A New Day!

Eden is feeling great! She had a wonderful weekend filled with friends, family and shoe shopping and more Birthday Celebrations... We had clinic this morning and all of her counts were fine so no transfusions and she can stop her shots for White Count....Go Eden!! Her Liver Enzymes were a bit higher which is of some concern. It was decided late last week that she would not have surgery to remove her Gull Bladder because it would cause a delay for MiBG. Sometimes you have to pick your poison... Literally! She is on Medication for the Gull Bladder and a strict low fat diet. We just need to keep things calm until she gets through MiBG and Stem Cell Rescue and her counts recover... is that really asking to much?? LOL She made it to school for most of today and should make it for Tuesday and Wed. She has labs and a CT Scan scheduled for Thursday to see if her Organs still look enlarged. She and Riley are going to school on Friday but leaving early so we can Head to MI for special event for someone very close to us and then Eden and I are flying to Philly from Detroit on Sunday.

I know we told you last week that her MiBG looked much better and we found out on Friday that her Bone Marrow is still clean. She is going into MiBG next week with about the same amount of NB as she had last Aug when she did it. We are very pleased that the Chemo is still working for her but that will only last so long. A cure must be found!! Please don't forget about the Yard Sale Thursday , Friday, Sat and Sun at 6560 St Rt 605 in New Albany.

Black Tie Affair ~ Prom 2007

The long awaited Prom Picture.

MiBG Scan

So here is what you are looking at. The top Scan is from yesterday and the bottom is from Early March(the last scan) The one from yesterday is an improvement! I cant say for sure how much of an improvement but I think it looks much better. You can still see some of the spots but they are much lighter. Prayer and Chemo are a miraculous thing. You will see very bright spots in her Jaw and in her Belly area but those are normal uptake and not necessarily NB.

On the Down side... We were informed this morning that Surgery feels Eden needs her Gull Bladder out. For her this is much more serious then with most people because of her White Count. Infection is a concern with any surgery but with a child who has a very compromised immune system the bar is raised! Dr. Yeager is going to speak with Dr. Mosse to weigh the risks and set a plan. If we do this next week her white count will be better but still far from great and there is concern about going into MiBG right after surgery but if we wait and it should become more urgent while going through MiBG Therapy the complications only get worse. We will keep you updated on the plan.

We do know that we are heading to Philly on the 7th and she will be injected on the 8th so i would guess she will be discharged on the 11th.

We are expecting to be discharged today!!! WOOOOHOOOO I want to thank everyone for all of the wonderful and funny cards. She has 40 sitting here that she loves to go though and look at time and time again!

Inpatient

Eden is in fact inpatient, for how long we don't know. She really seems much much better today! she has not had fever since yesterday morning and she is up and moving again. We did have a small scare this morning when i showed up at the hospital the nurse had just come in and told Dad that she was NPO and that a surgery consult was on their way..... ??????????? It took me getting a little loud to find out what the *^&% was going on. Turns out that when she had her CT scan last night they had not looked at it until this morning and her Liver, pancreas, gull bladder area was enlarged.

It seems an Intern may have received these results first and put the orders in without giving us a heads up as to what was going on. I am not at all upset because i know they are learning but it was a very tense 45 min up on J5 and few people may have been on the receiving end of my "concern" ..lol Fortunately they are very good at understanding the parents frustration at times. I finally spoke with Dr. Yeager and he feels her blood levels do not indicate a major problem so she will just be watched closely to be sure everything goes back to normal. the swelling could have been from meds or infection or any number of things. Our biggest concern is that we don't so anything to irritate things further and prevent her from going to Philly for MiBG Therapy. If you would like to send her a card here is the link:She is on J5 room 14.

Again sorry we still haven't been able to get the airing of the prom up. we are trying to extract it from my DVR.....

Sorry for the Delay

I'm sorry it has taken so long to update about the Prom and her Birthday. Eden ended up being pretty sick Friday night.. I believe she had/has a sinus infection on top of very very low counts. She refused to miss the night though and I couldn't find it in my heart to tell her she couldn't go. So we pushed through and she made it through the most important parts. Everyone there was so happy to see her and she looked beautiful as did everyone there.. They had a special presentation where she was crowned Prom Princess and she received a standing ovation. It was so very special and we feel so lucky to have been a part of it. These seniors were more then willing to share their special night with Eden and it touched my heart so deeply.

