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Tuesday, March 28, 2006 6:00 PM CST

Wow has it been a while since I've updated!!! I imagine I should apologize for not keeping in touch with those that continue to leave me messages. I know some think I have fallen off the face of the earth.

Life is somewhat odd and still a huge adjustment that I'm not sure will ever go away. I still find myself picking Amanda's favorite things up off of store shelves, and then realizing I need to put them back. Sometimes I still feel like she's just gone for the day and will soon return home. It's especially difficult when I hear others say, for example, "There's your daughter." Then I look up anxiously and realize that it wasn't me being spoken to.

It's hard to believe that this Saturday, April 1 will mark "the first year". It's been a bit of a struggle these last couple of weeks thinking back to three years ago when she was diagnosed and everything we went through upon facing the initial shock. A year after diagnosis she was doing so extremely well. She was your typical teenager just full of life and living life to it's fullest. I remember Amanda and Jay going to the prom. Both were so full of energy!! Then the next year having to watch your child die right before your eyes, with nothing you can do to help or save her. Literally a living hell.

I miss my sweet, precious baby and want so badly to hug and hold her. But I do know that she is with me wherever I go and doing with me whatever I do.



Work has kept me extremely busy over the last several months. I don't really have much time to myself, although I've been trying to make time and do things I've always wanted to do. I can hear Amanda telling me now, as she used to, "Mommy, why don't you do anything for yourself? Stop worrying about me and go have some fun!" So I try.

Spring is here now, time to plant flowers and make the yard look pretty. I always get the same flowers every year. Ones that Amanda picked out. Ruby slippers was one of her favorites. She picked out the colors of my tulips as well and those have begun to pop up.

Summer is right around the corner with lots of things planned. A trip with the family to Wisconsin, Hershey, PA, four-wheeling, maybe some horseback riding and of course the pool, and hopefully some trips to Maryland to visit my dear friend Virginia.

Happy Easter to everyone.

Tuesday, September 6, 2005 8:08 AM CDT

Happy Birthday to my sweet, precious angel. Sweet 16. Oh how she wanted to drive so bad. Little did she know grandpa had planned on taking her out over the weekend to buy her a brand new car, some sort of Honda she had been wanting for the last couple of years.

It's been a little over five months now, and it still seems like it was just yesterday that my baby girl was taken from me. How unfair for us both. It just breaks my heart to see a child who had so many dreams and so much ambition in life to have it all taken from her. She had turned into quite the young lady.

The autopsy report indicated that she had several new lesions in her abdominal area. Neuroblastoma had infiltrated into the veins and arteries in her liver. The NB had eaten away at the walls of the veins and arteries which caused them to erupt which led to her hemorrage. This was the official cause of death. Also indicated in the report was that after all the painful treatments she had been through with treating the NB in the brain, spinal fluid, and spine itself, there was no evidence of NB anywhere, and also no damage to her brain from any of those treatments. If that isn't a real kick in the butt!!

I guess it's been awhile since I've updated. I've been to Canada with my parents, and to Maryland twice. The first time I went to Maryland, I spent a week with Jay and Virgina, which was the week before he passed. Then I returned the following weekend to attend his services. My best friend Beth was generous enough to drive me there and she went to the services with me as well. We're looking to go back and visit with Virgina some time in October or November, hopefully.

The week before I went to Canada I went four-wheeling with some friends and had a blast. We went down to Wayne National Forest riding and things were going well until we hit a tree. We came flying around a curve, made a jump, and apparently had lost control. This is what they tell me anyways. I don't remember any of this. I just know that I woke up lying on the ground in some weird position that the average person couldn't get into if they tried. They took me to the ER and checked me out and I was very lucky with only a sprained ankle, a small knot on my head, a couple of scrapes on my shoulder and some pretty good size bruises all over my legs. And the driver walked away without a scratch. Perhaps I should do the driving next time. We haven't been lately, it's been way too hot to go. By the time you get all of your riding gear on including your helmet, you're sweating like there's no tomorrow, even in 70 degree weather, so there's no way I want to go when it's 90 outside.

I went camping over this past weekend with my parents at Deer Creek State Park. It was very nice. We went to the beach for a little while on Saturday and on Sunday we played some putt-putt. It was nice to sit and relax and pretty much do just nothing. My father's Crohn's disease has kicked into high gear and is causing him some problems. Hopefully, we'll be able to get that under control before too long.

I also spent a majority of my summer at the pool every day. I don't think I've done that since I was a kid. I just wish Amanda could have been there with me, she loved to swim.

I went back to work at the end of July for the company I used to work for. The gal that I trained upon leaving the company last year had put in her two weeks notice in June so they called and offered me the position. I didn't really want to go back to work, and still don't want to go there, but it needed to be done sooner or later.

Thanks to everyone for continuing to check in on me, and thanks to those who continue to email. I'm not ignoring you, just sometimes I'm still at a loss for words.

Vicki

Friday, May 27, 2005 9:44 AM CDT

As I was sitting here this morning, checking the websites of all of the children I have met over the last two years, I realized I should probably give a brief update. I get lots of emails from many mothers who wonder what I am doing, and I don't always respond to them.

I went to visit my mother on Mother's Day. It was an extremely difficult trip simply because it was the first time I had been home since returning from NY, and making the trip without Amanda was hard. I thought twice about whether or not to go, only because I didn't want to go without Amanda, but as long as I am able, I will not let my mother spend that day alone. Life is too short and too precious. As far as my mother, I think she had a pretty good day. Of course I gave her a gift that made her cry. I gave her a Thomas Kincade prayer box that plays Amazing Grace. And as far as myself, I couldn't wait until the day was over. Mother's Day with only memories of my precious angel just didn't seem like it was good enough, but I made it through.

I'll be heading to Cleveland this afternoon to spend a few days with my brother and his family. They actually live a little east of Cleveland and he owns quite a bit of property, most of which is wooded. I'm not looking forward to this trip either. Amanda always loved going up there, especially to ride the four wheeler through the woods and getting all dirty from the mud splattering up. I'm sure I'll take off through the woods for her, and in some way, I'm sure she'll be right there with me.

Thanks to all of you for your support and I hope everyone has a safe and happy holiday weekend.

Tuesday, May 3, 2005 6:23 AM CDT

I guess I haven't updated in a while because I don't know what to say. I could speak endlessly on how much I miss Amanda and wish she were still here (physically) with me. She was definitely the light of my life and I find it's been very difficult to make sense of my life without her, something I never dreamed of doing. It's very hard to get out of the habit of purchasing something at the store that I know she would like, especially shoes. She loved flip-flops and slippers the most, but was always certain to have shoes that matched every outfit. I remember her going off to school wearing her pajamas with her fuzzy flip-flop monkey slippers. She didn't care what other people thought as long as she was comfortable, but most would end up complimenting her.

I've boxed up some of her things and just can't seem to get the energy to finish the task I've started. Everything I see and touch brings back some sort of memory, which I like because it makes me smile, but at the same time, makes me sad, especially when I think of her plans she had for the future.

My good friend Chris gave me a Snowbunnies music box that plays "You are my sunshine". It sits beside Amanda and I play it every morning, usually with tears streaming down my face. Another friend of mine, Barbie, sent me the most beautiful bracelet. Barbie was the flight attendant on the plane we took through Corporate Angel Network. We always took the Limited shuttle to New York. Barbie owns a custom jewelry shop in Dublin and she had made me a bracelet with Amanda's name on it, the clasp is a heart, and it has an angel charm dangling from it. And yes, Barbie is her real name. And little Joshua's mommy, Christine, had gone shopping in Augusta one day and found me a bracelet like the yellow live strong bracelets, only with the name Amanda printed on it, and it is multi-colored instead of yellow. Thank you all so much!!!

Mother's Day and my birthday are just around the corner (Sunday and Monday). I'm not looking forward to either of them, but I'm sure I'll manage, I always seem to. Everyone keeps telling me how strong I am and that I have come through this with amazing strength and courage and that I will be fine. I know deep down inside that they are right.

One thing I'll mention is that when a group or an organization brought dinner in to the RMDH in NY, it was always appreciated. Sometimes it's difficult to cook in the kitchens, or you just get tired of eating out. My friend Beth and I took dinner to our local RMDH this past Friday evening, and this is something we plan to continue to do once a month. Our RMDH is much smaller, we only needed to serve 50, but it is only one small way that we have begun to give back. Other plans are being made and I will post them as they come together.

Thank you so much for all of your cards, prayers, and gifts. Words will never be able to express how grateful I am, I love you all.

Thursday, April 14, 2005 1:38 PM CDT

It was such a gorgeous day here this past Sunday during Amanda's memorial services, sunny and 77 degrees with a light breeze. I couldn't have asked for a better day. I thought it was ironic how the day she had passed was cold and rainy and just plain yucky, and the day I chose for her memorial service was so beautiful, just as she was. The balloon release was awesome!! It was so pretty, I couldn't believe it. Of course I cried and cried and refused to let go of mine. It took some persuasion from several people before I finally let go. Balloons were also released in her memory in New York, Maryland, Colorado, Nevada, Hawaii, and Japan. I think there might be another state, I don't remember. How very special for her.

Tomorrow will be two weeks that she has been gone and it just doesn't seem to be getting any easier. I miss her so much and just want to hug her so bad, we had such a close relationship which I am thankful for, but missing it something awful. It's very odd to not have to go to the clinic every day or go to the school to take her something or pick her up from somewhere.

I have been trying to keep myself busy with some other ideas I have had, which I'll post later as more details become available.

Words just can't express the many thanks I have for all of you. So many of you are very dear to me and others I have never met, I just can't seem to say thank you enough to all of you. The many cards, messages, emails, and words of wisdom are appreciated so much.

I'll leave you with something I wish to share from Amanda's services:

Fill not your hearts with pain and sorrow, but remember me in every tomorrow. Remember the joy, the laughter, the smiles, I've only gone to rest a little while. Although my leaving causes pain and grief, my going has eased my hurt and given me relief. So dry your eyes and remember me, not as I am now, but as I used to be. Because, I will remember you all and look on with a smile. Understand, in your hearts, I've only gone to rest a little while. As long as I have the love of each of you, I can live my life in the hearts of all of you.

Tuesday, April 5, 2005 10:48 AM CDT

I am still at the RMDH in NY and will not be home until Friday morning. Amanda was taken to Rosemount in Elizabeth, NJ for cremation and she won't be ready to go home until Thursday. I just refuse to leave without her.

All of the family has now returned to Ohio. All of them offered to stay and help with cleaning the room and such, but this is something I feel I need to do by myself.

When my parents finally got home last night, someone had set up a memorial in the front of the house in the flower bed. Mom was crying really hard, she said it was just beautiful.

The amount of support from everyone I know has just been so overwhelming, even from those I wouldn't have expected. It has really touched me and made me realize how much she touched the lives of others.

Family will receive friends at Schoedinger East Chapel, 5360 E. Livingston Avenue, Columbus, Ohio 43232 on Sunday April 10, 2005 from 2:30-5:30pm. In lieu of flowers, please send donations to the Amanda Jeffries Memorial Fund at any Huntington National Bank, or through Schoedinger Funeral Home.

There will be a balloon release in her honor at 2:00 on Sunday afternoon. I have chosen the balloons to be in her school colors, purple and gold. I will release fifteen white balloons to represent each year I spent with my angel. Several people that are unable to attend the services in Ohio informed me that they also would release balloons in her memory. What truly special people you are.

I can't express my thanks enough to all of your wonderful messages and prayers. You really have no idea how much it means to me.

Sunday, April 3, 2005 5:54 PM CDT

Please note that the time for the services for Amanda has changed and I had the date wrong. It will be Sunday April 10 from 2:30 to 5:30pm at the Schoedinger East Chapel, 5360 East Livingston Avenue, Columbus, Ohio 43232.

I will post again soon.


Thank you for all of your support, kind words, and prayers.

