< Princess Eden Adams: October 2006

Princess Eden Adams

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

Tuesday, October 31, 2006

All is well

Sorry I haven't updated in a few days. We had a very busy weekend followed by some Computer Issues.

Eden continues to feel great and today is the last day of her ABT-751 for the next 14 days. It is thought that if she were going to have a bad reaction to the medicine that she would have had it by now but we will wait a few more days before jumping for joy...LOL Please continue to pray that this new Drug will keep her disease at bay so she can live a Normal 6 year old life for as long as possible. She is back at school almost full time. We still must make twice weekly visits to clinic for labs for the next 3 weeks to be sure her counts are holding steady. The longer she is on this Medicine the longer her clinic visits will get spaced out. We will be going back to Philly on Nov 15th for a check with Dr. Mosse and to get her drugs for that cycle and then again on Dec. 4,5 and 6th for Scans and to start her third cycle and so on and so on. We wont have to go back to Philly for the beginning of every cycle but I am not sure at what point that will start.

Last Sat Aunt CeCe had a huge Halloween party which was planned months ago but not much was done because we figured we would have plenty of time the last week to do it and of course last minute Eden and I had to go to Philly and she was in DC for work. So, Come Sat morning the running began and we ran and ran and ran getting everything ready and then we cooked and coo.................................OH no the power is out!!!!! Yes 2 hours before the party the power went out. We checked the breaker box and everything seemed fine and as I walked out the front door the problem was very evident. A tree from next door had been knocked down by the wind and had ripped the power lines right out of the pole. AEP was fast to respond but we were told it would be hours and hours before it was fixed. So, we took all of the uncooked food to my Brothers house (who thankfully lived a block away) and we started lighting candles and calling for more candles. Everything turned out just fine and it was a great party.. We even had the sound effects provided by AEP in the way of a chainsaw cutting down the tree. The whole thing was quit funny.

Sunday morning I woke to a call from my Sister that there had been a fire at her house sometime in the early morning but they were all ok and the damage was minimal. It is unsure of what caused it because it couldn't have started until at least 5 or 5:30 in the morning because at 6 although the house was full of smoke the only real Fire damage was the kitchen table. There is a lot of smoke damage and we worked all day Sunday to get one room back to normal and it will take some time to clean the whole house. We are very thankful that CeCe and Joe and Rod were ok. When I told Eden about the fire, her response was Is CeCe ok? Is Joe ok? Is Rod ok? Is my Room ok? I think for the tender age of 6 her priorities are pretty well placed. lol

I will update with some pictures of the Witch and Darth Vador soon!


Thursday, October 26, 2006

And the heavens smile upon us

Eden and I showed up this morning at 8:30 for her MiBG and then went straight up to clinic to start her new meds. (ABT-751) We were here about 5 min and Dr. Mosse came in to go over everything about it with me. BUT first she had some very good news for me. Eden's MiBG was completely clear!!!! We are now NED once again!! If you remember she had her MiBG done about 3 weeks ago for the final phase of the protocol for the MiBG therapy she did in Aug and the results from that were very good but she still had disease in her belly area. Dr. Mosse said that in some cases the MiBG continues to work after the 6 week period and for Eden that is the case. As you know we have been very worried that Eden has been off treatment for so long because of the infection and low counts so if anything I was expecting the scan to be worse then the last and never did I imagine it would be better!!!! Dr. Mosse is very pleased and thinks Eden could not be starting the ABT at a better time.

