?" and asked right up until the minute the injection started.. So Cute. We kissed and hugged and hugged and kissed until they told me i had to move away... trying to get every second in to make up for the days we will not be allowed to touch. If it wouldn't jeopardise the hospitals ability to give the drug here i would be more then willing to risk myself to continue to hug and kiss her....

The final pictures are of her on Monday morning at the Cereal Bar. She loves this place and as soon as she knows we are coming to Philly its the first thing she asks to do. I have no idea why she loves this place so much but if it makes her happy it is more then worth the $5 for a bowl of cereal.....or in her case two bowls... Her first bowl was fruity Pebbles with M & M's and then a bowl of Lucky Charms with extra Marshmallows.

She had a Foley Cath inserted on Tuesday morning that keeps the MiBG from sitting in her Bladder but once again it didn't work very well and leaked from the start. So i had to get up every two hours to change the bed where it was leaking.. They finally decided to just remove it this morning. So things should be better for her. We will still have to get up every two hours to use the bathroom but as least she wont have to lay in it this way.

We will probably be discharged tomorrow sometime. Her levels should be good to go when they come up to check around 10 in the morning but we will have to wait until they can get her in for the MiBG scan before we can leave. This scan is basically just to get a really good picture of her current disease. The levels of MiGB are more then 10 times what they would give her for a reg scan so just like last time we will see a much worse scan then we saw two weeks ago but it is completely expected and nothing to fret about.

I had a very long conversation with Dr. Mosse yesterday and she is very happy with were Eden is at right now and we talked about what is next and there are many options to choose from based on what her scans show 5 weeks from now.

I wanted to ask for prayer for a little girl we met here yesterday. Her name is Melanie and she is 3. She also has Neuroblastoma. She had MiBG Therapy here a few weeks ago and just had her Bone Marrow Biopsy and from what i can get it was worse and today was her CT and MiBG Scan.. I see the worry in her mothers eyes as she waits for the Dr and i know that feeling so well. Please keep Melanie and her family in your hearts and prayers today.

HANGIN IN PHILLY

Philadelphia Day 3

The MIBG Treatment started today about 2:22pm and was finished infusing about 5:30pm. Her reading at 5:30pm was 30; we need the radioactive reading to be below 7 before being released from the hospital. As for the day, Eden was a bit down when I spoke with her earlier but she’s looking forward to being able to go to the Touch Me, Feel Me Children’s Museum on Thursday. Therefore, she has a goal.

Philadelphia Day 1 and 2

Eden made it to Philadelphia on Sunday about 10:00 am. The Ronald McDonald House was her first stop for her usual fun filled party. Eden and Lisa managed to get a nap in because there day started at 3:00 am to get to the airport and make there flights. At CHOP on Monday, Eden was admitted to start Pre-hydration and a RBC transfusion. Today "Tuesday" she will begin the MIBG treatment.

Front Page!

Eden made the front page of the Columbus Dispatch this morning! The article was mainly to recognise the Amazing Seniors at New Albany High school for their selfless act of inviting Eden to their prom and making it such a wonderful night for her. Check it out at:

Columbus Dispatch

Friday is the big kick off off the third annual Benefit Yard Sale for Eden. We hope to see you there and from what i hear there is more this year then the last two years combined!
6560 St Rt 605 in New Albany..

Thanks for checking in!

New Prom Pictures Added

Please scroll down to see the new prom pictures added.

If anyone has prom pictures and would like to email them to me it would be greatly appreciated.

Please email them to hondale@sbcglobal.net

Include Prom Pictures in the subject line.

Thank you!