< Princess Eden Adams: May 2006

Princess Eden Adams

A place learn about Eden Adams and her fight against Neuroblastoma.

Wednesday, May 31, 2006

Build-A-Bear and Bubble Day

Whew! What an exciting couple of days. On Monday, Memorial Day, there was no school, so Mrs. Zorn and I took Eden out for girls day! First, we had lunch at Johnny Rockets (Mrs. Zorn really wanted a milkshake!!). The food was great AND we got to see the waiters and waitresses dance! Eden thought that was cool! Then it was off to Build-a-Bear, where none of us actually built a bear. Eden built a dog, named Emily Cada Adams, and dressed her in a bathing suit, complete with towel, suntan lotion, and umbrella. Mrs. Zorn made a puppy named Sammy and I made a froggie and then dressed him in a Steeler outfit! Good times! p.s. Mom, Dad, and Shelly, we're not sure how you do it because Mrs. Zorn and I were EXHAUSTED at the end of our girls day out!
Today at school was Kindergarten Bubble Day and Eden was here for the whole thing! Yippee! Bubble Day consisted of several different bubble stations set up in the gym and outside where the kids can experiment with bubbles and even stand in a huge bubble, get their face painted, eat snack, make crafts, and pretty much have a rollicking good time! We were so glad Eden could be with her class for this special day!

Tuesday, May 30, 2006

A lot of information!


Eden had an amazing weekend!! She swam Sat and Sunday until I was afraid she might grow gills. She was able to spend all of Sunday with two of her favorite people Stephanie and Stefanie. Life was good! On Monday she went with her two favorite teachers to Easton and they had lunch and went to Build a Bear and ran into Coach Hicks. How can one little princess be blessed with so many wonderfulspiritss in her life?? She was so excited and exhausted when she got home that she had to take a 3 hour nap and woke refreshed and ready to go. She had clinic this morning and she and Shelly are now hanging out waiting for platelets as they are still falling. We heard that her cultures from Sat were Negative just as we suspected and Shelly asked them to draw them once more this morning just to be double sure.

Rourke and I spoke with Dr. Yeager a few times over the weekend and thought that Eden would be heading to Philly next Monday for MiBG therapy based on those conversations but today we had a Concall with Dr. Mosse from CHOP and voiced our concerns about the amount of Stem Cells she has in storage and were able to change our strategy some. Here is the dilemma: We are seeing good response to the two rounds of chemo Eden has done but there is still evidence of Cancer Cells in her body based on the MiBG done last week. So, Ideally we would go straight to MiBG Therapy to try and get her back to NED, BUT we have learned that Eden only has enough Stem Cells in Storage for one Stem Cell Rescue and its highly probable that she would need them after this first MiBG treatment and we hate the idea of abandoning any treatments in the future that would require backup Stem Cells. As Eden goes further and further with treatments it would be harder and harder to try and collect Stem Cells from her body so we feel it's important to do that now even if it means delaying the MiBG Therapy for a month or so. Dr. Mosse is in agreement with us and feels this is a good choice. She will instead do two more rounds of the current Chemo and a Stem Cell harvest between them. The down side?? Relapsed Neuroblastoma tends to react well to therapies it hasn't seen before (such as the Chemo she is on now) but it is usually very short lived and we are taking a chance that the Chemo will stop working and the Cancer will start to gain strength in the meantime. The other down side is the Stem Cell Harvest is very hard on her. She is given a lot of drugs to boost her Stem Cells and she has to have a very rigid catheter placed near her groin for the collection for as many days as it takes to collect enough Cells. (Up to 4 days) The Catheter will stay in 24/7 and she cannot move her leg so she is stuck in bed on top of being in pain from the Catheter.

I know this all sounds very harsh but this is her life and this is our life and we have to make very hard decisions and we do everything we can to make it up to her in between. She is such a tough little girl and I have no doubt she will come through this with the spirit she has made it through everything else.

Please say an extra prayer for another NB fighter Christi Thomas. She has just finished a very Dangerous experimental treatment in hopes of fighting back the raging Cancer taking over her little body. Her Stem Cells have been given back to her and they are waiting on pins and needles for it to engraft and restart her little body. Christi you are in our prayers!!