Saturday, April 2, 2005 4:32 PM CST

After several hours of labored breathing, Amanda went into cardiac arrest in the early morning hours on Friday. After CPR and stabilizing her, they transferred her across the street to the PICU at New York Presbyterian. Her blood pressure was being stabilized only by medication. Eventually, she was at the maximum dose to maintain her blood pressure, so it was up to her own body to keep it going. She was bleeding internally soemewhere and was too unstable to perform any tests to find out exactly where. Upon transferring her to Presbyterian, her hemoglobin was at 3.0, and after receiving four units of blood in four hours, it had only went up to 5.0. At 2:38 in the afternoon, she finally went to rest. She did not experience any pain whatsoever, and it was very peaceful for her.

Calling hours will be held at Schoedinger East Funeral Home, 5360 E. Livingston Avenue, Columbus, Ohio 43232 on Sunday April 9 from 2-5pm. Private memorial services will be held for family only earlier in the day.

Thank you to everyone for your kind words and prayers during this difficult time.

I will post again soon.

Friday, April 1, 2005 3:54 PM CST

Just a quick update to let you all know after some complications early this morning, Amanda is no longer suffering and she has become an angel herself. She passed on at 2:38 this afternoon. I will post details on funeral services as they are made.

Wednesday, March 30, 2005 2:54 PM CST

Sorry for the delay in the update, things have been a little crazy here. So, Wednesday morning last week Amanda woke up with an upset stomach and a very small fever. I thought perhaps it was a virus and that we should just let it ride itself out. When she woke up Thursday morning, she began with diarrhea and vomiting. She was schedule for an MIBG injection at 2:00 that afternoon so I though we would at least try to go to that. On the way up in the elevator at the hospital, she got sick, again. I decided at that point I should probably just take her on up to the clinic.

Once we got to the clinic they got her into a bed right away and began doing blood work. She had a small fever and needed platelets and came down with a sudden, sharp headache. They were going to admit her, but we talked them out of it since Diana was flying in that evening. After a couple of hours, Amanda decided she thought she would be more comfortable staying overnight so we went ahead and admitted her. Much to my surprise, her blood cultures came back positive, so I knew we were in for the long haul. The MIBG was cancelled and her CT that was scheduled was cancelled as well. I really didn't think much of the situation, we've been through this before, until the doctor that was on the floor over the weekend began telling me things I didn't want to here.

He told me that all of the problems she was having was due to the tumor activity on the lining of her brain. He then proceeded to tell me that the doctors were "grasping at straws" as to how to treat her. Her electrolytes were so out of balance from all of the "getting sick" that she was doing from both ends it was unreal. Magnesium and phosphorous and potassium were at dangerously low levels. Of course after hearing these things I was horribly upset and lost most of my sleep and cried much of the weekend. He also informed me that her LDH had gone up to about 1400. Not such a good number.

By no means am I a doctor, but I thought maybe if the diarrhea would stop, her electrolytes would balance, and then the nausea and vomiting would stop as well. The doctor disagreed and insisted it was tumor activity, so I told him to do and MRI and prove it to me. Now, I am not oblivious to her situation. I know she has disease in her brain, and I know what symptoms to look for. But I am also her mother and I know her best. The doctor refused to do the MRI. Within a couple of days, the lomotil stopped most of the diarrhea, her electrolytes are now balanced, and she is beginning to tolerate a soft diet. Lots of baby bites, but nutrition nonetheless. Not to mention she had a CT done on Monday. Preliminary results show that some areas in her head and eyes have improved, and the other areas are stable. At this point, I couldn't ask for much more. I'll take stable and better compared to the alternative.

That's not the worst of what happened while she has been inpatient, I'll continue on the next entry. I just wanted to give you all a quick update. We will be discharged tomorrow evening and then coming back into clinic early Friday morning so she can get her vanco and two units of platelets before flying. My brother is flying us into Cleveland so we can stay with him for the weekend. Neither one of us can wait, it's been a long time coming.

Please keep praying for Amanda and that there will be something out there that can help her. We are looking at all options at this point. I've been told that only a couple of options remain, and two of them need approval and I can only keep my fingers crossed that she will get approval for one of them since she is pretty much platelet dependent. I'll go into more details later.

Please sign the guestbook and thank you for your support.

Thursday, March 17, 2005 9:50 AM CST

Radiation to her cheek is finally over!! Now that radiation is done, we get Tuesday and Thursday off. I think we'll find this as a nice reprieve since we have only had one day off from the hospital since we got here in December. We will need to go to clinic on Monday, Wednesday, and Friday for a finger stick to check her counts.

Amanda has been feeling pretty good. Not really too much pain anywhere at the moment. We are noticing that the day after she does a lot of walking, with or without her walker, she does seem to have a bit of back pain and muscle soreness in her legs. But we are hoping those things will go away as she loses her steroid weight, not to mention she is beginning to use a lot of muscles that haven't really been used for a while.

Her liver functions were checked on Monday and those are just fine. I'm not real sure about whether this new chemo she is on is doing what it is supposed to do. Her ALT was down compared to the previous from two weeks ago, but her LDH had increased some. Apparently it wasn't enough for the doctors to be concerned, so perhaps I shouldn't be either, you just can't help but wonder.

Mouth sores have really done her in this time. She never had mouth sores in the past with any of the chemo she's done, so this is something new for her. Dr. Wolden said she could pretty much guarantee that she would get them, and she was right. She can hardly open her mouth to talk, it hurts so much, and she isn't eating all that much, but she does tell me that they are getting slightly better as each day passes. I remember one of our nurses at home had told us some kids get mouth sores so bad that it looks like raw hamburger in their mouths. I understand what she means now.

Dr. Modak spoke with me yesterday about having Amanda particiapte in a clinical research study involving a "new" antibody (8H9). This is the same antibody that she had injected to her spinal fluid. They are now wanting to test to see if it would benefit the same way as the 3F8 antibodies. The research involoves receiving the antibody over 80 minutes and then having numerous blood draws and scans done to track the antibody in her body. Labaratory results show that the 8H9 attaches itself to the tumor cells, so they want to test the theory in humans. If they are successful, they are looking at possibly opening up a new clinical trial with this in about a year. It is about a 24 day process, with most of those days only involving taking the medicine that protects the thyroid. Actual clinic time is approximately seven days. I talked to Amanda about this and she said she is willing to particiapte. Perhaps if she is still dealing with this a year from now, maybe it could benefit her, and on the other hand, if it doesn't benefit her, it could possibly help someone else someday.

Friday, March 11, 2005 6:42 PM CST

Only two more days of radiation left to her cheek/jaw area. She doesn't have to do these last two days, Dr. Wolden said she scheduled them for "insurance" purposes, but Amanda and I decided we should be on the safe side and go ahead with them anyways. When we seen Dr. Wolden on Wednesday, she said the tumor in her cheek is gone! I was so glad to hear that. She is just dealing with some mouth sores now from the radiation, and a little bit of dry mouth along with some loss of taste.

Her back has been feeling pretty good, no real complaints there. She has had a couple of headaches over the last couple of days, which is a little scary, but the doctor said to just keep an eye on it. It could be due to her new chemo or the decrease in her steroids. Which, by the way, we get to decrease again, so she is almost off of them again. She has noticed that her pants are beginning to feel a little baggy, which is good. I'm sure her walking will be much easier for her once she sheds a few pounds.

They won't schedule any dates for scans yet until she is at least two weeks out of radiation. So maybe by the end of the month, if she continues to tolerate this new chemo drug well, and doesn't have any problems in the meantime, we may get to come home. To the best of my knowledge they haven't put any other children on this new chemo, so they aren't quite sure what to do. I had to ask them today to check her liver functions since that's what I read on the patient information leaflet, so those will be checked either Monday or Wednesday next week.

Tuesday, March 8, 2005 6:23 PM CST

Over the weekend, we were pretty lazy. No visitors this time. Amanda has done well with no back pain since Saturday. She has had a little pain near her tail bone, but that seems to depend on the activity that she has been doing. For the most part, it's pretty good. When we went to the hospital on Monday, she wanted to take her walker instead of using the wheelchair, so I let her. After walking around the hospital all day, she then walked the five blocks back home using her walker. I was so excited and proud of her. I can't remember the last time she's done that much walking. Her feet are pretty swollen though so we need to watch how much walking she does do, but it's nice to see. When we went today, she wanted to do the same thing. To my surprise, she was walking at a little bit quicker pace. We were going to walk back home, but since it was raining, we decided to take the van back.

Five more days of radiation to her cheek/jaw area and then she will be done. Her first thirty day cycle of the erlotinib will end on March 31 so we'll see what happens. They haven't talked about doing any scans at this point, but they said perhaps when she has finished the first month, she will have scans.

The rest of the week she just has radiation and finger sticks to check her counts on Wednesday and Friday. I'll post again later in the week.

Saturday, March 5, 2005 12:38 AM CST

Radiation to Amanda's head is now finished, finally! She has seven more to go on her jaw/cheek area. Dr. Wolden looked at her cheek on Thursday and said the tumor has shrunk considerably, what a relief!!! The pain in her back has subsided which is a blessing, I hope it stays gone. She did have some pain in the tailbone area Friday morning, but we seem to be finding that when she doesn't sleep well at night, she has pain in her back somewhere the next day. She woke up this morning with no pain anywhere. YEAH!!!

She began taking the erlotinib on Wednesday, and so far, there haven't been any side effects. She did receive a platelet transfusion yesterday, those continue to struggle. Her hemoglobin and white blood cells are holding. She has started to lose her hair from radiation, so we are considering shaving it off so she doesn't have such a mess to deal with, we'll see.

Thursday Dr. Kramer sent her down to radiology for a chest x-ray. She's had some chest congestion for about three weeks now. Although they say she isn't contagious, I don't want it to turn into pneumonia, so I told the doctor Thursday that she needed an antibiotic. I had been arguing with them over this for three weeks now, and although I didn't think she had pneumonia, I do know from her having this in the past that the only thing that will take care of it is an antibiotic. So since she was running a low-grade fever off and on, they finally gave her some zithromax. Her fevers are gone and she is feeling much better and the chest congestion is almost gone as well.

A nice surprise came in the mail for Amanda last week. When Amanda was younger, my grandmother (Joan) had made quilts for both of the great-grandchildren. I have been looking for Amanda's for quite some time and can't find it anywhere which just broke my heart since grandma does such beautiful work. Apparently my mother mentioned this to her some time ago. In the mail last week was the most beautiful quilt I have ever seen. Amanda was so surprised and just loves it to pieces! She just loves the colors, it will match her room, and it also has her name in the corner. Thank you grandma Joan!!!

Thank you to all of Amanda's Angels for your continued support and prayers. Please sign the guestbook.

Wednesday, March 2, 2005 1:54 PM CST

The remainder of last week was relatively uneventful. Amanda's platelets were low on Friday so she did have one unit transfused. On Thursday evening, my good friend Beth flew in to stay with us through the weekend. It was quite hectic getting her here with the snow. Her flight was originally scheduled to leave Columbus at 7:30 pm, and it didn't leave until around 8:45pm, which wasn't too bad considering she was told to expect to depart around 12:30am! Both Amanda and I truly enjoyed her stay with us since we hadn't seen her in a while. It was very nice to have a "support" person here for me, and at the same time, Amanda just adores her. It was really refreshing considering neither Amanda nor myself have really been too much in the "joking" mood, so when Beth began to act silly and stupid, we joined in. Amanda made the following comment to me on Sunday evening, "Mommy, I haven't heard you laugh like this in a long time, I'm glad you're having fun." This comment made me step back and look at myself and realize just exactly what Amanda sees in me... the worries, concern, and overall stress that comes with this type of situation. Then I thought maybe this is part of the reason for why she is so quiet at times, like I am, when I think about what they (the doctors) are doing with her and what will come in the future, so I've resigned myself to going back to how I used to be, taking things one day at a time, and stop the questions of "What if...?". I need to be happier for Amanda right now, if she sees that I am happy, she will be too. Amanda and I have always had an excellent mother/daughter relationship, and even more so since her diagnosis, I just didn't realize the different ways my actions and reactions to things impact her.