Here is basically what we talked about today. This drug is a form of Chemo but it works different then the chemo in that it only seeks out NB cells to kill and it does not effect any other cells........Red and White cells, Platelets, Hair follicles............ So it is a wonderful drug to give children a good quality of life! She will take 7 pills a day for 7 days and then nothing for 14 days and then all over again and again and again for as long as the meds work. There are 3 different ways this can go. Worst case- She will not be able to tolerate the ABT and will have to stop taking it right away. Worst Case #2- she will be able to tolerate the ABT but her disease will progress on it and if that happens we will have to stop this treatment and go to something else. Best Case- She will tolerate the ABT and it will keep the Disease quite for years! She has seen children take this for up to 3 years at which point they must be removed from it. Of course that is getting way way ahead of ourselves but a mom can wish, right?? Getting back here has been our goal since the NB showed it ugly face again in March but we have always known she will have to stay on some form of treatment forever because everytime it comes back it will probably be worse then the last. Dr. Mosse was very positive about the fact that we know the MiBG therapy works for her and it is always an option in the future. We are not going to be inpatient as expected because the hospital is so full. (The thought of a hospital of this size being FULL of sick children breaks my heart) So we are going to do the PK study outpatient which is just fine by me........ Not that I don't LOVE sleeping on a Hard, uncomfortable couch while getting woke up 30 times a night by nurses..... So we will come to the day hospital from 12 to 6 everyday and they will draw blood every hour for those 6 hours watching the level of ABT in her system. We will be leaving on Friday to head back home!

Tuesday, October 24, 2006

Another uneventful flight to Philly thanks to the fabulous Capt Jack. It was snowing in Columbus when we left but we haven’t seen any here yet. After we landed and got to the Ronald McDonald House and settled, Eden was starving so we ventured out for sustenance and found a McDonald’s close by and after that hit the grocery store for a few staples to get her by late in the night when she is hungry. We can back and Mommy attempted to work for a few hours until Dinner at 6 which was so so yummy thanks to all the wonderful volunteers here and then they had crafts for a few hours and we headed back up for bath and settle down while I tried to work for a few more hours.

Eden went to school this morning for a few hours and as we were heading out of her class they all wanted to fly with us to Philly. I wish I could have taken them! But the best I could do was promise to put a picture of the plane up on the website but when we got off the plane here in Philly it was so very cold that we ran for the hanger and I didn’t get one so I am posting an older picture of Eden and sweet Angel Christi with Uncle Jack in front of the plane. I hope her wonderful teacher Mrs. Russell will be able to print it off to show them. It’s very interesting I should have a reason to put this picture up today of Eden and Christi. I have been thinking a lot about her today as it was just over a month ago that she went on to a better place and her last few weeks were spent here in Philly. I still struggle every day to understand why such horrible things must happen to these very innocent children. Christ’s Mom Angela sent me an email today letting me know that Christi did ABT-751 for 7 ½ months and has no problems with it. I pray so hard that this will work for Eden for a very long time.

The other pictures are of Eden at the airport waiting for the Taxi (she was feeling fine just trying to get warm), Eden doing Crafts at the RM House and in bed at the RM House.

Pictures are all below. Had a few problems getting them uploaded.

Monday, October 23, 2006

Sunday, October 22, 2006

Heading to Philly

Eden and I are heading to Philly in the morning with the wonderful Capt. Jack. Based on the email from Pat B from CHOP it will be a very busy week. Because she just had a Bone Marrow biopsy we will be able to skip that this time but she will have to have a CT Scan, Echocardiogram, Labs, MiBG and then she will be admitted on Wed for the PK Study. It was optional for us to do the study but i couldn't imagine not doing it if it helps them learn anything about the drug or disease. She will love being able to stay and play at the Ronald McDonald House this time because last time she was admitted right away and not allowed to go back because of the radioactive status. She will be released from the hospital sometime Friday and Uncle Jack will fly in to get us on Sat morning. I know that tons of our NB friends have done the ABT-751 and we welcome any tricks or tips you have for us. I have been trying to read as much as i can about it but there is nothing like living it.