Saturday, May 27, 2006

Decisions, Decisions

We spoke with Dr. Mandy yesterday (wont even attempt to spell her last name) and it is confirmed that Eden’s Bone Marrow is clean and they have seem more then a 50% reduction in Cancer Cells in her body. It seems that Dr. Mandy will be taking over Eden’s care for awhile and we couldn’t be happier about it. She was Eden’s BMT Doctor and we are very comfortable with her. Eden had labs on Friday and we asked them to do a Blood Culture (just for good measure) and her counts are slowly on their way up except her Platelets which continue to drop but not at the fast rate as before. She did get a platelet transfusion to hold her through the long weekend. This morning we woke and headed for CeCe’s pool as fast as our legs would take us and planted ourselves there for the day until a dreaded call about 4:30 that Eden’s blood cultures were growing something. So, out of the pool we went to the hospital. I was expecting more blood cultures to be run and IV antibiotics to be given considering she has had no fever and played like she had 10 kids energy today but to my surprise the wanted to admit her.

Now let me start by saying that we have allowed the professionals to call the shots over the last few years no matter how hard it was for us to do so at times but today I had to put my foot down. Although the Doctors would never admit this, sometimes a parent knows what’s best for their child and if I thought for one second that she was sick we would be inpatient right now! Eden gets fevers at the drop of a hat and if she truly had a bacterial infection she would have been spiking all day but as I felt her head 100 times today and nothing I believe there may have been a contamination somewhere down the line. Rourke and I talked on the phone and agreed So I asked them to draw another blood culture and give her antibiotics and let us come home and as unhappy as they were about it, they conceded but not before reminding me that I could be the cause of a serious even life threatening blood infection. It’s actually funny they should say that considering we feel like every move we make these days could cause her her life…. How sad it is that any parent should ever have to be in this position!

I am watching her very close for any signs of trouble at which we will be back at Children’s in a flash but for now I want her to be able to enjoy this weekend that she has looked forward to for SOO long. We would never put her health at risk in any way but will always look out for her quality of life.

Thursday, May 25, 2006

The wait is over (for now)

Results are back and we are pleased with the progress we are seeing. There was a good amount of reduction to the cancer from the Chemo!!! WOOOHOOOO. We received results back from the CT on Monday and the results from the MiBG today. There were a few tense moments yesterday as I watched on the screen the image of her body start to appear and no surprise I could still see the spot on her shoulder and couldn’t see anything in the groin area because her bladder was full so the whole area was lit up but I knew what was causing that. The scary part came when I saw her left hand light up…..WHAT IS THAT??????? Well after the first scan and then the 3D scan they had one of the techs wipe her hand off with an alcohol wipe and did one more scan and to our delight it was no longer lighting up. SHEWWWW! Let me explain. The MiBG is the best tool we have in searching for Neuroblastoma in her little body because the Dye injected in her 24 hours prior to the scan is created to look for Cells and attach to them and light up on the scan. There are some parts of the body that will always light because the are very prone to uptake by the dye (some of the organs and urine will always show up) and as I said her bladder was full of urine so it was lighting up like a flashlight in there and apparently she didn’t get her hands very clean while going potty and that is what caused her left hand to light up. I hope the beginning of this story didn’t scare anyone but I wanted to explain a little about how something so small can cause major chest pains for us. Eden’s Bone Marrow is showing Negative for any cells as where last time they saw 5% on one side. They did say that there were very few cells period because of her low counts. But we will assume that either it is gone from her bone marrow or has stayed the same.

All of her scans were fedexed to Philly today and we have made Philly aware that it’s on its way. You may see a gap in updates related to next steps as Dr. Yeager is on Paternity leave and we are not sure how communicates will happen with Philly. Obviously this is very frustrating for us but have no fear that we are on top of it and would never let Eden’s care suffer for any reason.

Wednesday, May 24, 2006

Scans done, the wait begins...

This photo is of Eden and her great friend, Jackie. Jackie works at Children's but is a patient of Momma Hope's from the dental office (that's how we met). We hunt down Jackie every chance that we get because Eden loves those hugs!

This week has been okay, not great but we've had worse.

Eden had her bone marrow aspirations on Monday morning. The surgery was almost cancelled because the folks in the new surgery center do not know that I do the hospital stuff and actually required a legal guardian to be there before they would even check Eden's vital signs. While we waited for Dad to arrive from Marysville, Eden and I went to the clinic to have her port accessed and to have her labs drawn. Thank goodness we did the red blood cell transfusion on Friday or she wouldn't have been able to have surgery at all. Thankfully Dr. Olshefski was running behind schedule, so he didn't even know how stressful that "legal guardian" scare was for me.