Enough babbling...her counts on Monday were too low to start the oral VP. So the new plan is to start a new chemo called Erlotinib. This chemo was just approved back in November for lung cancer, and has also shown promise in treating colon and pancreatic cancer. It supposedly works the same way as antibodies do, where the medicine blocks a marker on the tumor cells and prevents them from growing. She will take one pill a day (150 mg) every day unless she shows disease progression. If there is no disease progression and she shows improvement, she will continue to take this in the absence of unacceptable toxicity. Side effects are supposed to be minimal, no nausea or vomiting, not even low blood counts. The biggest side effect seems to be a rash which appears approximately 8-10 days after beginning the chemo, and then subsides once the body becomes used to it. They will also have to monitor liver functions since this chemo is metabolized mainly through the liver.

Her last radiation treatment to her head will be tomorrow, and she has nine more to do on her jaw/cheek area. Her headaches have completely gone away and the inside of her cheek is no longer causing any pain either. She does have an MRI scheduled for her spine on Friday evening, but there is a possibility that Dr. Wolden will cancel that simply because her pain seems to have subsided. And the good news there is that there is only one small area that has had the maximum dose of radiation. So, if necessary, she could have more radiation to the rest of her spine.

Amanda's good friend and prom date from last year, Jay, was hospitalized Monday evening. Please pray that Jay and his family will have the strength to endure what is handed to them.

I have tons more to write but I am out of time. I will try to post later in the week. Please sign the guestbook and pray that Amanda's new treatment is what we have been looking for.

Wednesday, February 23, 2005 12:23 AM CST

Sorry it's been so long since I've updated, as always, when things happen, they happen quickly and you just feel like you're spinning around in circles. Mom's flight in on Saturday went smoothly, and Amanda and I were both very happy to see her. We both had a couple of months worth of picking on her to make up for, and it was the happiest I had seen Amanda in a long time. Amanda had been seeing the "spots" in her eyes for the last couple of days and on Sunday evening she went through a very brief episode of where she couldn't see out of her right eye at all, along with some absolutely horrible headaches and upset stomach, which we had been telling them about for a week. She had totally lost her appetite and wouldn't eat hardly anything all week. Knowing I had to fly out Monday morning, I instructed mom to let the doctors know first thing in the morning. I didn't see any sense in taking her to urgent care since her vision had returned and knowing how urgent care is here.

My flight home Monday morning went well. I think I arrived in Columbus around 10am and then went home to take care of some things before leaving for Mansfield around 12:30. Eric was kind enough to pick me up at the airport and to drive me to Mansfield, which I was glad for. I was a lot more exhausted than I thought I was. He told me to just go to sleep in the car, which I absolutely hate doing no matter who is driving, and I refused. But before I knew it, I was sleeping peacefully and we were almost in Mansfield. After taking care of some things in Mansfield, he took me into Crestline to see my grandparents and my father, which is also where I grew up. It was very nice visiting with my grandparents, I love them both dearly and don't get to spend nearly enough time with them. Grandma was kind enough to have made dinner and dessert for us, which I would never pass up. She is the best cook!!! Especially when you've been in New York for so long and miss the "home-cooked" meals.

While at grandma's I called New York to check on mom and Amanda. Mom said that after they spoke with the doctor, they called in a neurologist who did some quick testing and then sent her for an MRI. The MRI showed several lesions on her brain, but the one affecting her the most was the spot she's had on the back of her head since the beginning. The same one the radiation oncologist at home refused to radiate, which is why we don't do radiation there anymore. Radiation to her head started this past Friday and will run for 10 treatments.

Not only does she have these areas to worry about, she also has a tumor in her cheek that has also spread and kind of wrapped itself around her molars on the right side. I guess the good thing out of this is that it's not in the bone, soft tissue only. Radiation for this area will start tomorrow and run for 14 treatments.

After losing 15 pounds in two weeks from the almost final decrease of steroids, they increased her steroids from 2mg per day to 16mg per day due to the possible swelling that the radiation could cause to her brain. We just don't seem to be getting anywhere with those darn things. But at least we know this is temporary and won't be long term like the last high-dose of steroids she was on. As soon as radiation is finished she can start to decrease again.

Since last Friday, her headaches have almost completely subsided. She's had one headache since and it was very minor compared to the others she said. She has her appetite back as well, but she isn't over-doing it like she did before when she got on those nasty steroids. Her biggest issue right now seems to be the pain in her cheek. I just keep telling her to hang in there, radiation starts tomorrow and she should be feeling better by the weekend.
She did start to experience some pain in her upper back, which was the area we dealt with back in August. I am praying that this is from something else and not from disease, but deep down inside I think I know better. We were told to check with Dr. Wolden tomorrow to see if she can do more radiation in that area, but I'm afraid she has had the maximum dose, hopefully I'm wrong.

I know this is a lot to comprehend and sounds very ugly, but Amanda says that she would feel just fine if she didn't have any pain in her cheek.

I spoke with one of the doctors (who shall remain nameless) yesterday and asked about "quality of life", and for the first time, I didn't get a response, or even remotely close to an honest answer which really had me upset. I was told that they are finding more and more relapses in the central nervous system and that this is also the area with the least amount of research, so if radiation doesn't take care of it, there's not really anything else that can.

Now the conversation I had today with a different doctor gave me the complete opposite, more HOPE!!!! Amanda was asked today how she felt about this situation and what she wanted to do. She looked at the doctor and said, "You need to make this go away and make me better." The doctor looked at her and chuckled and said, "OK!" So it looks like she will do some oral chemo, VP-16, which was explained to me as stronger than irinotecan and topotecan, but still a maintenance chemo. It will run for 21 days and then she would have 7 days off. The doctor feels that this will do more than just keep her stable. In the meantime, he is checking into some other treatments for her, which he didn't elaborate on, but I am interested in hearing what those options are. The most difficult thing will be to keep this out of her central nervous system, we can handle the rest of it.

I will post again as I learn more. Please keep Amanda in
your thoughts and prayers and thanks to everyone who continue to support us, and please sign the guestbook.

Thursday, February 10, 2005 6:59 PM CST

Finally, radiation is done!!! Tuesday was the last day and her pain in her back has improved tremendously. She still has some pain in her tail bone area, but she is only needing pain medicine once a day, usually in the morning when she first wakes up. We are waiting to hear when physical therapy will start. I've heard that appointments for therapy are about a month out, so I've started having her exercise her legs and walk about the house more than she is used to. As soon as I think she is ready, she'll be hitting the stairs as well.

Dr. Kushner says chemo will not start next week, her counts are still too low from the radiation. Tomorrow she will get a blood transfusion, her hemoglobin was at 8.7 yesterday so I know she'll be even lower tomorrow when we go for the finger stick. He is talking about repeating her scans before chemo instead of after.

Mom is going to fly in on Saturday and stay with Amanda until Friday next week. I have to go home, there are things I absolutely have to take care of and those things cannot wait, so mom is the replacement. I will fly home on Monday morning and come back either Wednesday evening or Thursday evening, depending on what happens when I get home. Thanks grandma!!!

Diana is desperately trying to get back to visit with us, keep on saving Diana, we miss you and hope to see you soon!!!

Sunday, February 6, 2005 12:11 AM CST

Ok, so we didn't go home this weekend. Amanda has been in bed most of the weekend. She woke up yesterday morning with an upset stomach and literally slept all day. I think she was awake for about an hour when she had about half a cup of chicken noodle soup. This morning she is feeling somewhat better. She has a huge headache that just refuses to go away, plus she is slightly feverish. The last time this headache accompanied the fever she had a line infection. I'm hoping this isn't the case. She didn't drink anything at all yesterday, so today I'm pushing fluids. She's had two popsicles and some Propel water and I can see her starting to perk up just a bit. I went ahead and gave her some Tylenol for her headache, which I am not supposed to do just in case it is an infection. But with Amanda, nothing keeps her fevers down when she has an infection, so if it is something, her fever will continue to rise.

She has only two more days of radiation to her back, thank goodness. It seems like we've been doing this forever. Chemotherapy will start again on February 14, Valentine's Day. (Don't forget the flowers grandpa.) With any luck, we will try to get home Tuesday evening this week, and then we need to be back Friday evening. Not much time, but better than nothing, plus there are things that I need to take care of at home.

The decrease on her steroids has done her good. She has lost six pounds in the last week, and I know there's been even more lost since I can almost see her ankles again. We've been waiting so long for this to happen, and I think Amanda feels so much better knowing that her weight is dropping. I don't really believe that she was totally convinced it was the steroids until she noticed it in her ankles and seen it on the scale. What a relief.

Thanks to all for your support and please continue to pray for Amanda and please sign the guestbook. She loves reading the entries.

Saturday, January 29, 2005 2:12 PM CST

Hello everyone! Things are starting to look up a bit with Amanda, which makes me sooooo happy. She still has a long way to go, but she is well on her way. We got approval on Thursday to begin decreasing the steroids, FINALLY!!! We expect her to be totally off of them in about 6-8 weeks. Yes, it sounds like a long time, but considering she has been on them since August, 6-8 more weeks is nothing. She is no longer using the wheelchair at all to get around the room, not that there is a large area to walk around anyways, but at least she can do that now. She does walk to the dining room from time to time, but I don't push it. Her feet are still very swollen so I don't want her walking too much. She still is not allowed to wear socks because of the swelling, but since she has decreased the steroids a bit, I think they look slightly better than they did before.

Only seven more days of radiation to go. She only had to take her G shots for two days before her white count started to recover. Platelets and hemoglobin are holding right now, still dropping slowly because of the large field being radiated, but no drastic reductions like with chemo in the past. She has an area that the doctors are calling an ulcer, it's an open wound on her skin, it actually looks like a hole, that they say is also caused by the steroids so they put her on some heavy antibiotics and gave us some cream to put on it before it gets any worse.

I think she has a bit of a cold, but nothing serious. I told her no more walking in the mornings, we will start to take the van until she feels better. She has been really tired the last two days, and now I know it's because of her cold. No fevers as of yet, and hopefully there will be none period.

I forgot to mention when Diana came to visit she brought something with her from the school. It was a Certificate of Academic Excellence for the second grading period. YEAH AMANDA!!! KEEP UP THE GOOD WORK!!! I don't think I'll ever be able to put myself in her shoes and fully understand how she can go through what she does, knowing she feels how she feels, and then be able to keep up her grades at the same time. Part of me thinks it is her way of passing the time and to keep her mind off of what she is going through. The other part of me says, yes, this is my daughter who has always been just as determined at getting what she wants as I have, and is fully working towards those scholarships to help her through medical school since she has wanted to be a pediatrician since age 5. I am very proud of her.

I guess as far as getting home is concerned, our goal is for next weekend, maybe. My father, the farmer's almanac guru, is suggesting that there is going to be an ugly winter storm that weekend, so I guess we'll see. Regardless of whether or not we can go home, it will still be my goal to get Amanda up and moving around even more than she is now. It's time.

Please continue to pray for Amanda's healing and recovery and thank you all for your support. We love you.

Wednesday, January 26, 2005 1:17 PM CST

Amanda was discharged from the hospital really late in the evening. We took a taxi back from the hospital which was difficult since she couldn't really walk all that well, but it worked. Upon discharge the instructions they gave regarding the side effects were to administer no more than 3 of one type of medicine and then move on to the other kind if the first one didn't work. The second med was a prescription which I didn't get filled because all of the pharmacies were closed, unless I wanted to walk further, which I didn't since I was tired. But, she woke up at 2am having more side effects and we were awake until 5am. I had already given her three tablets of the first medicine like I was instructed, and figured I better find a pharmacy that's open 24 hours. So at 3am I went to the pharmacy at 74th and 3rd to get her pills that I didn't get before. Once she took her prescription pill, her side effects subsided and she hasn't had any problems since.