Rourke is going to stay here in Columbus to care for Riley and Sophie (Riley and Eden's Dog) and Riley is very excited about showing her off to all of his friends at Dads. Rourke and I will have to do some trading off over the next few months so neither one of us has to miss to much work . We will making a lot of trips to Philly with this new drug as everything has to be done there as part of the protocol. We both agree that Riley should go to Philly at some point but because she will be inpatient for a few days this trip its not the right time. We will be going every 21 days for the next 3 months and then every 42 days thereafter. She wont have to be inpatient for any of trips except this one so there will be plenty of opportunities for Riley to go.

The kids got to go to Boo at the Zoo last night and as always Eden said it was the Best day in her whole life! I love hearing that... They had a blast and Eden pretty much ate the whole time. When she was very sick with this infection she lost 4 lbs and was down to 38 pounds but between a new appetite stimulate and her feeling so much better she was back up to 42 pounds on Friday at Clinic. Her counts were : White 6, Hem 12.4, Platelets 33 and her ANC was 2940. We expected to see her ANC drop once she stopped taking the GCSF shots and her Platelets seem to be holding steady and moving up albeit slowly.

I will try to take lots of pictures while in Philly and update the blog often.


Thursday, October 19, 2006

What a difference a day makes

WOW. What a crazy 4 hours it has been. Last night i sent an email to Dr. Yeager asking him what he was thinking now that we know where Eden's platelets are and he replied about 1pm this afternoon and had been conversing with Dr. Mosse in Philly all day. They both agreed that we should start the ABT-751 right away. Right Away? Right Away! So I emailed him back and said can we talk tomorrow at Clinic? ( I was supposed to be driving to Cleveland for a meeting for work....OOPS) Shortly after that email he called to say yes he would be there and we had a few minutes to chat then and he does not think its a good idea for her to wait for platelets to start a different study but said we could try a drug that is sometimes known to improve platelets but only works about half the time if that. So that is where we were and then i got a call from Pat B which is Dr. Mosse's nurse and we started talking and i explained what we wanted to do and she said that was fine but why did i think the ABT-751 couldn't help Eden?? So i began to explain what i have been telling all of you all this time that it might hold it steady but we wouldn't see improvement on this drug.. And she said that is not true at all. So what we have thought to be fact all this time is not at all! So, i talked with Rourke and we decided in light of the facts we have now that it makes sense to get her on treatment NOW. So Monday morning we are headed to Philly. She will be there Monday through Friday for all the tests required for this protocol and then she must go back every 21 days for the next few months and then every 42 days for as long as she is on it. I was thinking i could still make my meeting in Detroit next week but i guess that would be pushing my luck?? LOL

We feel so very blessed each and every day that we still have our sweet girl here in our arms and that she is feeling so well. We know to many parents out there that have only the memory of their child to hold onto. I cry for those parents so often as it is not fair to lose a child EVER!

Eden went to school all day again today and she is feeling oh so wonderful! We will keep you updated as the plan progresses.

Wednesday, October 18, 2006


Eden has been feeling great. She went to school all day Monday and Tuesday and really seems back to herself now. i have missed my spunky little girl so much. I spoke with Dr. Yeager last night and he said her Bone Marrow Biopsy was unchanged. less then 1% on the left side. He seemed very disappointed but I was thankful it hadn't gotten worse. Based on those results that would make her eligible for the Antibody studies but the big problem now is her Platelets. At clinic today her counts were....... Platelets 31 and ANC of 10,000. (sorry i didn't get her Red Blood but it was fine) Platelets of 31 mean they are finally holding steady but not moving up fast enough to get us to 75 to meet requirements for Antibody study and ANC of 10,000 means she can stop the GCSF shots after tonight. Her ANC will probably drop by half once she stops the shots but 5000 is still very good. Even for the ABT-751 she must have platelets of 50 so i would guess we will be talking with Dr. Yeager and Dr. Mosse soon to see how quickly they think she will be able to start on it. I really really hoped she would be able to do the antibody study and it is my plan to have Dr. Yeager speak with the Study Dr. In NY to try and find a loop hole to get her in. i don't feel comfortable putting her on the 751 and just sitting and waiting for the NB to get worse.