Anyone know an attorney that can write a limited power of attorney for a greatly reduced sum? I've been doing this stuff for Eden for two years, I think it's time to at least cover sedation, scheduled procedures like bone marrows and such. It would make it much easier for me to help Rourke and Lisa take care of Eden.

Eden didn't need transfusions on Monday, so she and Daddy headed home and we all took a big nappy-nap.

Tuesday Eden was able to attend a full day at school. I picked her up and we headed to Radiology at Children's for her MIBG injection. She got a great surprise when Volunteer Dave showed up to play with her. We finished up and I had promised her a trip to the "cool" playground across the street for the ER. Dave tagged along and played like a large version of a six-year old. I got to watch them have a ball. They came over to let me know that Eden's nose was bleeding and to get a tissue. I gave them a tissue and they went to play, while I called Faye, Eden's nurse practitioner. Our timing was lousy and the clinic and Day Hospital were closing for the day. Yep, you guessed it: we went to the ER.

Let's just say that for being the second best ER in the country, we were very unhappy with the way that Eden was treated in the OR. They could use a lesson in how to keep immune-suppressed children from contracting illnesses.

The triage nurse was great, although she did let Volunteer Dave's antics distract her a little. She didn't make us wait in the waiting room and got us into a room rather quickly, around 5:15- 5:30 PM.

It took them two hours to even draw her blood for a CBC and 24 hour cultures. The resident that I talked to treated me as if I had no idea of how things worked. She um'humed in all the right places and then we saw no one until 7 PM, can we say "Shift Change"? The nurse came in to draw blood and just as she headed out the door Rourke was coming in to find out why in the world we weren't transfusing yet. He had already been to J5 to see if anyone could help us and then found the ER attending to raise heck, too.

Stat blood counts only take an hour to come back from the lab. They didn't start a transfusion until after 10 PM. Rourke and Eden arrived home after 1 AM! She had to be back in to Radiology at 8 AM for her MIBG scan. He had to get up for work at 4:30 AM. Does this seem like good patient care to you? We are extremely unhappy.

Eden could have been exposed to NUMEROUS illnesses while in the ER and they made no effort to expedite her dismissal. All she needed was a platelet transfusion to ensure that she would be able to have the MIBG scan (sedation) done this morning and yet they dragged it out by hours.

Today the MIBG went very well. We have no results yet. I won't publish anything here until Eden's parents get real answers, not preliminaries.

Eden has no ability to fight infection right now. Her white blood cell count was 0.4 this morning. PLEASE keep your germs away from Eden: she tends to pass them right on to me!

She plans to attend school tomorrow, for the whole "half-day" that she attends. She's very excited to be able to go two times this week. She really misses her friends when she can't go to school.

Friday is another full day at the hospital. Hopefully Mom and Dad will have some test results back by then too.

Saturday, May 20, 2006

Whew. A busy week has ended.

The second round of chemo has finished without any dramatic events occuring. The Princess handled it all like a QUEEN and ended the week receiving a red blood transfusion, just to prepare for Monday's bone marrow aspirations. Better to be safe then sorry.

Next week her schedule is as follows:
Monday: Bone Marrow aspirations (in the OR at 8:30 AM) and bloodwork
Tuesday: MIBG injection (Neuclear Medicine at 3:15 PM) and hopefully a full day at school
Wednesday: MIBG scan and bloodwork (Neuclear Medicine at 8 AM)
Thursday: Hopefully a full day at school
Friday: Bloodwork (Outpatient clinic at 8:30 AM)

Starting today, Eden will receive daily injections to help her white blood cell count to bounce back quickly from the chemotherapy that she received each day of this week.

Who knows how the upcoming week might progress; but this is her tentative schedule.

Please be aware that Eden's counts have already begun to drop so please visit responsibly. If you are sniffily, ill or even just feeling a little under the weather, please call to visit with Eden. We love and appreciate all of you, but we must protect the Princess from illness. We know that you understand and will not be offended.

Thanks for checking on our girl, stay tuned for more updates on Princess Eden.