Her radiation is going well, we seen Dr. Wolden today and she informed us there are 9 more days left of radiation. She feels very strongly that this is working since Amanda can move a little easier now and her pain isn't constant. She was taking her pain meds every 3 hours and she is down to every 4-6 hours, depending on how she feels, plus she is no longer taking any pain meds throughout the night. She thinks that we can begin to decrease the steroids starting next week sometime, but is leaving the final decision up to Dr. Kushner. She also mentioned doing some physical therapy once treatment is done.

Yesterday platelets were 14 and hemoglobin 9.5 so she was transfused, one unit blood, two units platelets. Today platelets were much better at 73. What a nice number. Yesterday her white count was at .8 so she started G shots and today they are up some so she is beginning to recover somewhat.

It's so much easier pushing her in the wheelchair now that the snow is cleared off of the sidewalks and the corners of the streets, which is really where the big problem lies. She did laugh at me an awful lot today because as I was crossing the one intersection I had to push her through the slushy stuff. Of course I was wearing the sneakers with no backs on them (yes dad, these are the kinds of shoes you wear in winter, and no, you didn't teach me any better). :) I got Amanda through the slush without any problems but proceeded to step right into it and ended up with one shoe full of snowy/slushy stuff. Amanda thought that was pretty funny, and I didn't care since it made her laugh.

I don't think we will be going home for the weekend unless some miracle happens and her walking becomes really good between now and then. She is beginning to walk around the room a bit and I no longer need to assist her with her clothes when she uses the restroom, so yes, she is getting stronger. Maybe next weekend.

Thank to everyone for your continued prayers and support.

Sunday, January 23, 2005 3:02 PM CST

This weekend wasn't so good for us, maybe I should have kept my mouth shut. Amanda finished her chemo on Friday with no problems. Her platelets were ok at 33 and her hemoglobin was 9.8. Hemoglobin needs to be above 10 for radiation to be the most effective, so they did transfuse one unit.

Saturday morning we woke up and had breakfast. We didn't do much of anything, just kind of sat around and relaxed for a while. We didn't want to plan on going anywhere since a blizzard was forecast, expecting the usual strong winds and up to a couple of feet of snow. We went down to the computer room for a little bit and then up the kitchen and had some lunch. Shortly after lunch Amanda started having some side effects from the irinotecan. For all of you who know about irinotecan, you know what I'm talking about. Needless to say, her side effects ran throughout most of the day and I was beginning to get worried about dehydration. I called the pediatric fellow on call and talked things over with her and she said she would call one of the docs on the neuroblastoma team. She called back about half an hour later and said to bring Amanda in, they were going to admit her for overnight observation and to hydrate her and give her some stronger meds that we didn't have at home.

My next problem was how I was going to get her to the hospital in a blizzard, in a wheelchair at 11:30 at night. I went in search of someone to help me and found one of my good friends, Mike, and explained the situation and asked if he would help. He jumped right up and said it was no problem at all. I am ever so thankful that he helped us. Once she got settled into Urgent Care, Amanda decided she was hungry and she wanted oatmeal and pop tarts so I walked back to Ronald, in the blizzard, at one in the morning. I can remember thinking to myself that I must be crazy going out at this time of night in the middle of a winter storm to get oatmeal and pop tarts. But, mothers will do anything for their children in situations like this.

Amanda is feeling much better today and we are currently waiting on discharge papers. The sidewalks are clear but the roads are still sloppy. Actual snow fall was about 14 inches. Next week all we have to worry about at this point is radiation. I should be getting some results back on ALT and LDH levels. And depending on how her counts seem this week, we may try to go home for the weekend. I will keep you posted.

Thursday, January 20, 2005 1:16 PM CST

What nice surprises the weekend held for us! I had been trying to get Amanda's best friend, Diana, here to visit with her for several days but just couldn't find airfare cheap enough. After speaking with Diana's mother, we decided we would go for a future date since prices were cheaper. Diana was devastated, we were wanting to surprise Amanda. Even my wonderful friends at the school, Donna and Jenny, were trying to look for something to get Diana here. Saturday evening Diana called me all excited and said that her father's employer had given him a "bonus" to get Diana to New York to visit with Amanda. She insisted I go look for a flight immediately, she wanted to come out as soon as possible. When I went to look for the flight, it was way out of our price range since it was last minute, so I called the airline and they gave me the "special" rate. Diana flew in Sunday afternoon and stayed until last night! That was the happiest I had seen Amanda in a long time and everything was going pretty good until Monday evening when Amanda's back started hurting so badly she couldn't even walk to the bathroom, she had to use the wheelchair. The pain medicine was increased along with the neurontin but that didn't prevent Diana from seeing the pain Amanda was in. I know she would never tell me any different, but I could see from the look on her face that it was very difficult for her to see Amanda that way, but Diana is a trooper too and she jumped right in and helped me with Amanda any way she could. Amanda and I both hated to see her go, but she promised she would come back.

Monday's meeting with Dr. Wolden was good. She indicated that Amanda's radiation treatments to her lower back could last up to four weeks, but most likely will be just two to three weeks. The amount of disease in her spine is minimal, thank God. There are no masses, she referred to the disease as a "sugar-coating", and said she felt Amanda would feel like a new woman within two to three days after starting radiation. Dr. Wolden is going to wait to do the radiation to her head, first she needs to get the records from OSU since she has had some there at home.

Amanda finished up her last dose of temozolomide on Monday and will finish her last dose of irinotecan tomorrow, but we will still need to go to the hospital every day for the radiation. Her counts are slowly dropping, and all of the docs are saying to expect multiple transfusions (blood and platelet) over the next couple of weeks due to the chemo and since they are radiating such a large field in her back.

Her first dose of radiation was yesterday, and after just the one treatment, she could tell she was feeling better. The last couple of days she was literally in tears by the time we would get to the hospital, just from pushing the wheelchair over the cracks in the sidewalk, which can't be helped. On our way home last night, I hit a big bump really hard and apologized to her and she said, "That's ok mom, it didn't hurt." So Dr. Wolden was right, that new woman is starting to appear!! I thought, this can't be real, this kid is totally amazing!!! After just one treatment the pain is better? So I had to ask her and she said yes.

But the good news doesn't stop there. Last night was the first time she has slept through the whole night since August. She didn't get up to go to the bathroom, she didn't get up because she needed pain medicine, SHE SLEPT!!
Then when we saw Dr. Kramer today she gave us Amanda's latest ALT results, which measures disease activity somehow. I think normal range is something like 3-57, but don't quote me on that. Last week she was at 188 and this week she is at 83. Thank goodness they're coming down!!! They haven't tested LDH lately, but I'm anxious to see what that is.

Everyone have a good weekend, enjoy the snow Ohio!! I know most of you don't love it as much as we do.

Saturday, January 15, 2005 11:09 AM CST

Thursday we went in to talk with Dr. Kramer about the results of the MRI and what the next step for treatment would be. Apparently her MRI did not look good at all. Amanda is showing a lot of disease activity in her lower back, which explains the back pain and the pain she is having in her tailbone. The good news is that the areas which were radiated back in August (her upper spinal areas)continue to show no evidence of disease. They will be radiating the lower half of her spine as well as some areas on her skull, but I still don't have many details yet, her simulation appointment with Dr. Wolden is on Monday afternoon, so I will know more then.

Dr. Kramer's suggestion was also to begin the irinotecan/temozolomide combo again, five days for both. She started the temozolomide Thursday evening, which is double the dose she was receiving at home, and then she will begin the irinotecan on Monday for five days. She woke up vomiting on Friday morning which surprised me since she has never had any reactions to any chemo, even the harder, more stronger ones. But I wasn't totally convinced it was the chemo for reasons I won't discuss since it's kind of disgusting. Turns out that we think it was just a stomach virus and not the chemo, thank goodness.

Dr. Kramer is indicating that after radiation and after her counts recover from the chemo, we should be able to go home. We expect to return though for more scans, we just aren't sure when.

We hope everyone has a good weekend.

Wednesday, January 12, 2005 10:51 AM CST

Where to begin...shall I start with the good news or the bad news? Let's go for good news first. The 8H9 protocol is typically for two cycles, two injections each cycle. MRI's are done approximately 3 weeks after each cycle. And of course a number of blood samples and CSF samples are sent off to the lab for testing. After just one injection, Amanda's CSF is showing no evidence of disease. YEAHHHH!!!!!!!!!! Very good news, I didn't think I could ask for much more at this point, until...Dr. Kramer says we can't do anymore 8H9 treatments because her ALT numbers have increased since last week which means that the disease in the remainder of her body is no longer stable and has become active again. So once again, she is kicked off of protocol.

So here's the plan...she has an MRI this evening to evaluate disease in the lower half of her back since she has been having pain in that area. The pain is pretty much gone if she is sitting or laying down, but when she stands up it hurts to walk, so she has been taking morphine for the pain, which has caused her feet to swell. Dr. Wolden will review the MRI to see if Amanda needs radiation therapy. If radiation is needed, that will be done here in NY. The neuroblastoma team met yesterday afternoon and also indicated they think Amanda should go back on irinotecan, "maintenance" chemo. There are some newer treatments out there if she had enough stem cells. They like for you to have approximately 2 million, and Amanda has roughly 1.5 million.

I will be talking with the doctor tomorrow to discuss whether or not to do the radiation to the lower half of her back, and also to ask about other alternatives, even if that means we leave NY and go elsewhere. Regardless, we will either try to go home for the weekend, or if no radiation is needed, we will probably go home for good, or at least a while. She will be able to stop taking her thryoid medicines on Tuesday next week and we are also waiting on MRI results to see if we can decrease the steroids some more.

We thank God that he answered our prayers and rid her CSF of any disease and we continue to pray that he will do the same for the remainder of her body.

Saturday, January 8, 2005 7:34 PM CST

The treatment on Thursday went so smoothly you wouldn't even know she had anything. As expected, the doctors came in around one in the afternoon for the injection. The ommaya was accessed, (which did hurt by the way, we were told she wouldn't feel a thing), and they checked intra-cranial pressure, which was fine. They gave her the same pre-meds that they do before 3F8 treatments, to prevent hives, upset stomach, pain and such, which luckily put her to sleep so she slept through the whole thing. She was supposed to be admitted to the POU for the injection but they were in the middle of shuffling patients around so we didn't get there until around 7 in the evening. They went ahead and did the injection in the day hospital.

Once in the POU, she was immediately hooked up to check blood pressures, temperature, pulse-ox, and had some extra "wires" coming from her head to monitor the intra-cranial pressure on a regular basis. At this point she started to cry. She didn't like being hooked up to all of these things. Once LeeLee, her nurse, calmed her down, she was just fine. She started coloring and looking at her SAT practice book and it was business as usual.

She had a series of three scans, one was four hours after treatment, one at 24 hours, and one today at 48 hours to track the flow of the injection. Blood and CSF samples are taken at 5, 15, and 30 minutes as well as 1, 2, 4, and 24 hours. She will head back to the clinic on Monday morning for additional samples to be drawn of blood and the CSF. She will also have another CBC.

Her platelets have been holding steady since treatment which I am very glad to hear. Call me crazy, but I know when something isn't right inside of her, so perhaps even though this was a low dose of treatment, I can't help but feel that perhaps it has done some good. Next weeks dose will be five times as much as the one she just had.

Please continue to pray that her body will rid itself of this disease and that she can soon enjoy a healthier life.

Wednesday, January 5, 2005 5:38 PM CST

Let's try this again. I just finished typing an update and I lost it. This past weekend we just relaxed, Amanda and I were both tired. Sunday we went to the bookstore to pick up more reading material.

