A note from the secretary

After many discussions today we have decided to definately add a forth round of chemo to Eden's agenda. She will begin round four on July 10 (hopefully nothing will delay this date), we don't want to give the cancer a chance to grow.

So here's what her schedule looks like at this point:

July 5 - 7: admit to Columbus Children's for stem cell harvest
July 10 - 14: Round 4 of chemo
July 20 - 28: Scans to get a baseline for MIBG treatment
Aug 4 - 6: Hem/Onc Camp with Columbus Children's
Aug 7 - 12: MIBG treatment in Philadelphia
Sept 11ish: Scans to see how well MIBG has worked (in Columbus), along with possible second MIBG treatment in Philadelphia after scans.

I think it's safe to say that Eden is a VERY busy young lady. The schedule above is just her medical dates, she'll have many social events on her calendar, as well. It's so hard to keep her calendar straight, especially when so much is subjective, based on her counts. Thank goodness for MS Outlook, Palm Pilots, conference calls and email!

Now we have to figure out how to get the adults where they need to be and when they need to be there. The secretary needs a secretary.

Sick? Who's Sick?

Well what you see is what you get. This was our weekend. Swimming, eating, Swimming some more. Sorry some of the pics are a little blurry but you get the idea. I have two daredevil on my hands. Eden is swimming so well and she just wont stop! I had to force her to take 5 min breaks every hour or so and drink water.

As you can see we had Stef join us for the weekend and she will have the most unique tan ever. No Aunt will ever compare to Aunt CeCe and Eden is very aware of that fact. They had a play date Friday night and I am sure there was some serious Tea party events going on. Nancy (works with CeCe) gave Eden the most wonderful gift last week of a Picnic Basket with a Tea set inside.

Eden is such a big girl now. She refused to use nummie cream on her leg for shots now. "it doesn't hurt Mom" But this morning as we were heading to the hospital for clinic she stated that she would still need nummie cream on her port site when getting accessed. She said that would be required until she is 10 which made my blood run cold for a min. I am not sure if it was the thought of....Will she make it to see 10 (please God) or was it the idea of her needing her port for the next 4+ years.

Clinic went well today. I just spoke with Shelly and Eden's platelets were at 20 so she got a fill up. No more shots were needed as her white count is going well so she will have the week off and then start again on Friday or Sat and it will go to 2 shots a day for her Harvest on Wed. A forth round of Chemo is scheduled but only if they don't get enough Stem Cells and would need to do it again but after a conversation between Dr. Nick and Shelly today I think we will go ahead and do the 4th round regardless. We all feel a little uncomfortable with doing nothing between her chemo two weeks ago and Aug 8th. That is just giving the Cancer to much time to get out of control. She handles the Chemo very well and its in her best interest to go ahead with it.

Please keep Christi Thomas and Family in your prayers that her counts start to recover to make her eligible for new treatments.

A fish called Eden

The pictures above are Eden swimming, diving and doing a flip under water and dancing from left to right Eden, Lil, Allie, Madi and Abby at Balletmet.

Eden went from always having floaties on to not using them AT ALL overnight. She can now swim from side to side of the pool underwater with no help, she can do front and back flips under water and she can jump off the diving board and swim to the ladder with no help. Her new found independence does however keep me on my toes. It only takes one sec for me to turn my head and her to go under. We have huge amount of respect for the water and what it is capable of and we instill that in Riley and Eden often.

Eden had clinic on Monday and her counts were fine and she will go back on Thursday to check them again. It is very hard to predict if she will need blood or platelets as I haven't seen any bruising yet and she seems to have plenty of energy. She did however sleep until 12:30 today and didn't even wake up when I gave her her shot. That tells me that her body is needing more rest but it doesn't always mean she will need blood. She is eating very well, in fact I would bet she eats way more then Riley does on a daily basis. Its very nice to see a little meat on her arms and legs and yes she has a tushy again!!

Thanks as always for checking on the princess.

Round Three is in the can

Sorry for the lack of updates, but I have to tell you that taking care of a six-year old while she is going through chemo is a busy job. It's especially busy if the six year old is Eden Adams.

Eden doesn't have a slow-down button. She goes full-steam ahead in EVERY thing that she does and sometimes that is not good for her health and well-being. It is a tough job to get her to be down when she needs to be down, to be still when she needs to be still. I get very tired and it lasts for days. The only repreive that I get is the occasional time that I can convince her to take a nap. Those don't come very often, though and so I soldier through as best I can.

The week finished up on a fun note. On Friday at clinic, Eden had two of her fellow neuroblastoma fighting friends in the chairs to her right. Codey St John and Jaret Cerino were both there having transfusions. We (the grown-ups) found a floding table and set in up in front of the chairs and pulled up the kids for a few rousing games of cards. They had a great time playing together and it was nice to see them acting normal for a while.

Eden and I have a lot of sign language to learn to be able to communicate well with Jaret, but we are trying. He's a real hoot to hang out with, he always has some way to get my attention. This week it was with rasberry sounds. He's very competitive, too. He gave Eden a run for her money during those card games.