Thursday, May 18, 2006


Please Remember the Yard Sale this weekend in Grove City!! Friday and Sat from 9 to 5. We have had SO many people donate wonderful items and it is all looking for a home. Also we still have Tickets available for the Football signed by Jim Tressel and the winner will get their picture taken with Jim (at Jim's Convenience) W e would love to have you, so stop by and say hi! There is an Add in the Columbus Dispatch if you need the Address or send me an email. We have so many people to think for their help over the last few months and we plan to do just that Very soon. Thank you all and be sure to scroll down and see the Gangster Princess..

Wednesday, May 17, 2006

Round 2 update

Original title, huh folks? It's been a whirlwond of a week so far and it's only Wednesday!

The chemo so far has been right on track, no problems, but lots of worries. Eden still has a runny nose and is very "snuffily"; she is still suffering from a yeast infection-type thing in her nether regions, but the cream that was prescribed is helping a lot; she is not drinking as well as she should be...a pretty normal round of chemo, all in all.

The outpatient chemo is quite easy. I thought that it would be more work or harder or something strange. It's easy for me to do all of the maintenence. I'm still shocked and surprised. There is nothing scary or hard at all. In fact, I've done all of the same things before. Huh, experience is a good thing, I suppose. Check out the daily schedule below:

5:45 AM: Hook up IV fluids (no pump to fool with) while Eden is sleeping. Make coffee. Try to wake up.
6:30: Wake up boys to head to school, breakfast, hair, teeth, meds...etc. Drink lots of coffee.
7:20 AM: Boys gone. Eden eats breakfast with her IV fluids sitting on the table.
8 AM: Unhook the first bottle of IV Fluids and then hook another bottle to the line. Meds.
8:15 AM: Head for Children's
9:00 AM: Register in the Outpatient Clinic. Vitals, height and weight. Urine sample (she always misses! YUCK!).
10 AM: Start chemo. Watch TV and eat snacks.
12 Noon: Unhook from hospital equipment and start home IV fluids.
12:01 PM: RUN for the door.
2:00 PM: Push Mesna through line over five minute period.
2:05 PM: Push saline through line over ten minutes.
2:15 PM: Continue IV fluids until bottle is empty.
4:30 PM: Flush line with saline, then flush line with Heparin to keep blodd from clotting in the line.
4:35 PM: Continue with life as we know it.

I'm not sure how much easier it could be for us. I'm glad that we were given the chance to do this outpatient.

There are some cool things happening with Eden in the next few weeks. I'll keep it a surprise for now. Check back soon to hear about the fun stuff.

Don't forget to head to Grove City this Friday and Saturday for the continuation of the Garage Sale to support Eden. Email Lisa for more details. I am not going to publish addresses on the blog for safety's sake, but we'll be happy to fill you in on all of the details via email. We have a flyer that we can email, as well.

When I talked to Shawn's parents about his radiation treatment they were very positve. Dr. Bauer at OSU will be Shawn's doctor and they are very pleased with all that she had to say about Shawn and his case. Please continue to pray for Shawn and his family.

Time for meds, beds and the start of another wonderful day! Thanks for checking in on our girl.

(The picture above was costumed and staged by Riley, photo by me. He called it the Gangster Princess)

Monday, May 15, 2006

Round 2

Eden started her day at 6 :15 AM, preparing for the first day of her second round of chemo. She had to drinks lots of fluids to get her bladder and kidneys ready for the harsh chemo meds.

The day was rough, but it had nothing to do with the chemo. Eden and I had to return to our house twice before we could even leave for the clinic. The first return was for my phone, the second return to put numbing cream over her port.

Eden and I both had major cases of "dropsy" today. We dropped books, crayons, sweaters, more books, hot chocolate and white chocolate mocha on our shirts, she peed on my hand while we were getting a urine specimen; the day just continued in the same manner. It was rough but like I said, not chemo related.

Her day at clinic went off without a hitch, medically. She got all of her stuff done and we left the hospital at 4:30. Our start to the clinic visist was 8, so it really was a long day. She remained good-natured through it all and even gave David a cup of oranges for doing a good job with his pokey.

Mommy stopped in at 12:30ish to sneak a kiss and to bring Riley's bookbag to me. She didn't have a great start to her day, either.

Eden emptied the snack bag before lunch, so I'll have to pack a little heavier for tomorrow. We hope to only be there for four hours or less, so maybe I won't need a wagon to haul in her food.