Monday we went into the clinic to see Dr. Kramer. She sent us down to nuclear medicine, where she met us later, to inject the dye for the CSF flow study. They did a set of scans right after the injection and then again four hours later. In between scans, we went back up to the clinic to take care of some other issues that needed resolved. We had to go back again on Tuesday morning for the third and final scan. Dr. Stock from nuclear medicince called me late yesterday afternoon and informed me that everything seems to be in place and we could go ahead with the treatment.

Today we went to the clinic so Amanda could receive a platelet transfusion. Her platelets had dropped down to 48 and they need to be 50 for this study so she just received a small bag.

Tomorrow we need to be in the clinic at 8:30 to begin preparations for the treatment she is doing. They need to do blood draws, admissions and such. The injection is supposed to take place sometime between noon and two in the afternoon. Apparently the 8H9 is unlike the 3F8, which is frozen and then thawed before infusing. The 8H9 is prepared the morning of since it is attached to a radioactive isotope which can cause the medicine to become less effective if not administered soon after preparation. They have also put Amanda on three additional prescriptions for this clinical trial. One is to block the thyroid from the radioactive material, the second is to replace the thyroid synthetically, and the third is to help protect the heart muscle and the thyroid. Pretty ugly stuff isn't it, confusing too.

She has actually been in a pretty good mood all day today. Eric is flying in this evening and will be staying until Sunday evening. This is a rare opportunity for us since airfare is typically so expensive. I finally found a price that was reasonable so he can come spend a few days with us, I know he hates being home alone. Mom and dad are looking after Amanda's puppy, Pepper. Thank you!!!

There's a possibility we may not be home for another few weeks yet. Amanda has been having some lower back pain which causes her some difficulty walking at times, so Dr. Kramer has contacted Dr. Wolden to have her look at the scans to see if she thinks Amanda would benefit from radiation. Dr. Kramer and I both agree that Amanda has always been extremely responsive to radiation therapy and we both think this would help, but ultimately the decision is up to Dr. Wolden. Regardless, I want to try and get her home for at least a couple of days at the end of next week.

Mom and Dad-Thanks for taking care of the puppy and thanks for the cookies and everything else, it's all yummy!!!!!!!!

Please continue to pray for Amanda's recovery and that this new treatment will help her and that it will go smoothly. She is only the third patient to do this.

Thursday, December 30, 2004 8:16 AM CST

Monday was a long day at the clinic. Amanda and I came in expecting to just have her blood test done, and then we ended up doing a bunch of other things. They are trying to avoid replacing her broviac so they are administering a drug into her lines and leaving it sit for a couple of hours. Hopefully this will dissolve the build up on her lines. They have been able to draw from them everyday this week, so it's looking good.

Tuesday morning we came in for platelets. Before transfusion they were 55 and hemoglobin was 10. The magic numbers for surgery were 100 for platelets and 10 for hemoglobin, so we had just squeaked by, or so I thought. After transfusion they did another CBC to make sure the platelet count was high enough, they were 105 which is what we had hoped for BUT her hemoglobin had dropped to 9.1 so we ended up staying for two units of blood.

Wednesday morning they had us scheduled to be in clinic at 6am and surgery at 7am. One of the nurses came to take her down to the OR waiting area at about ten after 7, and then they took her in about ten til 8. Her neurosurgeon came out to speak with me about 9:30 and said all went well. About an hour later recovery called down to the waiting area to let me know I could go up, Amanda had been asking for me. She looked good, her incision is much bigger than what I though it might be, but in a spot that should be well hidden once it heals and the hair grows back. She wasn't allowed to eat or drink anything for a couple of hours since it was a surgery to the head, invasion of the brain so to speak. She also wasn't allowed to get up to use the restroom, she had to use the bedpan. Once we got up to the floor and she was checked in, they allowed her to start taking small sips of juice and to walk to the bathroom. One of the neuro docs came in to check on her yesterday afternoon and was a bit surprised when he found out Amanda had already been up and walking. He seemed very pleased. They were giving her morphine and percocet, alternating them every 2 hours, for pain. The neuro doc said the stitches will stay in for about a week and to not wash her hair for 3-5 days. Under normal circumstances, she probably wouldn't care since her hair really isn't that long yet, but with this incision she has everytime she stands up it oozes something out, mostly blood so she has quite the mess on the top of her head.

She went down for a CT scan of her head to make sure the ommaya is in the right place, and if that looks good, she should be released soon so we can go back "home". She won't need to come back tomorrow for anything since the clinic is closed for the holiday. Monday morning we need to come in so they can do the dye study to make sure that the fluid goes to the right areas in her head and spine.

Happy New Year to everyone.

Saturday, December 25, 2004 12:59 AM CST

Merry Christmas to everyone. Amanda and I are both somewhat depressed since we can't be home with the rest of the family for the holiday, but at least her and I are together and that's what matters most to me. She took me to the store this morning and bought me a bag of strawberries and cream hershey kisses and a teddy bear for my "NY" Christmas present from her. We enjoyed a yummy breakfast at Ronald this morning and are looking forward to dinner later on this afternoon. Santa must have stopped by last night, there were presents outside the door this morning when we got up, and from what I understand he may be back later.

Amanda went for her pre-admission testing on Thursday. Platelets and hemoglobin are beginning to slowly drop and her LDH levels are slowly increasing. I keep praying that we can continue to buy her some time until treatment starts and then hopefully all will be better. Her blood draws can't be done through her broviac since it isn't working right so they have to stick her. It took two nurses, five pokes, and 25 minutes to get her labs drawn. Her little arms look like I've been beating on her. Then we learned they didn't quite get enough blood for the CBC or the PATT. She did the CBC again by doing a finger stick, and I begged and pleaded with Ursula for them to re-do the PATT on Monday to let her arms have a chance to "rest". She finally agreed.

Monday she will re-do some labs, Tuesday she will go to the clinic for platelets and possibly blood, depending on her counts, they need to be at a certain level for surgery. They will also let us know what time surgery will be on Wednesday, I've been told first thing in the morning, but no specific time yet. She will be staying overnight Wednesday and we probably won't get back to Ronald until late Thursday, just so the doctors can run all of the dye studies to make sure the Ommaya is in the proper place.

I hope everyone enjoys the holiday with their families. Lots of love to you all.

Saturday, December 18, 2004 11:48 AM CST

Flying out Tuesday afternoon was quite an experience. Our usual flight we take through The Limited was booked as well as all others that were available through Corporate Angel. Our wonderful friend Liz at Corporate Angel was gracious enough to set us up with a flight through Flight Options. We are ever so thankful for her, if it wasn't for her we wouldn't have got here. It was a much smaller jet that only seat seven and both of us were quite nervous. I was actually amazed that the flight went rather smoothly, except for the landing was a bit rougher.

Amanda had her tests done earlier this week and we have some results. Her MIBG showed no disease in her right lung and chest wall, which I purposely failed to mention previously. This was excellent news!! The areas in her shoulder and above her knee have gotten slightly worse, and other than her spine and tumor activity in her head, all is well. I was so thankful to hear this, we all know MIBG lights up every possible thing and I was so afraid she would light up like a Christmas tree since it had been such a long time since doing a stronger therapy. Low dose chemos typically don't do much for her, but this time was different, thank God. Her bone marrow results won't be back until sometime next week. Blood counts are good and have improved quite a bit in the last week so things are looking up.

We spoke with the neurosurgeon, Dr. Souwedaine, on Thursday about placement of the Ommaya, and we spoke with Dr. Kramer who explained all of the procedures and we signed consent yesterday as well. Pre-admission testing will take place on December 23 and placement of the Ommaya will take place on December 29, with an overnight stay in the hospital, along with some dye studies to be sure the Ommaya is in the proper place. At this point, the first treatment will be on January 4 and the second on January 11 if all goes well. Each treatment requires an overnight stay along with several tests of spinal fluid and blood along with a series of scans after each injection.

Amanda will be the third patient on this study so not much information was available with regard to effectiveness. The first patient did show improvement and the second patient won't be back until next week for the repeat MRI, but we remain positive and are hoping for the best with this. Once she finishes the second injection and the series of scans, we will be able to come home for about 3 weeks. Each week we are home she will need to go to the clinic once a week to have samples of spinal fluid and blood drawn for testing. The fourth week we will come back to New York for the repeat MRI and such. If she remains stable or shows improvement a second round will begin.

Happy holidays to all and we will keep you updated as information becomes available.

Tuesday, December 14, 2004 7:52 AM CST

We finally heard from Dr. Kramer last week. Amanda finally got approval from the FDA and IRB to participate in this clinical trial. We will be leaving for New York this afternoon. She has tests all day Wednesday and Thursday and we speak to the neurosurgeon on Thursday about placement of the Ommaya (the port that goes under the scalp that administers the medicine). Once we speak with Dr. Kramer and Dr. Souwedhaine I will know more about when to expect things to happen.

We will not be home for the holidays so we celebrated Christmas with my family this past weekend. My parents and my brother's family came to visit Saturday and we had our Christmas dinner and opened gifts and it was very nice. We took so many pictures!!!!! Amanda and I both hated to see my parents leave, she wanted them to spend the night but they didn't bring the dog so they had to go back home. My brother and his family spend the night which was nice since he lives in Madison (east of Cleveland) and we really don't see each other that often.

Amanda had a CT scan done on her head last Friday to check the status of disease up there. The doctors were afraid she might be feeling some pressure on her brain since her headaches have come back. Thank god that the test results indicated there is still nothing on or in the brain tissue!!! I was so thankful that there has been no change, her disease is currently stable up there right now and no indication of any new growths and the existing tumors have remained the same size. I'll take that anyday over the alternative.

I need to finish packing our suitcases so as soon as I get more info from the doctors I will pass it along to you. Thanks again to everyone who continues to follow our journey through this and thanks to all those who continue to pray for us. Please don't forget to sign the guestbook.

Wednesday, December 8, 2004 8:33 AM CST

The spinal fluid sample received by the lab in New York didn't have enough cells in them to properly run the staining tests so the only other option was to send bone marrow samples. She had her bone marrows done on Tuesday last week and they were shipped to NY. On Friday Dr. Kramer informed me that she did test positive for the protein which makes her eligible for this new clinical trial. The only thing we are waiting on now is approval from the FDA for Amanda to participate. Once we receive approval, we will leave for NY. Hopefully this will be any day now, we are more than ready to go. Amanda's headaches started again last Friday and she is very tired of having this pressure in her head. We are both looking forward to going to NY, it's been a while since we've been. Neither of us wish to be gone away from home over the holidays, but we will do whatever we need to in order to take care of this mess.

Thanksgiving was very nice, mom always cooks a good meal, and Amanda really enjoyed the time we spent there. Mom made her a new blanket to take to NY with her. It has her favorite characters, Pooh Bear and friends, all sleeping peacefully. It's very cute and Amanda just loves it. Mom made it a little smaller than her others since she loves to "hug" her blankie, so it's a "huggable" version, and much easier to pack. She always likes her grandma to make her blankets, she says they have "magic" in them that make her feel better.

Her counts were checked yesterday, platelets are slowly coming up (57). It's hard to believe that just a few months ago we didn't have hardly any worries and now it's almost constant. How quickly things change with this ugly disease.

We are hoping to hear from Dr. Kramer today. If so we will fly out soon I'm sure. Will give more details as they become available.

Tuesday, November 23, 2004 11:24 AM CST

We still haven't heard any results from the tests ran on her spinal fluid. Apparently the samples were overnighted to New York on Monday last week, but the lab didn't receive them until Thursday. Dr. Kramer said the staining would be done either yesterday or today. Hopefully we'll know by the end of the week.

Amanda is feeling a little better as each day passes. She hasn't had any headaches for quite some time now, which I am thankful for. When the headaches start I know something is going on up there. She had her counts checked today, we're hoping they will be good enough so that she doens't need any transfusions. Her weight remains at 137 which is good, at least she's not gaining any more, now her goal is to start losing a few pounds. Easier said than done with the holidays coming, and even more difficult to do when she can't really do much in the way of exercise.