I will update again once we talk to the Doctors.

Monday, October 16, 2006

School Days

Eden was released from the Hospital on Sunday about 5pm. As we were walking out Aunt CeCe called to see if we wanted to meet her at the Halloween Store over by our house. FYI... Halloween is by far Eden's favorite holiday.(thanks aunt Cathy for the wonderful Halloween seek and finds you sent) So we walked around the store and looked at all the spooky, gross, disgusting things (Eden with a smile from ear to ear) and then headed to grab her Rx from the drug store for the new antibiotic and I don't know why i should be surprised but no one could fill it.. So they said they would get it in on Monday for us but we still needed 2 doses before then so off i went back to the hospital where they were able to give me enough to get through. They are all just so wonderful there!

Eden got up this morning and went to school.....WOOOHOOO and even better she stayed all day and didn't have to make one trip to the nurse. She is just so amazing! In any other world i don't know that i could have felt comfortable sending her today but outside of Rourke or myself there is no one i trust more then Mrs. Russell, Miss. Diddle, Mrs. Zorn and Nurse Mary. They all love Eden and would never let anything happen to her. The kids in her class are all just so wonderful and so many parents have contacted us just to let us know they are there. What a wonderful community.

SO, Here is what i learned for sure from Dr. Yeager. He has only seen a few cases of VRE but every one has responded to the antibiotic Eden is on very well and completely recovered from it. By that, i mean they have all gotten better from the infection and the VRE was gone when tested. She will be tested a few times after she is done with the meds to be sure its gone. She has improved 100% since being on the new meds. This shouldn't effect treatment options at all which i am so thankful for. So far we have not heard back about her bone marrow biopsy and she will be scheduled for another MiBG in a few weeks. She has been off treatment since we came back from Philly, so almost 2 and 1/2 months. As you know her last MiBG scan showed great improvement but this Cancer can be very sneaky and fast. Based on her last scans Dr. Yeager does not consider what we could see to be "measurable disease" and if we still see the same on the next scan she may not be eligible for the antibody study here or in NY. It's kinda a catch 22. But its not hard to know what we wish for even if it means she cant do the Antibody study. If that is the case we will do the ABT-751 in Philly which is the Chemo pill.

While writing this update i had to take a break because Eden came down to have one of her strange conversations with me.....lol She asked if i remembered just a few days ago when it was still painful for her to walk because of the sore in her private area and i said yes. She said "well look at me now Mom, I am all better! Mom, you know the hospital tries very hard to make kids better and sometimes they do and sometimes they don't. They were trying to make Ian and Jaret and Christi better, Right? They didn't want them to die, right?" I can only imagine that she needed reassurance that she was ok. Sometimes its easy to forget how little she really is. She handles everything so well and acts like such an adult all the time that i think we forget sometimes how fragile she really is? The other day in the hospital we were having a conversation about nothing really and she said "when I get my port out" ................................................. I heard nothing else. I unlike her have the disadvantage of knowing she will probably have her port in for the rest of her life and it breaks my heart.

I do feel truly blessed to be her Mother and i wouldn't trade that for anything in the world and sometimes i can almost trick myself into forgetting how serious things are for a few minutes and it just takes the smallest thing to jolt me back to reality. This is what our life is and I accept that but i wish so bad that she didn't have to!

Sunday, October 15, 2006

Chapter 3 of the Good the Bad and the Ugly

The Good:

White Count: 5.7
HGB: 12.3

ANC: 3477

We will probably get to go home today and she is feeling very well.