We had to leave right after the little ceremony and head home. she fell right to sleep and slept through the night. She seemed to feel a little better in the morning but not much and of course being her birthday and all i felt so bad for her. She pretty much laid around all day sat and Sunday so maybe we will just pretend that next sat is her birthday and start all over...... lol

I know everyone is clamoring for pictures and i promise Rourke will get them up soon. We are also trying to find a way to put up the news broadcasts for everyone. Unfortunately shortly after we arrived home on Friday night i received a call from the Hospital that my Father had been in an accident so my focus for the weekend was him and Eden. He has some fractured Ribs and lots of cuts and bruises but was released from the hospital on Sat and pushing through the pain. Eden is not feeling better but maybe worse this morning so she and daddy are on their way to clinic where she will probably be admitted for a few days. I will keep you updated as i know more.

Thanks for checking in.

The Big 7

HAPPY BIRTHDAY SWEET GIRL!!!

She came into this world 7 years ago today at 3:38 pm causing trouble and not much has changed. She was the most Gorgeous baby i have ever seen.. Dark black hair and great color to her skin and so tiny even at 8lb 9oz. I also knew she would be my wild child and i could not have been more right. Eden you will always own a piece of my soul!

It has been a very busy few days and Rourke or I one will update more on the Prom later today or tomorrow.

By the way

I guess we forgot to mention that Eden's date for Senior Prom is her stepbrother, Rodger. He's a senior at New Albany and felt it was important for her to be there, Along with the Cheerleaders and Kaylee and the rest of the class. Thank you to everyone involved.

There is a rumor that there will be a special presentation by the Seniors to Eden.

In regard to the counter on the blog, if you double click on it you can view all of the cool options there, too.

All is well in the world of Eden Today. She went to Clinic on Tuesday to get Red Blood and was able to go to school all day today and should be there all day tomorrow.

I have many events to cover today so hang in there with me.

First. SATURDAY April 21, 2007 As far as Eden is concerned it should be a National Holiday. She will be the big 7. (There have been many times over the last 3 years when I wasn’t sure we would ever see this day.) Eden is so excited she has now gone from counting down the months to counting down the weeks to counting down the days that we are now counting down the hours. Please join me in prayer that she sees 70 more.

Second. I need to thank all of the wonderful staff and students at New Albany High School for being so kind and caring to our sweet Eden. This Friday she will be attending her first Senior Prom. She could not be more excited about it either. She has her dress and shoes and Mama Hope has made her a shawl and we have some special bling for her little head. These kids are Extraordinary in there efforts to support Eden and share a little of their night with her.

Third. We are having the third annual Garage Sale to benefit Eden. It will be held on May 4th and 5th from 9 to 5 and the 6th from 11 to 3. It will be at Hope Adams House at 6560 St. RT 605 in New Albany. If you have items you would like to donate you are welcome to email Rourke or myself or Call Hope at 614-855-1050. There will be many new items with tags still on them and most items will not be marked with a price and will be sold for Donations.

Forth. The Radiothon is back and Eden has been asked to be apart of it once again. It is held in the lobby of Children’s Hospital for 4 days to raise money for Children’s. Tune in to hear her on Friday morning between 8 and 9 am on one of the following stations. Magic 98.9, Power 107.5 and Joy 106.3.

And finally. I have learned to play with the counter on Eden’s blog and have learned some very interesting things. I wanted to share with you how many people have been to her site today as of 11am. 116 people from the following areas have been to her site this morning.
Massachusetts, Texas, California, New York, Oklahoma, Utah, Maine, Illinois, Alabama, Pennsylvania, N Carolina, New Jersey, Missouri, Florida, New Hampshire, Michigan, Canada, Denmark, District of Columbia, Spain, United Kingdom, Poland, Italy, Australia and China and most cities in Ohio. I would like for each one of you to know that your support has been a great influence on Eden’s well being and we couldn’t do this without you!

Chemo Done

Today was the last day of Chemo! WoooHooo.... She has done amazing with it as you can tell from the pictures above. Two are from this morning at Clinic while she was doing what Eden does best. EAT! Second set of pictures are of Riley and Eden cruising in her pink Corvette. The Hat was a very special gift received today from Carol Taylor-Gauthier. We have emailed back and forth a few times over the last few weeks and she wanted to make and send Eden a hat or two and low and behold today 3 amazing hats showed up. The one she has on is her Favorite.. it is the softest thing I have ever felt and Eden loves how it feels on her bald little head. I will try to get more up close pictures of all three hats if i can get her to slow down a little. Don't be surprised to see pictures of her in the hats while in bed asleep.. That may be the only way...lol Please Check out Carol's hats at http://stores.ebay.com/upfront . Thank you so much for your generosity Carol!!