We attended Holly's wedding last weekend. It was very nice, she had a very pretty dress. Tomorrow we are going to go to grandma and grandpa's and stay through Thanksgiving. Amanda would like to stay until Sunday, but there are things needing done here at home so I told her "we'll see". She very much misses her grandparents even though they are only an hour or so away.

Now to let you know what Amanda and I have been working on. Amanda and I came up with the idea to publish a cookbook. All of the proceeds will be donated to pediatric cancer research and stem cell research. These are both things that Amanda and I feel very strongly about and let's face it, if it wasn't for the research been done so far, she wouldn't be with us today. Amanda's job is to design the cover and come up with a title. I'll take care of the rest. It's actually a very easy project to do that doesn't take up too much time and also raises money for a good cause. So here's what Amanda wants from all of you: Please mail us your favorite recipes to publish in this cookbook, and don't forget to include your name since that will be printed along with the recipe. We would like to have all of the recipes in by the end of December so we can put things in order and ship them off to the publisher. It will take approximately 3 months before they will be finished. The cost of these cookbooks will be $10.00 and prepaid orders are accepted. If you choose to participate by contributing one of your family's favorite recipes, or if you wish to order ahead, please mail to Amanda Jeffries, 8331 Glencrest Drive, Reynoldsburg, Ohio, 43068.

Thanks so much for those that have already placed their orders and sent us recipes and Happy Thanksgiving to all!!!

Tuesday, November 16, 2004 12:10 AM CST

Test results are back from the spinal tap. Results indicate that the spinal fluid does have disease. I had a feeling it would be positive, but I was still hoping for better. Her last day of her two week chemo will be this Friday. She had another spinal tap done yesterday, and that fluid was overnighted to Dr. Kramer in New York. Apparently there is a new protocol that has opened that deals with disease in the spinal fluid, Dr. Kramer is the "specialist" on this part, at least that's what I'm told. The spinal fluid sent out yesterday will be tested for a certain protein. If she has that protein on her cells, she will be eligible for this new protocol.

Here's my understanding of how it works: First they place a port in the side of your head. This allows the doctors to withdraw spinal fluid instead of doing the lumbar puncture, and this also allows them to administer the medicine since it must go directly to the spinal fluid area. One injection will be administered, which is a combination I131 + 8H9 antibodies. An overnight stay is required for observation purposes. If the patient does well, a second injection is administered one week later. If things continue to go well, you can go home for four weeks with blood tests and spinal fluid tests to be done at home. Then you go back for a second cycle with repeat MRI's and all of the other tests. Keep in mind this only affects the spinal area and around the brain, it does not do anything for disease that is in the rest of the body. So we are keeping our fingers crossed hoping that she has the protein so she can get this treated. I should have those results by the end of the week.

Last weekend my mother and grandmother came to visit. We went to an arts and craft show at Amanda's high school. It was nice, we've been looking for a wreath to hang on the door for the holidays and haven't been able to find one we liked. Amanda picked one out at the craft show that she really liked so I bought it to hang on the door.

I'm guessing at this point she probably won't go back to school until after Thanksgiving. Her best friend's sister is getting married this Saturday so we will be attending that. She's very excited about going, and shopping for something to wear, of course.

I'll post test results as I get them and will let you know more details as I find out.

Thursday, November 4, 2004 10:58 AM CST

The MRI results were good and not so good. The tumors behind her eyes are half the size they were, YEAH!!!! BUT-the tumor on the brain is slightly larger. She also has some "floaters", which were described to me as cancer cells that are floating around the brain, but not yet seeded and starting to grow. We're not so happy about the floaters but very glad they haven't started growing yet. I can't help but be disgusted since the radiation department here didn't radiate the tumor on her brain. Something tells me none of this would've happened had they done what the doctor told them to in the first place. Maybe I'm wrong.

Chemo will start on Monday and she will also have a spinal tap done in the surgery center at Children's. Doc wants to check the spinal fluid to make sure there are no cancer cells floating around in there. We're hoping for negative results, but if for whatever reason it is positive, they can treat the cancer cells by injecting medicine into the spinal canal which would then circulate throughout the spinal fluid. He said this also requires a "series" of spinal taps. That's really all of the information I have on that right now, we'll know more later.

He is also going to have another CT done and a bone scan. She hasn't had a bone scan since June so I'm a little afraid of that one. Her broviac is going to be removed and a temporary pic line put in her arm to get her through this round of chemo. We'll discuss later what to do about the broviac replacement. Once the pic line is removed after chemo, look out swimming pool here we come!! I've always promised her I would take her swimming when her broviac came out, even if it was winter. Hopefully we'll get some time for this before the broviac is put back in.

Her progress reports came out this week for the second grading period. All A's except for Geometry which is a C. I'm certainly not complaining due to the cirumstances. I think she has done a wonderful job and I know her teachers wish that their other students would work as hard as she does. She even stays after school to catch up on things she misses when she doesn't understand them. She will be taking her PLAN test on Saturday. It's the practice ACT for college. I think she's a little nervous, but I told her not to be, it's just practice.

I'm going to take her shopping this afternoon and get her some new pants to wear. The ones she has don't fit right now. Maybe I'll get her some new shirts too since most of hers are so form fitting. I still can't wait to get her off of these steroids. I have a feeling it may be a couple of months yet until we get this other stuff under control.

I'll keep everyone updated as soon as we find out for sure what is happening and when.

Thursday, October 28, 2004 11:03 AM CDT

I took Amanda to the clinic Tuesday morning. Her headaches were very bad and the pain medicine I was giving her didn't help that much. I wanted her labs checked and for the first time I was hoping for low blood counts. I felt if her hemoglobin was low that would be the cause of her headaches. However, her hemoglobin was just fine. Then we tossed around the idea of her headaches being sinus related since she has had a few sniffles. The doctor said not to rule this out, this was probably the cause since the sniffles and headaches both started at the same time, but don't rule out the possibility of the tumor causing these headaches either. Dr. Klopfenstein gave her some stronger pain medication and said to check up with Dr. Ranalli on Thursday.

Today her sniffles and headaches seem to be better, still there, but better. She is only taking her pain medicine about two times a day, which is good compared to the other day. Her counts are ok, I've seen better but I'm not complaining since this is the first time she has been stable on her own without the aid of transfusions. The doc chose not to decrease her steroids again just yet, perhaps next week. Her weight Tuesday was at 125 and today it is 124. She's started riding the bike again and working her leg muscles on the stairs a few at a time. She will have an MRI next week on her head to assess tumor activity behind the eyes and on the brain, and then will probably go for more radiation (for the tumor on the brain).

I spoke with Dr. Kushner in New York the other day and explained to him what had been going on here at home, and what my intentions were when this next chemo cycle is completed. He indicated there are several options (clinical trials) to choose from but we can't discuss exactly which one just yet since we don't know the amount of disease activity currently present. You can't imagine the weight I felt lift off of my shoulders when he said he still has options for her. Although we love the medical staff here, I know the only options here are maintenance chemo and we need something else, especially since she doesn't respond well to chemo. We expect to go back for testing in December.

Today is trick or treat and Amanda can't wait to pass out the candy. She's doing very well in school and I still can't keep her nose out of her books. Tomorrow she is going to stay overnight at a neighbors house and do some "girly" things. She's very excited about that too. I hope she enjoys herself, she hasn't spent the night anywhere (without me) for over a year.

Next week, labs on Monday and Thursday and an MRI, and a possible consult with radiation.

Monday, October 25, 2004 11:47 AM CDT

Third time's a charm!! I think the computer is fixed this time, really. If I don't update within the next week or so then you know the computer is down, again.

Amanda seems to be doing really well. She still seems to be holding her platelet count on her own, counts were at 45 and 41 last week, so there weren't any transfusions. Her hemoglobin and white blood cells are amazingly good for just finishing up chemo. She hasn't even taken any of her G shots this time. She will see the doc again on Thursday and if her counts are good enough I believe she will start chemo again next week. Her broviac would also be replaced before starting chemo, we'll know for sure later in the week. Her eyes seem to be doing well, no pain there, although she has had some headaches off and on over the last few days. Doc says it could be from the temozolomide. We'll see. She won't have any scans done until after this second cycle of chemo, so we should know something within the next month or so. Once we find out exactly what kind of activity she has going on inside of her, I'll be contacting the docs in New York with hopes of beginning another clinical trial of some sort. Hopefully antibodies, those seemed to do the most for her so far. If not, we'll be hoping for something else to come our way. I won't let a "maintenance" chemo be her only option. She's come too far and fought way too long and hard. I know there's something for her somewhere.

Her steroids were decreased once again last week. She's almost off of them. That will be so nice, she can't wait. She's so tired of wearing her comfy clothes and having puffy cheeks. She wants so much to wear her nicer clothes that she has. I don't blame her, I want that for her too. She wants to "feel pretty" again. I keep telling her she is pretty and she doesn't need her clothes to make her feel that way. I would probably feel the same way if I were in her shoes.

Saturday evening we went to a community halloween party. It was nice, except for the rain. Only residents of Reynoldsburg were allowed to attend. You registered by giving your address and the number of people in your party and then they issued tickets to the children so they could play games. They also issued tickets to each family member for a free hot dog, doughnut, and beverage. I thought that was really nice for a community event. I've not heard of too many places doing that. We only stayed for about an hour. It was sprinkling when we went, and not too long after we were there it started pouring. We had umbrellas and raincoats but we were soaked anyways. So we left for home and made hot chocolate to warm us up.

Sunday she spent the day with her friend, Amanda. Amanda's mom came and picked her up around 11:30 and they went back to the other Amanda's house and made a gingerbread haunted house, ordered pizzas, and watched movies. She got home around 7:00. It was nice to see her get out of the house for a change, and she had such a good time. It was nice to see her do something other than homework which she smothers herself with, probably to get her mind off of things. She came home with an absolutely huge stuffed bear, almost as big as her, and a case of twix candy bars since those are her favorite.

Today she went to school but I picked her up early. She called this morning and said she wasn't feeling well. Her headache was back and she had a bit of a temp (99.8). Last time this happened she had a line infection. Hopefully it's nothing this time. She's taking a nap right now which is nice to see, she usually fights me on the napping issue.

Next step, see the doc and have labs checked on Thursday.

Thanks to all who pray for our family. Please sign the guestbook.

Friday, October 15, 2004 9:22 AM CDT

Just when we thought the computer was fixed... now there is a virus so hopefully we will get that fixed this weekend. I'll try to remember everything that's happened, so bear with me.

Her CT scan on her abdomen was normal, what a relief!! One less thing to worry about. Amanda started the irinotecan/temozolomide combo on October 4 even though her platelets still aren't in a "safe" range for administering chemo. The irinotecan runs for 10 days and the temozolomide for 5. She had a platelet transfusion on the 5th and received a blood transfusion on the 6th. She received more platelets on the 11th and so far has been holding since. She is tolerating this chemo extrememly well and so far seems to be feeling pretty good. Actually this is probably the best she has felt since we come home from New York in August. She has been having some problems with her broviac, it's been flushing just fine, but you can't get a blood return on either lumen. She had a dye study done yesterday which shows a "fibrous sheath" at the end of her line which is at the tip of the superior vena cava. It shows that when you try to get a return, the sheath closed up over the end of her line not allowing anything to draw back. That will be replaced shortly, we don't have a date for that yet.

Two weeks ago we stayed the weekend with my parents and went to the Prairie Peddler Festival in Butler, Ohio. It's an arts and crafts thing. We had a really nice time and we had rented a wheelchair for Amanda so she could get around easier without becoming so tired from walking. The strength in her legs is finally starting to show signs of improvement. We take her outside in the evening and put her on one of the smaller bicycles that we have. We go along beside her as she rides to keep her steady and to prevent her from falling over. She is only going about two houses down and back right now, but it's enough for her to start with, and enough that she is noticing more strength. She is still struggling with climbing the steps, but I've noticed she can climb them quicker since she has been exercising those legs, and she isn't having as much difficulty getting out of the bath tub. This is the first week I think where we haven't needed to help her get out of the tub.