The BAD and the UGLY:

They have figured out why Eden's little private infection is not getting better. Based on the cultures they did of the open sore on Thursday she has something called VRE (VANCOMYCIN RESISTANT ENTEROCOCCUS) Vancomycin is a very powerful antibiotic in our arsenal when Eden gets infections and her body is now basically rejecting it. VRE is also highly contagious to anyone who touches it and it can live on surfaces for up to 30 minutes. Most healthy people will only carry this and never know they have it. It becomes a problem with someone who has immune issues and it seems its a big problem with the elderly. So while Eden is in the hospital she is in isolation to protect the other children and the nurses must gear up before coming into the room and when she goes to clinic she will have to go directly to an isolation room. Here is the deal: Eden has this infection in her body and the drug of choice to rid her of it would be Vancomycin but because that wont help her now they must start looking for another drug to help with the Infection as well as the VRE. She was started on Zyvox last night and will continue on it every 12 hours for the next 2 weeks. At which time if the infection is gone she will be re-tested for VRE and if it is clear she will be tested again for it 3 weeks later. If it is still clear then she no longer has it but every time she gets an infection they must test her for it again before starting her on antibiotics. I am sorry to say that I don't know what it means if the infection doesn't clear up or if her tests continue to come back that she still has VRE. I am sure I will have a chance to speak with Dr. Yeager today and get all the details. I also don't know how this will effect the treatment options we have been talking about or if it will.

I will update with more information when I have it.

Thanks for checking.


Friday, October 13, 2006

Her counts today are:

WBC: 2.1 (5-14.5)
RBC: 4.10 (4.0-5.2)
Hgb: 11.8 (11.5-15.5)
Platelets: 40 (140-440)
Bands: 29 (5-11)
Segs: 10 (32-54)

ANC = 819

Avg Temp has been running 98.8.

October 13th Tutoring session in the hospital.

Currently Eden is involved in a tutoring session in the hospital with Mrs. Russell and Ms. Diddle; we began tutoring this week because of all the school that Eden has been unable to attend.

Thursday, October 12, 2006

October 12, 2006 Evening After Surgery

Eden had a rough day. We started "nothing by mouth at Midnight" on the 12th and didn't make it into surgery until 4:30pm..... That's a long time to have nothing to eat or drink. Surgery today consisted of a bone marrow biopsy and labia exploration and sample. The biopsy is to see if she has contamination in her marrow and the sample taken from the labia is to find out why it’s not healing. The exploration of the labia found a lesion about ¾” in length and very deep. Obviously this is causing her a ton of discomfort and is probably one of the reasons her counts are not recovering.

On Friday the 13th Dr. Nick will be talking with us to see if any of the samples taken today grew anything positive and possibly discuss future treatment options. I’ll try to give a more detailed update on Friday but wanted to share pictures. Eden really loves the e-cards that are delivered daily. Please continue to shower her with them. We didn’t get to the ones from this morning until evening but they still managed to make her smile. In the pictures she looks great considering the day that she had and the Pumpkins and Gourds were from one of her friends here at the hospital, Thanks, Tasha.

Her counts today are:

  • WBC: 0.9
  • RBC: 3.30
  • Hgb: 9.5
  • Platelets: 36
  • Bands: 7
  • Segs: 3
  • ANC = 90

Avg Temp has been running 98.8.

Wednesday, October 11, 2006

Here we go again

Girly girl is in-patient AGAIN! J5, Room 14. She discovered a little open sore down in the crevices of the peepee area (sorry if TMI) early this week which is still from the infection she has a few weeks ago that landed her in the hospital for a week. Dr. Nick has been watching it closely and today decided he wasn't willing to risk another infection so in she went. The problem is that of course any open sore is susceptible to infection but she has no immune system for one thing and another is this is a very hard area to keep really really clean. If an infection occurs it will most likely end up in her blood stream and could even go to her heart as she has nothing in her body to fight the infection. So they are giving her very high dose antibiotics and watching and waiting. She is also going to surgery tomorrow of a Bone Marrow biopsy which has been the plan all along as part of her normal scans looking for NB. They have been holding off until her counts started to recover but seeing as they haven't as of yet they are going forward. Also in doing this Dr. Nick wants to see if the original infection was bad enough to embed itself into her bone marrow which could be a reason her counts are still stalling. So honestly we have no proof that any of these things are happening or will happen or that any of this is the cause of anything but we are just being very cautious. It may not help but it cant hurt.