Our buddy, Shawn Reynolds and her folks were there Friday, as well. Shawn has been having radiation treatments and some sort of oral chemo for the last few weeks. He has shown some very positive response so far. They invited us to come to a benefit for Shawn on Saturday in Chillecothe (sorry, I can't spell that name). Three country singers from Nashville, auction items, food and fun, I called Rourke and he thought it sounded like fun so I got directions to the place.

Oh, wait: back to the treatment stuff. Sorry, I do get side-tracked very easily.

Eden has finished round three. We have clinic appointments on Monday and Thursday mornings for the next two weeks. They will check her counts and determine if she needs a transfusion of any sort.

On July 5, Eden will be admitted for her stem cell harvest. We hope that she will be able to push millions of stem cells out into her bloodstream for capture.

This week the kids will be with their mom starting after the clinic visit tomorrow.

Riley had a great weekend at the houseboat with Momma Hope, Poopa Ron and Aunt Hunny. They went out into a cove and got to really enjoy being at the lake. Riley came home in fine spirits.

Saturday we headed south to Shawn's benefit. Guess who was the first person that Eden saw when she walked in? MICAH SKEENS! Eden and Micah are close pals, but we didn't know that Micah was going to be there. It was a real nice surprise to find that Micah was a cousin to one of the singers that donated his time to play at the benefit, Scott Collier. Needless to say, Micah swooped Eden into her arms and we mostly justed followed them around taking pictures.

Suffice it to say that as usual, the PRINCESS was in the house. Somehow Eden ended up on stage singing with the guys. She sang, "Chasing that Neon Rainbow" and "Follow Me". The singers were amazing about allowing her to be in the spotlight and I believe that she signed autographs for them later in the evening.

Shawn wasn't feeling very well, so he headed home with his nanny and poppy. They took his brand new yellow Hummer with them, too. Poor Shawn just looked worn out. It was a hot day and the place was PACKED! He stayed for a good long time, though and he ate almost constantly the whole time he was there. He really seems to be doing great for all of the treatment and side effects that he has dealt with lately. He's the bravest boy that I know.

Not that I am any kind of authority, but if you ever get the change, you need to check these guys out. They were all amazing singers and had much love for our little warriors.

John Stone: http://www.johnwstone.com/

Scott Collier: http://www.scottcolliermusic.com/

Matt Mason: http://www.myspace.com/mattmasonmusic

Eden informed us on the way home last night that she planned to marry John Stone. I hope that his wife won't mind.

Daddy and Eden went for a Father's Day motorcycle ride. They had a nice father/daughter bonding time and I slept for three hours. I just cannot get enough sleep. After I finally woke up we all headed to see Cars. What a funny movie. It scored a bunch of belly laughs from all of us. Rodger has seen it three times and still finds new things to laugh at.

After the movie we picked Riley up from Momma Hope and headed home. All the kiddies headed to bed and I decided to update this before I got yelled at by my mom.

Happy Fathers Day, Dad. I love you!

Chemo round three update

It hasn't been a bad week, but not the greatest either.

For some reason our Monday did not go off without a hitch. We were hitched many times, but mostly it was just silly delays.

Tuesday was another long day, as Eden needed a red blood cell transfusion. We arrived around 9 AM and left at 4:45 PM. The chemo didn't get started until noon and the transfusion didn't start until around 1:30. I cannot figure out why it took three hours to do NOTHING! Eden had a couple of nightmares Monday night and she had me up and down. We were both pretty tired and I was grouchy. We ended up taking a nap together in the infusion chair for a couple of hours. That helped a little, but I just don't know what takes so darn long to get started.

Wednesday, today, was another story altogether. We got there at nine, and started chemo preparations before ten AM. We left around 1 PM. THAT's how the outpatient chemo is supposed to work. Of course the reason that today flowed perfectly was because I had invited Miss Diddle and Mrs. Zorn to come to the hospital to play with Eden because we have had such long days. I think they were sort of disappointed that it went so quickly.

We have the schedule for Eden's stem cell harvest. She will be admitted on July 5, have the catheter placed into the femoral vein in her groin/leg area and will begin the harvesting process the same day. She is scheduled to harvest for three days. She will be inpatient for the whole harvest time as the catheter is a big one and is kept in place for the whole time. Eden will have to be very sedate for the time that the catheter is in her body. She will need to be still and not be running or maybe even walking! I think it's gonna be a very difficult inpatient stay for her. She is a social butterfly and NEEDS to run around J5 spreading her "Princess-y" cheer to everyone.
So she has two more days of this round of chemo. She has handled it very well, as she has in the past. What a little trooper. She's going to be so disappointed that she won't have visitors tomorrow or Friday at the clinic. She's stuck with just me, five nurses, other patients, lots of activities and she'll still tell me that she's BORED! Any ideas for entertainment while stuck in a chair for three hours or more (without glitter, glue, sequins or much mess) is most welcome!

More Pics

Eden and Friends on Grad day Eden, Riley and Stef at Game


Krista Diddle acting silly on Grad day.


Eden and Riley at the Reds/Cubs game

L
Eden and Friends waiting to Graduate.