Next week she'll only have labs checked on Monday and Thursday. She should be having scans done shortly to check the progress in her head and everywhere else in her body so we know exactly what is going on. Hopefully we will be back on a newer treatment soon.

Halloween is coming and she wants to dress up for trick or treat while she passes out candy. She wants to be a whoopie cushion so that she can press the button and make herself squeak. She's such a funny kid.

The Reynoldsburg newspaper did an article on her this week. It was a very nice one. You may be able to access it at www.snponline.com.

Please sign the guestbook and thanks to everyone for helping and praying for our family.

Tuesday, September 28, 2004 9:15 AM CDT

Hi guys, finally our computer is fixed at home. So many things to catch up on I'm not sure where to begin.

Amanda still hasn't started chemo. She started complaining of headaches on the right side and we also noticed that as her steroids decreased in strength, her face became all the more bloated, along with her belly. She also started to have some numbness on the left side of her face around the corner of her mouth down to her chin. After speaking with Dr. Ranalli (her oncologist at home), we decided to do an MRI of the cranial bones, nerves, and brain. The MRI showed a tumor behind the right eye, left eye, and on the brain. The tumor behind the right eye is the one that has put her in danger of losing her eyesight if not treated immediately. Dr. Ranalli spoke with Dr. Kushner, I spoke with Dr. Kushner as well, and we decided to get radiation done as quickly as possible. I asked Dr. Kushner if he thought we needed to get back to NY asap, and he stated there isn't any reason why treatment couldn't be done at home, it would be the same as in NY.

Wednesday last week we went to the Arthur G. James Cancer Research Institue to meet with the radiation oncologist. They also did a CT scan to confirm size of the tumors and to pinpoint exactly where to radiate. The one behind the right eye is approximately 1.25 x 1.25 inches. They didn't give me a size on the one behind the left eye, they just indicated that it was much smaller than the other and that they would radiate that one as well to prevent future problems with the left eye. The one on the brain is about 6.5 centimeters long and not very wide at all. They also indicated the one on the brain is in no way, at this time, intertwined with any brain tissue, it's simply resting on the brain. (Since when did this become simple?) But, the radiation oncologist is refusing to do radiate the one on the brain at this point since it didn't show up on the CT scan, only the MRI, so he indicated that he couldn't confirm that it's neuroblastoma. Now, I'm no doctor by any means, but I do know that I have watched this area of disease go away, and I've watched it come back, according to her scans. I know it's neuroblastoma. At any rate, radiation to the tumors behind the eyes started Thursday last week and will last for 2-3 weeks, once a day. The tumor on the right is laying directly on the tear gland and has caused some "dry eye" symptoms which she is using artifical tears to help alleviate. Other than that, she has already noticed some improvement, she no longer needs to wear her sunglasses outside to avoid the bright light, and her headaches have gone away. Modern medicine is amazing to me and her strength in fighting this is just as amazing. She's a wonderful child and so very strong willed.

We have also been to see a Developmental Disabilities Physical Medicine doctor as well. This guys job is to make sure her bladder is functioning like it's supposed to and to assist her in regaining the strength in her legs, which haven't improved at all for at least a couple of weeks. The general consensus there is that as long as she is on the steroids, she won't get any stronger since steroids cause weaknesses in the muscle tissue. So until she is off of the steroids we have been discussing getting her a cane to assist her with her walking, mostly for long distances. She's thinking a neon pink one would do. As far as her bladder, they did a scan and confirmed that she is finally back to normal with releasing all of its contents when she is supposed to. It's about time we get some good news, huh? That was a big relief. Neither one of us were looking forward to learning how to do a straight cath.

I kept her home from school last week, after a small argument with her. Too many germs floating around the halls, bronchitis, stomach flu, strep throat, mono, and whatever else we didn't know about. That wasn't the only reason though. She was extrememly weak and just didn't have much energy for anything. She napped every day and this child doesn't nap unless there is something wrong, or is heavily medicated from antibodies. :) Her hemoglobin dropped rapidly last week and she received a blood transfusion on Friday. Platelets still aren't up enough for chemo, which will now be the irinotecan/temazolamide combo. She had a platelet transfusion yesterday, they were at 22. The doctors seem to think her counts aren't recovering like they typically do due to all of these tumors inside her little head, makes sense to me and that's always been what I've read. We do have the option to start chemo and supplement her with platelets as needed, but the doctor feels that is too dangerous for her. So we are hoping that she will be recovered enough by the end of this week between her transfusions and radiation, and hopefully will start chemo Monday next week.

She will be having the CT scan on Thursday this week. She has been having some pain in her left abdomen right where her original tumor was, and a little bit of her hip is hurting as well. X-rays were done yesterday to rule out other things, x-rays were fine by the way, so we'll see what the CT shows.

But she is much happier this week and will be going back to school tomorrow. I'll be able to update more frequently now, I hope, so please keep checking on her and please sign the guestbook, she likes reading the entries.

Lots of love.

Friday, September 10, 2004 10:54 AM CDT

Good news!!!! After speaking with our nurse practitioner here, the MRI results show that the tumor in her spine that has caused all of these horrible problems is GONE!!! There is some scar tissue from the radiation, but the tumor appears to be gone. Miracles never cease.

Her platelets were checked earlier this week and they are at 59. They will be checked again on Monday, and if they are up enough then she will start chemo also. Five days worth, but it will be outpatient and she insists on having afternoon appointments so she can continue to go to school. I don't know how she does it.

Her legs continue to gain strength, especially now that she is eating better and starting to put some weight back on, she's was at a whopping 92 the other day. Hopefully by Monday she'll have gained a couple more. She certainly is putting a dent in the pantry.

Her control over her bladder is still improving, so I don't think, at least I hope, nothing more comes of that. She is also still being weaned off of the steroids. I can't wait until she is done with those. She looks like she has chipmunk cheeks, but that's better than the alternative.

Back on August 22 when Amanda's Angels participated in the Walk for Wishes to raise money for the Make-A-Wish Foundation, we had 17 members on our team and raised $1892 for them. We were pleased with the turnout and we are setting our goal higher for next year. Members of Amanda's Angels are listed below. Thanks to all who participated.

Vicki Miller Janice Miller Colin
Eric Wilson Richard Miller Kendra Wilson
Amanda Jeffries Reggy Duch Reggy's neighbor
Jeff Miller Ned Pusey (can't remember her
Evie Miller Eva Pusey name)
Rebecca Miller Gabby Beth & Drew Taylor

I don't think I left anyone out, but if I did I apologize.

We also went to the Columbus Zoo on August 21 to participate in the fundraiser for childhood cancer. It was sponsored by Congresswoman Deborah Pryce and it benefited the Hope Street Kids which gives grant money to Columbus Children's Hospital and New York's Memorial Sloan Kettering Cancer Center, both institutions where Amanda receives her medical care. We actually met with Deborah Pryce and spoke with her briefly. It was a very touching conversation. Her daughter passed away at the age of 9 from neuroblastoma.

Wish us luck for chemo next week and I'll update soon.

Lots of love to you all.

Sunday, September 5, 2004 11:26 AM CDT

Hello everyone. Sorry it's been so long since the last update. We aren't hooked up to internet service at home, I'm too cheap to pay for it. We are at mom's today celebrating Amanda's 15th birthday, which is actually tomorrow, so I am using her computer.

We did fly home that Friday evening from NY. She did really well and we went into the clinic here to have her counts checked the following Tuesday. She needed platelets and also had the catheter removed. She also started experiencing problems with her throat where they did the radiation. It got to the point where she couldn't eat or drink anything, even water burned to swallow. The docs here gave a prescription for carafate, which "coats" the throat, and is usually used for stomach ulcers and esophageal erosion. That wasn't helping much so by the end of the week she was also on oxycodone elixir and diflucan, all for the throat. She was using the restroom every few hours, so the catheter did not have to be put back in. Her balance and her legs were still very weak so we had an appointment with the physical therapist. She has to do her therapy twice a week with exercises at home, but is slowly gaining strength.

The next week she received platelets twice and also had an ultrasound done on the kidneys and bladder. Her kidneys are functioning normally with no signs of any masses or abnormalities, thank God, although her left kidney is shaped a little differently which they say is a result of the tumor having put so much pressure on the kidney before it was removed. Nothing to worry about. The bladder is also healthy, but we realized that even though she is using the restroom and has the urge to go, she is not emptying her bladder completely. This means that there could be a potential risk for kidney infections, bladder infections, and possibly leading to kidney failure. So it is a possibility Amanda will have to learn how to do a straight cath on herself, which means to insert a catheter every few hours to totally relieve her bladder. This decision hasn't been made yet since Amanda feels that she is continually "getting better at peeing" as she puts it. We just need to watch her closely for any abdominal pains she may have, or unexplained fevers. Physical therapy was twice this week and she is doing really well, but the doctor says don't let her walk too far by herself, she still needs a little something for balance on a longer walk. School started Wednesday this week and I can't keep her away from it. She wants scholarships so bad and she is pushing herself so hard she is totally exhausted by the end of the day. She gets very upset when I need to take her out of school for an appointment. She tries so hard to be a "big girl", sometimes it drives me nuts. Twice this last week she was hurt at school, once she fell and landed on her knee, and the other time some kids were playing a little rough in the hall and bumped into her knocking her flat on her back. Yes, absolutely huge bruises and knots from both. It drives me nuts when she doesn't call me over things like this. The school staff has been wonderful, as always. They take extremely good care of her while she is there and has special permission to eat and drink when needed. Which by the way, she lost so much weight from the hospital stay and the problems with her throat that she now weighs a whole 90 pounds soaking wet. She is so very tiny it scares me.

This last week we were supposed to be in NY for chemo. We decided to stay home for this cycle since we were having difficulty finding a flight through Corporate Angel. It was the week of the Republican Convention so there were tons of restrictions on private planes. The one that we normally take was not flying at all last week. We wouldn't have been able to fly anyways, her platelets weren't up enough yet, which also means she still hasn't started chemo. Platelets need to be 75-100, and hers were at 25 on Thursday. We are hoping that her platelets will come up enough this next week and she should begin chemo a week from Monday. She also had an MRI done on her spine on Friday. We should get those results on Tuesday. Please pray that the radiation/chemo combo has cured the area in her spine which has caused her all of these problems.

Much love to all of you.

Oh and thanks so much mom and dad, (you know what I'm thanking you for), I love you both very much.

Monday, August 9, 2004 3:11 PM CDT

Amanda was released from the hospital on Friday evening. We went back to Ronald and just rested, we were both very tired. It was such an exhausting week. I took her home in the wheelchair, although she has been walking some. We didn't even go out over the weekend. We just stayed in our room, other than to eat, and watched tv, which is not like us at all.

Today we went into clinic for a cbc and a checkup. Her counts are normal, (wbc 5.9, hgb 13.2, and platelets at 116). Good for someone in her condition. As we were waiting for Dr. Kushner, we did the physical exam with questions and comments with one of the nurse practitioners. Dr. Patil, the neurologist, also popped in for a visit. All were very surprised at Amanda's ability to walk, although it's still very shaky, and were very pleased at the progress she has made. The preliminary report for the MIBG scan is out, but not the final. Preliminary shows some new spots in the right shoulder, upper left arm, right side of the skull, and a new spot in between the ribs. The spot in her left leg is also a little bigger. This was definitely not the news that I wanted to hear, but so very glad it isn't worse, and no where near where she was when we first came to New York. I'm sure it's nothing she won't overcome. Some things just take time, and a lot of kids do go backwards before going forward again.