Eden has also starting tutoring as of today because she has missed so much school and she is SOOOO very lucky to have her wonderful first grade teacher Mrs. Russell doing it. When i left the hospital they were curled up on her bed reading. Eden also got to spend some precise time with Mrs. Zorn and Miss. Diddle earlier this week when we attempted to go to school. (only lasted a few hours) I was in with Nurse Mary going over any precautions needed to be taken and when i came out i found Zorn, Diddle and Eden on the floor of the office cuddling. One of the sweetest things i have even seen! In the past 2.3 years i have felt an overwhelming need to ingrain every memory into my brain never to be forgotten and this will be one of my favorites! I only wish i had my camera.

I will try to keep you updates as i get new information.


Monday, October 09, 2006

Days and Nights

As you can see by the time, sleep is not coming tonight. Eden has been fine. Friday at clinic went well, no platelets for the first time in months. i am sure it was just a fluke and she will need them Monday. They really don't expect to see much improvement in her counts for...........Wait for it................7 to 10 days! LOL And i am sure her platelets will take longer then that as they have always been slow to bounce back, but that is fine as long as they DO bounce back. The longer we wait for counts the longer she is off treatment which makes me very nervous. I lay in bed sometimes at night and my "evil" imagination pictures little cancer cells in there doing pushups and blowing whistles gathering the troops. Which could explain why i am up at 1:20 in the morning updating her blog.

Eden is feeling well enough now that she is getting stir crazy being stuck in the house and i would love to be able to let her go to school on Tuesday but unless we see a huge jump in her ANC, i just cant bring myself to send her.


Friday, October 06, 2006


Eden has been feeling pretty good. Better every day. This morning was Clinic and for the first time in weeks and weeks she needed no platelets. (Of course she just got them on Wed) But still we are more than happy to walk out of there with everything we walked in with and nothing more. Minus a few drops of blood of course.

Eden has not been her sweet adorable self for some time now and over the last few days I am seeing glimpse of it more and more often but I am sure it will take time. I don’t blame her one bit for being grumpy but I sure miss my little sweetie. I think poor Riley is taking the brunt of it though as he cannot even look at her without getting his head chewed off. lol At 4:30 this morning while laying in bed Eden told me she couldn’t sleep because she was afraid something was going to catch on fire and she proceeded to ask me if I turned off the stove from the noodles I cooked for dinner and if I blew out all of the candles before coming to bed. After assuring her there were no open flames in the house she finally fell back asleep. I wonder if these are worries she has about treatment or cancer that is manifesting themselves in this way??? Hows that for phycoligy 101?

We are looking forward to a restfull weekend of hanging around the house and doing a lot of nothing. Hope your weekend will be just as enjoyable.


Wednesday, October 04, 2006

And now home again

Eden was released tonight. She is truly feeling so much better! Now we just need her Counts to catch up. She needed another platelet transfusion today and her ANC is still a big fat 0.
(7 to 10 days, 7 to 10 days, 7 to 10 days) .

Thank you all once again for all the wonderful E-cards. Eden gets such a kick out of them and many of you are starting to learn how to add personal pictures. I must say we are so proud that Mrs. Zorn has now mastered this task. We knew you could do it Mrs. Zorn! Believe me when I say that Eden loves loves each and every card! Thank you Robin for the jokes. She loved telling them to all the nurses last week. One of the ladies that works at children's is always just so sweet to Eden (I believe she met Eden through Mamu Hope) anyway whenever she knows Eden is in the Hospital she always buys her something special.. Today it was a big rubber Rat and Spider so she could scare her brother.. It was so funny when she hid it under her nightgown today and when her nurse walked in, Eden started holding her belly saying it hurt and felt like something was moving around in there only to pull the Rat out.. She and I though it was very funny.. The nurse? Not so much...... Actually they are all very good sports about everything! They have to be to do the job they do day in and day out.