Our good friends, the Reynolds family had another "slap in the face" kind of day. Little Shawn has progressed on the most recent chemo that they tried, so he will start radiation at The James at OSU soon, hopefully on Wednesday. The family is really taking this hard and rightly so; please pray for Shawn and his parents, Tracey and Pete. They need so much support right now, there is a great cance that radiation will cause brain damage, but it is their only option at this point. I wish I could do more then by coincidence happen to be near them when they get bad news. All I can do is hold them and cry with them. I feel so helpless. I felt just as helpless when Eden asked me why I was hugging Shawn's daddy and why he was crying. How does one have the cancer progression discussion with a six year old who is currently fighting cancer? I don;t want to scare her and give her more nightmares.

Speaking of nightmares, Eden has been dreaming that someone breaks into our house and stabs me and I die. What a revelation! Thank goodness for our friend, Justin, who is working on his plan of attack to help Eden get more comfortable in the world. Whew, I do not envy him his job. Thank goodness for the mental health professionals!

Cancer Sucks!

Sunday, May 14, 2006

The Good Life!

Here is hoping that all the mothers of the world are able to be with their children today.
We had a wonderful weekend! Me, Andy, Riley and Eden headed to Dayton to spend a few days with Andy’s Family. We celebrated Bonnie’s Birthday and Bonnie and Vaughn’s Anniversary and of course Mothers day. Andy’s Grandmother was visiting from (BOOOO) Michigan so the house was all booked up which gave us the opportunity to stay at a hotel so the kids could swim and boy did they. We practically had to drag Eden from the pool but of course she was practicing her backstroke!! We were not at all pleased with the hotel on Friday night so Sat we packed up and looked for a new one and went to many before we found one with an indoor pool that allowed pets (of course we wouldn’t go anywhere without our beloved Sophie and Cane) and later it became apparent we were being guided to this hotel by a higher power. Which I will explain in a minute. Andy’s family are all very musical and his Mom and Dad spend their Sat nights helping out at a little Coffee house in Troy OH called Nightsky. Vaughn has locals who come in and share their talents every Sat and the place is always packed. So we went up to enjoy an evening of Music, food and family games and Vaughn asked Eden if she would like to sing something and OF COURSE she did! So they went up and Eden sang Twinkle Twinkle and a very cute song Vaughn taught her which I am not sure even has a name and goes something like this……… Old Mother Hubbard went to her cupboard to get her daughter a dress, when she got there the cupboard was bare and so was the daughter…..I guess??............ Very Very cute and Eden LOVED singing in front of everyone. So after that we all headed back to the hotel for a swim and when we walked in met a very lovely women sitting in the hot tub and very soon her husband joined us. Well after a few minutes of talking it turns out he was a minister (Vaughn was a minister for many years) so they started to talk about many different things and it was very enjoyable to listen in on the conversation but it was late and Eden was done so we started to head for the room and the Women asked if we would gather to pray for Eden… And of course I never turn that down, so right there in the hot tub we all held hands and prayed for Eden and it was a very moving and powerful experience and Eden was very touched by the whole thing. After that the four of them began to sing and it was the most wonderful thing I have ever heard!!! Before we left they told us that they had been staying at another hotel and moved because they were not happy with it and thinking back to our move we all felt it was Devine intervention. What more can I say but THANK YOU GOD for giving me more then I could ever ask for on this mother’s day

Thursday, May 11, 2006

The Wilds of Columbus

What a great day for Eden. She was able to attend her kindergarten class trip to the Columbus Zoo. She was originally scheduled to be doing chemo treatments this week, but her low counts knocked her out of starting the chemo. It wasn't good that her body hasn't recovered yet from the effects of chemo, but it was great that she got to go on the bus to the zoo with her class.

I went along in case of emergency and Momma Hope just came along to enjoy the trip with Eden. We both had a very enjoyable time and even got left behind by the group (with two chaperones and a teacher) in the aviary. The birds sang quite beautifully once all of the kids left the area.

The female eagle was acting like she didn't want us looking at her nest (though we don't know if she had eggs or eglets in it); the male eagle didn't even bother to look our way. The baby elephant was outside hanging with it's mom. The rhino stuck it's tongue out at the kids. The gorilla, Max, slapped the glass and scared our group including Miss Diddle. The flamingos were impressive in their coloring and verbal displays. The otter was silly. The manatees were sleeping (they looked like big rocks). The penquins were outside, but didn't do much. The grizzy bear looked like he was sitting in a whirlpool the way he plopped into his "little river". The bonobos were hilarious, as always. Eden got to see an baby bonobo eat from it's mother's breast.