Eden's Red Blood is already low or still low so she will have to head back in the morning for a Transfusion and then to school. She will go back on Thursday for counts again and then next week we will start Scans. From what i can gather we will head to Philly the first week in May.

Chemo Day 1

Eden completed her first day of her Topotecan and Cytoxin, She is still running Potassium chloride and will continue throughout the night!. She has had an IV dose of Mesna and Zofran to get things started and the another dose of Mesna about 3 hour after her topo/cytox. I case your wondering the clear line from the black bag is connected to Eden's port. The activity that I'm about to show you I had to put a stop to of course. I'm having a little trouble keeping her down. I think that this explains how she's feeling! Can you believe this?

Heaven welcomes another angel...

We have lost another warrior to neuroblastoma: Kendall Jackson.
Here is his link: Kendall Jackson
Please leave a message in his guestbook. This happened very suddenly and the family didn't have time to prepare.
Eden's chemo has been pushed back to start on Friday. She needed a red blood transfusion to prepare for the start.

Slow Progress

I just spoke with Rourke who has been at clinic with Eden all morning and they have decided to wait until Thursday to start the chemo. Her red and white counts are fine, but her Platelets are only at 40,000. That tells us they are starting to hold their own and on their way up but not there just yet. Normally they would require them to be 75,000 but we are only looking for 50,000 to start.

She only received this chemo at 75% of what she got this time last year which tells me that her body is really having a hard time recovering from even small doses, which is to be expected. Her little body has been through so much treatment in the last 3 years that I am just grateful that she is tolerating it this well.

If we don’t find something that knocks the cancer down so it can’t get up for awhile we will slowly start to run out of options of drugs that she can tolerate and the Cancer won’t hesitate to take full advantage of our misfortune and treat her body like a play ground. I feel so strongly that the cure is out there but so helpless that I can’t do anything to find it.

I know there must be a reason that she has to go through all of this but Lord Help me, I just don’t see it!

Please keep penelope in your prayers, she is only 4 years old and such an amazing spirit. http://www.caringbridge.org/ny/penelope/.

How do I express how unfair I think this is without sounding ungrateful for what we have?

Wonderful Easter

Eden is officially bald again! By Thursday evening she has pulled out most of the hair on the top and front of her head but the rest wasn't ready just yet so she asked Andy to shave it so she wouldn't look like a little old man. lol She is completely fine with and had no hesitation about going out in public bald again. Friday night we headed to Dave and Busters with CeCe to celebrate Riley's birthday once again and as always had a blast playing games and eating. Eden was trying to get this stuffed rabbit out of the claw game and almost had it and lost it.. about 10 minutes later a man found us playing air hockey and handed Eden the stuffed rabbit. He was standing behind her and saw her trying to get it. His kindness almost made me cry. An hour later another man walked up and handed her a $10 game card for no reason. Its amazing the world we get to see having a sick child and i wish that more people were able to see such kindness without the tragedy that goes with it. Just as we were about to leave, Eden was getting her picture taken in one of those booths and she fell backwards off of the stool and onto the floor. She was complaining about her belly hurting pretty bad and because her platelets that day had been 23 i felt a trip to the ER was necessary. I know it wouldn't take much for internal bleeding with platelets that low. We dropped Riley off at home and me, Eden and CeCe headed for Children's. They did an ultra sound and X-rays. It was a very long night but worth it for peace of mind knowing she was OK.

She spent most of Sat evening over at Uncle Bill and Aunt Pam's playing with Mick and coloring Easter eggs and drawing pictures. When she came home she and i made a bunny cake for Sunday Dinner with my family and we had a blast. The Bunny was covered with shredded coconut and she was eating as much as she was putting on the cake..

We got up Sunday and went to Church for a wonderful Easter service and then headed to CeCe's for breakfast and to find Easter Baskets. The kids loved finding them and all the good candy that went with it. they also each got 2 blue jackets Bobble heads. Papa Jim had also dropped of Easter baskets for them and Riley's had a race track in it and he played with that for hours with everyone he could rope in. Our very dear friend Debbie (who has been working non stop on projects for Eden) sent both kids little Easter baskets that the got on Friday. they both get such a kick out of getting mail.