We had a very special surprise Visit today while still at the hospital. Codey came by with his crew after they hit the clinic and it was SOOO nice to see them.. Codey was so funny racing up and down the halls of J5 on one of the riding toys. He had a bit of a cough so he didn't go into Edens room but stood at the door and said hi. It was so nice to see how well he is feeling. He will be leaving on Sunday to head back to NY for 3F8's. GO Codey!!!!

As soon as we see Edens ANC start to rise i so want to get her back to school. She misses everyone so much.

Thanks for checking in!


Tuesday, October 03, 2006


We are inpatient once again! All went well with the stem Cell Rescue except Eden spiked a small fever and Dr. Nick thought it best to keep her overnight to make sure she isn't having a reaction to the Rescue.. Actually its not the stem cells that she would react to but the preservatives in the Stem Cells. (I am once again put off from Cream Corn for awhile) Anyone who has ever had stem cells knows they smell like Cream Corn gone bad......Yuck!! Last time i was unable to eat it for 6 months.

Anyway, As you can see from the pictures above she sure doesn't seem very sick in fact this is the best i have seen her in weeks. My hope is she will get out tomorrow but we will just have to wait and see. While i sit here typing she is in her bed coloring and on the phone and she ate a great dinner. I added the pics of her in the tub because they had to remove her access to change it because it has been in for a week and she asked if she could take a bath while it was out.. She has missed play bath time.

Stem Cells are in!

Eden received her stem cell rescue today. Daddy said that it went like clockwork and she is resting comfortably. He was planning to nap right along with her. She should be ready to head out of the hospital after 4:15 or so. Someone else will update with more details later.

A Great day to be alive

On my way to work this morning I was memorized by the sight before me. A perfect rainbow! It was so bright and went from one side to the other just as you would expect a rainbow to look. There was also a much lighter one right above it. People were stopping on the freeway to look at it. How can a bad day ever start out like that? As i was driving towards the rainbow i could imagine all of the sweet friends we have lost this year sliding down it smiling and laughing and having a wonderful time. These amazing children suffered so much here on earth that my hope is every min in heaven is filled with Love and laughter!

Eden is at children with Dad receiving her Stem Cell rescue as I type. Last night she seemed to be feeling much much better. It was so nice to lay in bed with her and talk and giggle again instead of the crying in pain we have seen for the last few weeks.

I feel so blessed for everyday that i have with her and Riley! They are truly wonderful children.

Monday, October 02, 2006


We pretty much just hung out around the house this weekend. Eden of course has no resistance to anything so leaving the house seemed like a bad idea. She had clinic this morning and Dr. Yeager is back in town so she is set up to have her stem Cell Rescue tomorrow (Tuesday) and Dr. Yeager said we should start to see her counts coming up in 7 to 10 days. (These must be magic numbers because everything in the world of cancer seems to be 7 to 10 days...lol) Turns out I was oh so wrong about the 3F8 trial in NY. In order to do this or any NANT study she must maintain an ANC of 750 and platelets of 50/75. We truly cannot wait that long to start treatment. The one exception to this rule is ABT-751 out of Philly. This is the oral Chemo which really has no side effects but also is not a drug used to get rid of any of the NB but just keep it stable. There are children who can stay on this drug for long periods of time with no increase so we will be talking more with the Doc's soon to get a "longer” term plan together. I don’t know if she can do some of the trials while on the 751 or not. She should be ready to start the 751 in 3 or 4 weeks depending on how long it takes her counts to recover.

Eden did have to have platelets again today and still is not feeling the greatest but making improvements. She misses school so much and all of her friends and teachers......

Thanks for checking in.