All in all a great day at the zoo. A special thanks to Tori's mom and to Emma's mom for being the "official" chaperones of our group and counting to eight (the number of children in the group) more times then I kept track of. They did an excellent job of seeing the animals, keeping the kids rounded up and making it an enjoyable trip.

Tuesday, May 09, 2006

A good Day!

Eden had labs yesterday and her counts are starting to move in the right direction. White count was up to 5.9…. (No more shots) and her Platelets were up to 28 which is still very low but they are falling anymore. She was given a platelet transfusion because she just can’t help being a wild child and the hope is she won’t need another one.. The current plan is she will start Chemo on Monday the 15th on an outpatient basis. Which basic means she will go in every morning and her urine will be checked to confirm it is diluted enough. They have a % guideline that they follow to protect her kidneys and liver. Once she is all set they will start one chemo which will run for half an hour along with a handful of protective meds and then they will start the second one after another hand full of protective meds. All in all I am predicting 4 or 5 hours if all goes well. Once chemo is done she will need to be on IV fluids for at least 8 hours but we will be able to do this at home using a pump. The hydration is extremely important to flush the chemo through her body so it does not have a chance to sit in her kidneys and cause damage. Eden will return to clinic on Friday to make sure her platelets will be at least 75 by Monday. The upside to her chemo being delayed is that she will now be able to join her class on the fieldtrip to the Zoo on Thursday. I can’t tell you how happy we are she will get to attend!! Today is a good Day!!!

Monday, May 08, 2006

WOW! What a weekend!

Our extended weekend was a blur!

Thursday, Eden had to be at Children's at 8 AM for a blood count check. She was still low pn platelets, so we stuck around for a refill. By going in at 8 AM, she was accessed, checked and refilled and home by 1 PM. We stopped by the garage sale (since it wasn't open I thought it would be a safe bet to stop). The garage sale set-up day was in full force when we got there. Tony and Roby drove all the way from Urbana to help. Roby was an absolute angel and played in his playpen all afternoon with Eden "babysitting" (entertaining him). Mommy picked Eden up after work since we had so much work still to do.

The garage sale turned out to be a HUGE success. We didn't price items, but took donations only. WOW! People are very generous. We had many people buy things and then return to donate others!

Friday night Lt. Dan's New Legs did a benefit show for Eden at The Barn in Dublin. What a great show and another huge success. I finally got my green apple martini! Mommy, Andy, Aunt CeCe, Rod, Stephanie, Jill and many others were there selling raffle tickets and raising money for Eden. Daddy and I were very late to the show due to the garage sale, but we made it.

Mommy has some great support around her, too. She has raffle tickets for sale to win an OSU football that will be autographed by Jim Tressel. The winner will be presented the ball by Jim and will have their photo taken with him, too. Tickets are 1 for $10 or 3 for $25. Contact Lisa for ticket purchases: mailto:adams_lisa@emc.com I think Rourke will have some tickets for sale at work later in the week for all of you Honda people out there.

Eden has an appointment at 9 AM today for more blood counts. I sincerely hope that she doesn't need to have a transfusion. She needs to get her next round of chemo started, but her platelets have to be 75, 000 and last Thrusday they were only 23,000. Lisa said that she hasn't had any new bruises over the weekend, so we are very hopeful that her counts are on the rise.

I'll update later when I know something concrete.

Friday, May 05, 2006

The road less traveled

Yesterday was a very busy day for all of us. We headed to Philly to talk with the Dr's there and learn as much as possible about their plan for Eden. What we found out is there is no plan, no roadmap, noprotocoll. Relapsed Neuroblastoma is dealt with on a case by case basis. As one treatment may work for 10 kids but not 1 or may work for 1 kid but not 10. We will be letting Eden's body tell us what our next step is. After listening to the Dr. here is what we know. Eden will do one more round of Topatican/Cytoxin (chemo) and then she will have another MiBG, Bone Scan, CT and Bone Marrow Aspiration and Results will be sent immediately to Philly and they will contact us to discuss the best option. IF: she has progressed Disease we will probably go forward with the IMiBG treatment. IF: it has held steady or improved we will probably look at either doing the ABT-751 trial or 3F8 Antibody trial at Slone-Kettering. (At the bottom I have included a little info about each trial)

The Doctor explained it exactly like this: There is no cure for Neuroblastoma and at this point even if we couldn't see disease in her body we would still know its there and WILL come back, so the idea is to reduce it as much as possible and then try to hold it steady while allowing Eden to live a normal life.(school, playtime, friends.........) The current problem with the IMiBG is that it is very hard on the Platelets and if you have been reading the blog you will see that Eden's body is not able to produce the platelets once they have been compromised very well, so that would mean she would probably end up having to have a Stem Cell Rescue and she only has enough Stem Cells for one Rescue so we want to try and save that treatment for another time if we can.