My Brother is going to send me the pics he took of the kids hunting Easter eggs yesterday and i will get them up..


Daddy took Eden to clinic this morning and her counts are still a little shy of being able to start her next round of chemo so she is there now with Mama Hope getting blood and we are keeping our fingers crossed that she can start tomorrow. I will keep you updated as I know more.

HAPPY BIRTHDAY RILEY

HAPPY BIRTHDAY RILEY!! YOU ARE AN OFFICIAL TEENAGER NOW. LORD HELP US ALL!

Riley, my sensitive son. An old soul. So much to teach. My son Intelligent, quick witted, cheeky too. At times I will dispare, what to do. My son. My son. Whom makes my heart burst with joy. My son, my only boy. Inquisitive looks, lust for life. My son.This little man of mine, could not be more precious were he made of gold. My son I steal into his room at night, to watch him sleep. Lent to me by god. Mine for a while to keep. My son.


Born April 5th 1994 at 6:37 pm weighing in at 9lb 14oz.Two and a half weeks late (and has been late ever since) He was such a good baby. I remember calling the Dr. because i thought something was wrong with him because he never cried. He was such a beautiful baby and so perfect. I didn't get a chance to jump on yesterday to wish Mama Hope and Aunt Hunny a happy birthday but the kids did get to call and sing to Mama Hope. Happy Birthday One and All!!!

Riley did get his cast off yesterday.....wooohoooo However the pain is much worse now. Because the muscles have not been used in so long he is having a hard time moving his leg. All in good time sweet Riley.

Eden is doing fine. She did get blood yesterday as she was a little low. Her platelets were up to 30,000 (not good but better) so they are going to hold off until Friday to see where she is. She is feeling great with tons of energy and its so hard to keep her still and i hate so much to continue to remind her that she still has low platelets because i know she is just trying to be a normal kid. Eden still has all of her hair and i had a chance to speak with Dr. Nick yesterday and he said it may hang in there (pardon the pun) because she only got 75% of the chemo that she was given this time last year. Eden was very upset the other morning while i was brushing her hair and she noticed it had not yet started to fall out. She asked me if this means the chemo is not working. It truly breaks my heart that she worries about such things and amazes me at the same time. As we know that is not at all the case because her counts are falling falling falling and even if they were not it would not be any indication of how the chemo was working on the cancer. While sitting in Clinic on Monday discussing the next few weeks with Nick i mentioned that Edens last Bone Marrow aspiration was done on the front of her hips in Philly and that Rourke thought it was a faster healing time for her and she piped in and said no way i want it on my back.. So Dr. Nick told her it didn't need to be decided now and could be done right up to the time she is wheeled in for the procedure. In my mind i felt like i was in the middle of a very sick game of "THINGS YOUR SIX YEAR OLD SHOULD NEVER HAVE TO DECIDE" Things nobody should ever have to decide.

Afternoon update: I may have spoke to soon. Eden is now pulling her hair out by the handful...... She is having fun but Mommy's belly is doing flips! The hair will probably be gone by nightfall.

Good Week

As you can see we made the most of our weekend! Sorry it has been so long for an update. Eden spent last week with Daddy and all was well. She made it to school each day with no problems except Thursday she had to go to clinic and needed red Blood. Friday night she was able to spend the night with Micah and she had a wonderful time. Thanks Micah! Sat night we headed to the Buckeye Hall of Fame Cafe and met up with the crew from Mr. Tire of Columbus. They were having a fund raiser for Breast Cancer and you could pay to put a pie into the Owner Clyde's face. As you can see Eden loved doing that. (other pics are Eden with Mr. Buckeye, Eden with Kelly, Eden with Ella(breast Cancer survivor) Kelly is a Co-worker of mine and a huge Eden fan and Eden loves her so much. Thanks Kelly for the invite. Everyone there made little Miss Eden feel like a star. Monday Morning we headed to Clinic and we could tell that Eden would need platelets. Poor little thing looks like she has been beaten! Her Platelets where 8,000.... They should be at least 150,000, so no biking riding for her. She spent the after noon with her friends Ally and Lil and played her little heart out and headed home to ride in her barbie car. Its the only thing i feel save in letting her ride on right now. She will head back to Clinic tomorrow for probably more platelets and Riley has his appointment to see how his ankle is doing and with any luck he will get his cast off or at least get a smaller one.