Eden had yet another busy weekend. Of course Friday she graduated from Kindergarten and then Friday night we headed to Cincy for the Reds/Cubs game. Eden was so funny. In between mouths full of food she would yell, scream and heckle the ball players and after the game we stuck around for fireworks. We didn't make it back to Columbus until about 1 in the morning. Sat morning we woke to rainy, cold weather for Lil's Birthday pool party.. Very sad but we had fun anyway inside. After the party Eden headed to Aunt Pam and Uncle Bill's to go with Mick to see Dora who was appearing at the local Drug Mart ( will add pics once I get them scanned) When I showed up to get Eden she and Mick had a plan......... "Mommy, Mommy Can I spend the night with Mick?" "Lisa, Lisa Can Eden spend the night with me?" How do you say no to that?? So Eden had a fun sleep over with Mick and by Sunday was just a little grouchy.. Sunday was a lazy day of playing with the motorized boat in the pool and building a fire for hotdogs and marshmallows with the family.

Eden started Chemo this morning and will run all week... Please say a prayer for non eventful week.

Thanks for checking in on the social princess

She's a first grader now

What a very special day for Eden; she is officially a kindergarten graduate! Thanks to God for allowing this day to come.

After the ceremony there was a reception in Miss Diddle's classroom, with snacks and goodbyes all around. Of course, Eden didn't need a tearful goodbye: Miss DIddle and Mrs. Zorn will be coming to hang out with her at the hospital next week and Mrs. Zorn is running a tutoring program that Eden will be involved with this summer.

Thanks for checking in on our girl. Eden, Riley, Mommy and Andy are heading to a Cincinnati Reds game tonight. Woo Hoo! Go REDS!

Chemo starts Monday on an outpatient basis for five days. Keep praying!

Alex's Lemonade Stand

If you live close to either of these locations, please stop by and have a glass of Lemonade. Obviously this is a cause near and dear to our hearts and so many other children fighting every day for their lives. HAVE A GLASS OF LEMONADE AND HELP SAVE LIVES!!

If you cant make it there, please stop by the website and make an online donation.

http://www.firstgiving.com/jenniferlynn714

June 9th at the Fremont Wal*Mart from 11:00 - 3:00
June 10th at the Norwalk Wal*Mart from 11:00 - 3:00

Thank you Jennifer!

The promised photos

I promised photos and here they are! Enjoy.

In order from top left:
Daddy and Eden arriving in style at the Gatsby's Bike Night/Cruise-In/Car Show
Eden and Felicia playing with Fairy Dust
Eden's photo of herself with Dr. Jason (who was being silly as usual)
Eden posing her in dance recital costume by a fountain

Have Platelets, Will Travel

Yes, Yes she is only traveling from one driveway to the other but in the world of a Cancer Kid that is not always possible. When Edens platelets are low getting in/on anything with less then 4 wheels is a big no no. So last night we took full advantage of the nice weather and the good counts. As you can see she lets nothing hold her down!

I witnessed the most amusing sight last night looking out my back door. Eden was ever so gently climbing up on canes back and holding on for dear life while Cane did his best to buck her. (Trust me there was no cruelty to animals here only self inflicted cruelty to Eden) Cane at 5 months old is up around 80lbs and our little Eden at maybe 43lbs was thrown around by Cane like a rag doll but she loved every minute of it.

Just wanted to share a very good evening!!

Quick update

Eden had a tremendous weekend. She had three big events that she attended.

Her very first ever dance recital! She hadn't been to dance class in almost two months and she still danced like an angel!

The annual Gatsby's Bike Night/Cruise In and Car Show (partially to benefit Eden and partially to benefit Hospice). She got to ride in on the back of Daddy's motorcycle wearing her pink motorcycle helmet.

The Children's Miracle Network Telethon, Sunday morning at 9 AM. She was presented a medal on television.

Our weekend was so full of goodness and light that it was very exhausting: does THAT make any sense at all? Rourke, Riley, Eden and I all took a nap this afternoon FOR THREE HOURS! Actually, Riley slept for four hours and only woke up because Eden decided that he needed to eat dinner with the rest of us.

Eden is spending the night with Momma Hope tonight and will be ready for a full day of school tomorrow.

Eden has a clinic visit scheduled for Wednesday morning. It will be a plain old normal check up and blood counts will be drawn. We hope that all of her counts are high enough to schedule her chemo to start next Monday, June 12.

We hope that this will be a nice quiet week of school for our princess.

I plan to add pictures from her big weekend soon, but I make no promises to HOW soon it will be.

Thanks for checking in on our girly-girl.

Allie Neff

Please Pray for Allie's Family as the grieve the loss of their sweet angel. Allie was diagnosed about 3 weeks before Eden at Columbus children and we got to know her and her family during our time at the hospital during treatment. Below is a small clip from her website.

At approximately 8:15 pm CDT this evening(May 30, 2006), Allie went home to be with Jesus in paradise. She is no longer suffering and she is at rest. There will be no more tears, pain, or sadness in Allie's life. Revelation 21:4 says, "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."

We will never forget you sweet Allie!!