The ABT-751 can be given once a day at home without effects on her counts and she could continue on that for years with dormant cancer cells or it could not work at all!! We will do one thing and as long as it works we will stay with it and when it stops working we will try something else. Eden's quality of life will be an equal priority with Disease control!

The 3F8 Antibody study presents a few more problems but could be more beneficial in the long run. It does cause some pain while it's being given and can cause fevers and she will have to spend some time in the hospital with this study.

Each study is not without its good and bad and our goal is to find the less of many evils!

An investigational oral, once-daily antimitotic (a class of drugs that inhibit cell division), ABT-751 is currently being studied in Phase II clinical trials for use in lung, colon, breast and kidney cancers. A Phase II trial is planned for refractory pediatric neuroblastoma. ABT-751 was granted Orphan drug designation by the FDA for pediatric neuroblastoma. ABT-751 is not a multi-drug resistant (MDR) substrate. MDR substrate compounds often develop resistance to chemotherapy drugs, and ABT-751 is active pre-clinically in chemo-resistant tumors.

An earlier study has shown that treatment with the 3F8 antibody and granulocyte-macrophage colony-stimulating factor (GM-CSF) appeared promising for the treatment of Neuroblastoma. In this study, investigators want to determine if adding beta-glucan and 13-cis-retinoic acid (isotretinoin/Accutane) will make the treatment even more effective.
Antibodies are made by the body to fight infections, and in some cases, to fight tumors. The antibody 3F8 is made from mice and can attack Neuroblastoma tumors in patients. 3F8 has been used safely in many patients, and it has killed cancer cells in some patients.
One way 3F8 can kill cancer cells is by causing the patient's own white blood cells to attack the cancer. Granulocytes are one kind of white blood cell. GM-CSF increases the number of granulocytes in people, and it makes the granulocytes better able to kill the cancer cells

Wednesday, May 03, 2006

Precious Cargo, safely delivered by Captain Jack

They're back in Ohio, safe and sound that to the fabulous Jack Fink, Rourke's uncle. Thanks so much, Jack for taking care of our precious babies and delivering them home safe and sound.

Jack flew Eden, Dad and Mom to Philly this morning, hung out and then made the return flight with two additional passengers: Christi and Angela Thomas. The boys and I met them at the airport and it was awfully cute to see those girls running and playing, even though poor Christi looked completely worn out. Eden has a tendancey to have that effect on people.

The meeting went well, although I am not going to speak to any details right now. Lisa and I are going to put something together in the next few days, but we need to confer before doing so. I am so overwhelmed with this garage sale stuff that I just cannot get anything else done. As I have said before any volunteers would be truly appreciated. We need help on Thursday to set up and price and volunteers to help man the sale would be appreciated, too.

Eden has labs scheduled tomorrow morning, she'll probably need more platelets. Her white blood cell count was so low on Tuesday that we have to continue to give her Neupogen injections every day. I wish these platelets would trend up already! At least then we would know that her body is recovering a little.

Okay, I'm done. I'm exhausted and I have to start again, too soon. Um, a green apple martini would be so very welcome right now.

Tuesday, May 02, 2006

TWISTED? Nah, just making a scary thing fun!

Tonight my husband accused Eden, Riley, Rodger and I of being twisted. It seems that he didn't understand the fun involved in helping Eden rid herself of of bunch of dead hair.

The hair has been falling out for days. Today, the hair loss started to become a problem for Eden. The hair was in her mouth, eyes, itching her skin, fell into her food at dinner and many other complaints that I can't even remember. This evening she asked if she could just go ahead and pull it all out and get it over with. Her dad told her to go for it. GO FOR IT SHE DID; she even invited Riley and Rodger to join her in the festivities. How many siblings ever get the chance to REALLY pull out their little sisters' hair and not get in trouble?

I think it helped all three of them to get a better understanding of the fact that her hair roots were dead, that it did not hurt and even though it may be a little strange, a family can have fun doing anything. The boys were having fun and so was Eden. She had everyone's undivided attention: always a bonus for our Princess. It wasn't as scary for any of them as it might have been if Eden hadn't made it tonight's entertainment.

I must admit that I really did miss her little bald head. She has a perfectly shaped head. There are no lumps, bumps or craters on that little noggin. I believe that you will all agree that her eyes just overwhelm you with their beauty. Not everyone can pull off bald quite so beautifully.

Da Bald Baby is back! She found quite a few reasons to be happy to be bald again. Some are below:
  • More playtime in the bathtub
  • No more tangles to fight in the morning
  • No hair conditioner in her eyes
  • Her head dries fast after a bath
  • No more looking for a hair doo-dad to match her outfit
  • She can have tattoos on her head now

She has a big day tomorrow and she is excited. Stayed tuned for more pictures tomorrow.

Oh how I love kissing that little bald head!

Her platelet count was WHAT?

Yep, Eden and I spent another day spent at the outpatient clinc for a refill of platelets. She's burning them up like crazy! Her platelet count was 22, 000. Normal is 150,00 or more. Not very much fun for such an energetic little girl.

She had a minor fall from her bike last night that looks as if she crashed into a moving car (she just fell off, no car). She has bruises all over her poor little body from just playing. The injection sites for the Neupogen that we give her daily to boost her white blood cell counts look awful.

Today's counts were as follows:
  • white blood cells count: 1.0
  • Red blood cell count: 3.53
  • Hemaglobin: 11.1
  • Hematocrit: 30.6
  • Platelet count: 22,000

ANC (Absoulte Neutraphil Count): 360 which is DANGEROUSLY LOW!

So when I say please visit responsibly, I'm not trying to be mean. I'm trying to get everyone to understand that her counts are extremely low and even a sniffle or virus could land her right back into the hospital. If her fever hit 100.5 degrees or more we are assured of at the very least a 24 hour inpatient vistit. It will probably be like this off and on for a while. We just want to screen visitors (even better, have them self-screen) in Eden's best interests. We like having people around, but Eden's health comes first.

Eden is scheduled to fly to Philadelphia on Wednesday morning to meet with one of the foremost neuroblastoma researcher/doctors in the US. She will be meeting with Dr. Maris at Children's Hospital of Philadelphia (CHOP) for her consultation visit to prepare for her next type of treatment.

Thursday Eden is scheduled back into the outpatient clinic for labwork to be done and to see if her counts are going to recover fast enough to start chemo as scheuled next week.

Friday we hope that she will be able to return to school.

Speaking of scheduling; since Mom and Dad are both going to be off on Wednesday to fly to Philly with Eden, niether can take off Thursday to take her to clinic. I had planned to spend all day on Thursday helping my friend, Stacey, and my mother-in-law, Hope, to organize, price, pack, transport and prepare for the Benefit Garage Sale for the Eden Adams Fund. I know that I will not be much use to them as I will spend most of the day at the hospital with Eden. If there is anyone who might like to volunteer to help prepare for the garage sale or to volunteer to work at the sale on Friday and/or Saturday (9 AM to 3 PM both days), please email me as soon as possible at mailto:hondale@sbcglobal.net. Thanks for even considering helping. This started out to be a small sale and through the loving donations of our friends, family and community it has become HUGE. We have about six garages full of things to be priced, sorted and organized by 9 AM Friday morning. Whew, pray for us all.

Other then having low counts Eden is her usual happy self. She is excited to FINALLY get to fly in an airplane. She is excited to go to a new hospital. She is excited to meet a new doctor and nurse practitioner. She's just a happy girl.

Everyone that will be at CHOP tomorrow: Eden and her mom and dad will be at the Woods building. Please be sure to introduce yourselves to them. I am so bummed that I cannot go but I always get left behind. Mom and Dad can sign consent forms and I cannot, so here I'll sit worrying myself into a frenzy until I know that they have landed safe and sound back in Columbus. It's not that I won't have anything to do with myself while they are gone, but just the fact that I won't be there to ask my questions of the specialist. ARGH! Ah the perils of stepparenting!

So that's what's up today. Sorry for the delay in updates, but I am busier then a one-legged man in a kickboxing contest!