What's next? Dr. Kushner started her on low dose cytoxan/topotecan for five days. She'll do this every day this week, along with radiation, and if things go well, we will be able to fly back home Friday evening. This will be her 12th cycle of chemo, and this chemo will be done every 3 weeks, depending on test results. He also said that the kids don't experience all of the side effects when you do low dose chemo. She may or may not lose her hair, AGAIN, may or may not need blood or platelet transfusions, and most likely will not experience any vomiting or nausea. She never had a problem with that anyways, thank god. She did lose some weight, she's back down to 100 pounds, send more cookies mom. :) She also needs to watch her salt intake while on the steroids.

We are slowly weaning her off of the pain meds, we have to in order to avoid withdrawal symptoms. Starting Saturday she will begin to be weaned off of the steroids. She is still on a catheter, however. That will remain in place probably until she is off of the pain meds. She can't pee or poop, and we don't know if it's because of the meds or the nerves, or a combination of both. But she does get the urges and has feeling so regardless of which, that too is slowly getting better. She will hopefully begin physical therapy next week to regain her strength in her leg. And my favorite part, and hers too, is that she will be able to attend the first day of school. That's always her favorite day, and she misses many people there, mostly staff members because they spoil her, but that's ok. She loves them as much as they love her.

Much love always.

Wednesday, August 4, 2004 7:58 PM CDT

Hello everyone, here's the latest. Beginning Tuesday morning, Amanda started to get the feeling back in her foot and leg. Gradually throughout the day it got even better. By Tuesday evening she was able to feel sensation in her stomach. About 3am last night she woke me up, she thought she had to use the restroom. I got out of bed and went over to her to help her up. She got up all on her own and WALKED to the bathroom by herself! Of course I was right there with her. Thank God!!!!! This child is truly amazing. She is starting to complain about having the catheter in, which means she is slowly getting the feeling back there too. She says the pain in her back is slowly getting better, but is still on the PCA for dilaudid to help control it. She also said she is thinking about having the nurses reduce the amount of medicine the PCA administers. Good signs!!

Dr. Kushner came in this afternoon to check on her. Outside of her being able to walk and regaining control of her bladder and bowels, I'm very afraid the docs won't allow her to continue with antibodies. Antibodies have been much more successful in ridding her of this disease than chemo, and I pray that she can continue them. At any rate, Dr. Kushner's plan is to have an MIBG scan done and if there are no other significant changes on her scan, she will be allowed to continue with antibody therapy. If there are significant changes, then we go to plan B. Don't ask what that is, we don't know yet. Amanda made sure she told Dr. K she doesn't want to go anywhere but here for treatment. I think she finally feels comfortable here in knowing that she is getting the best treatment available. He assured her that he always has a plan. The MIBG hasn't been scheduled yet, but when we get the results I will post them as well as the next step. Radiation on her spine will end Friday next week, and she will continue on the steroids at a maintenance level upon being released from the hospital.

Other than that, it's been a little emotional today. Between dilaudid, benadryl, and steroids, she's an emotional roller coaster, which is very difficult for me to watch and also sometimes hard for me to bite my tongue.

On a happier note, Amanda's Angels, our Make-A-Wish Team for Walks for Wishes, is still planning on walking August 22. Worst case scenario, we will fly home for the weekend, and the route is wheelchair accessible if we need it. Many of our friends and family have generously donated and sponsored our team for this event, as well as Watkins Printing Company who will be matching our total funds collected at 100%.

Thanks for checking the website and please sign the guestbook. Thanks for the cookies mom, we love you.

Tuesday, August 3, 2004 9:24 AM CDT

Hi guys. Sunday turned out to be a very nice day here, still hot and humid, but the rain had went away. Amanda and I went to Rockefeller Center with our friends, Virginia and Jay. We had a really nice time. We stopped and got pretzels at Auntie Anne's and went to the NBC Studio Store. Amanda really liked it in there. Amanda was still having some difficulty walking so we took her in the wheelchair. After walking around Rockefeller, we decided to walk back to Ronald and grab a bite for dinner on the way. We stopped at a place called Coldwaters which was very good. I had crab cakes and Amanda had spaghetti. We also stopped at a bakery on the way home, Virginia had told us about it, we picked up cupcakes for dessert later.

Monday morning as we were getting ready to head to the clinic Amanda realized that not only could she not walk, but she also did not have any feeling in her right leg. She had also lost feeling in parts of her stomach, and had lost control of her bladder as well. It was time to let the docs know because no longer did I believe it was a result of the Vioxx she was taking. After getting her CBC we went to speak with the nurse practitioner. Once we explained all of the symptoms Amanda was having, she spoke with Dr. Kushner and they had called in a neurologist to do a consult. Dr. Patil, the neurologist, did an exam and sent Amanda for an emergency MRI, something was pressing on the spinal cord. While in the waiting area for the MRI, we met another neurologist, Dr. Gershon. He explained to me that he would be watching the MRI as it was done and also told me to not go very far, it was a possibility that Amanda would have to have emergency surgery, depending on what they found. Now if that doesn't scare you to death, I don't know what will.

After the MRI, Dr. Gershon came out and said that Amanda did indeed have a mass that was pressing on the spinal cord. I asked him if it was a tumor and he said he didn't know what it was, and I thought great. Pretty typical of our family to get these really odd diseases to begin with (mom and dad you know what I mean)and now Amanda has an "unknown" mass in her body. Dr. Gershon said he would know more after speaking with the radiologist and the neurosurgeon. After doing so, we found that this mass has two parts. The first part is what they call epidural disease, which is my understanding that this is disease in the tissue surrounding the spinal column, and on the back side of the spinal column. The second part to this mass is that is in fact a neuroblastom tumor inside the spinal column itself. The first part is operable, the second part is not. Dr. Gershon also made it very clear to me that at this point, we do not know exactly how much of this will be permanent or temporary. So, without causing further damage to the spinal cord, and in hopes that she will walk again, it was Dr. Gershon's recommendation to begin radiation right away, along with high doses of steroids to alleviate the swelling.

After speaking with Dr. Kushner, who always makes me feel so much better about her treatment, he said that this tumor in the spinal column is very tiny. He also said that if this size tumor were anywhere else in the body, he wouldn't even worry about it, it's that small. It just happens to be in a place that presses on the nerves that can affect other parts of the body. But most of these other problems she is having is due to the swelling, not from the tumor itself, which is a good thing. We also spoke with the radiation department. Between radiation and Dr. K., they feel extremely confident that the combination of these two therapies I have listed above, will give her a complete recovery. He said she could walk again by the end of the week, possibly as early as today.

She is gaining some feeling back in her leg and is able to wiggle her toes and foot (at the ankle) now, and she is also starting to giggle when I tickle her foot, which is a good thing. When she giggles, I giggle. And throughout all of this that we had been through yesterday, not once did she truly fuss. Even though it is a serious matter, she still sat there and laughed when telling the doctors that she couldn't feel anything. And when she was told there were no guarantees about walking, she just looked up and said, "I will walk again." That right there told me not to worry. It's times like this when I am so thankful that she is stubborn, and never wanting to give up. I always tried to teach her that she could do whatever she wanted if she just set her mind to it. I'm proud to know that she learned that.

They did admit her yesterday after the MRI, more for observation than anything else. We aren't sure exactly how long we will be here, and as far as treatment goes, Dr. Kushner wants to get this issue resolved first before going any further with anything else. Looks like we may be here for awhile this time.

Please sign the guestbook and keep us in your thoughts and prayers.

Sunday, August 1, 2004 11:15 AM CDT

Hello everyone. Last Sunday evening we took Amanda to the emergency room in Columbus for her back. The pain was getting so bad she couldn't sleep at night. The doc in the ER confirmed what we had suspected, that it was just a pulled muscle. He prescribed some more tylenol 3 with codeine and a muscle relaxer, flexeril. He said the combination of the two would cause her to be able to relax and sleep very well throughout the night. Amanda has a very high tolerance for some medicines, needless to say she was up a couple of times throughout the night anyways, with the medicine not helping all that much.

We flew back into New York this past Thursday evening and we went to the clinic first thing Friday morning for two reasons. The first reason is we had to pick up her beta-glucan for the weekend and the second was to speak with the docs about her back. After speaking with Dr. Kramer, she thought too that it is just a pulled muscle, perhaps even a torn muscle. She checked Amanda's last scans that were done mid-June and there is no disease in the area where her back hurts and she also said it is not a typical symptom of a neuroblastoma patient, and after the physical exam, confirmed as well that it is just a pulled muscle. She is going to schedule an MRI and an MIBG just to be on the safe side, but we don't have any dates on these yet. Dr. Kramer did suggest taking Vioxx instead of the flexeril, she thought it might work better, and that it did. Amanda took her first Vioxx Friday evening, and when she woke up Saturday morning she went to get out of bed and her legs went right out from underneath her. Vioxx works real well. It's just a side effect of the medicine, so last night I gave her half a pill. It seemed to relieve the pain in her back and this morning her legs are still a little wobbly, but not as weak as they were yesterday morning. I've been calling her rubbergirl, which she giggles at just as much as I do. We've pretty much agreed that you have to laugh about some of this stuff otherwise you'd go insane.

We haven't done much this weekend, we've been pretty lazy. She stayed in most of the day yesterday and played her gameboy with Jay. I imagine she'll do much of the
same today, it's raining outside, and also very hot and humid. Yuck. 3F8 treatments will start tomorrow, hopefully things will go ok for her.

Amanda is craving cookies grandma, she says please send some and she loves you and grandpa.

Friday, July 23, 2004 10:14 AM CDT

Hello everyone. Amanda is doing really good this week. Hair is growing, she's been doing a lot of relaxing and helping me around the house with chores. She's been having a little bit of pain in her back between the shoulders and at the bottom of her neck. You can tell her muscles are swollen. She took some tylenol 3's for a couple of days and has graduated to just regular tylenol so I know it's getting better. She's had this before and the docs are pretty sure it's just a pulled muscle since there isn't any disease in that area. She's going to the pool today with some friends of ours(Yes mom she will be wearing sunblock). I know she'll have a good time.

To let everyone know, today is my last day of employment. The company I work for can no longer allow me to have an extended leave of absence without documenting the information and taking disciplinary action. FMLA time has run out from last year, and when I reapplied, I was short the required number of working hours needed to qualify again. What will I do? Not sure yet. I have several things in mind, but until then, we just hope and pray. I know God won't give us any more than we can handle.

On a more positive note-the local Make-A-Wish chapter is having a Walk for Wishes on August 22 at Easton Town Center in Columbus. It's approximately a 3 mile walk with food and entertainment provided afterwards. We are currently in the process of forming a team for this event which is to be a minimum of 10 people. Our team name will be "Amanda's Angels". Anyone interested in joining our team can call (614)860-0228 and ask for me or leave a message. Registration papers need to be turned in quickly so please call before July 29. I know it's not much time but we will be leaving for New York that day also.

In addition to the above, anyone interested in donating funds to this event on behalf of our team can make checks payable to Make-A-Wish and mail to: Walks for Wishes, c/o Vicki Miller, 8331 Glencrest Drive, Reynoldsburg, Ohio 43068.

Thanks for checking the website. Please sign the guestbook and thanks to all for your support.

Monday, July 19, 2004 11:45 AM CDT

Hi guys, sorry it's been so long since the last entry. The second week of antibodies went much easier on her than the first. Not as much pain during treatments and she was able to walk well most of the week. We left Ronald Friday afternoon to leave for vacation.

We took a flight from Newark, NJ to Corning, NY where we were picked up by the family and headed on towards Quebec, Canada. My parents and my brother and his family also vacationed with us. We arrived at our vacation spot early Saturday afternoon. We stayed in a cabin that sits right on Lac Victoria. We fished several times a day, every day, and ended up catching 90 fish in 6 days. Watching Amanda catch her first fish was funny, one of those times when you wish you had a camcorder. It was awesome. It was so nice to be able to somewhat relax and not have to think about getting up to go to the hospital the next morning. We liked it so much we have already booked the same trip for next year. It seemed like it took forever to get home though. No one wanted to leave, it is so quiet and peaceful there. Coming home it took 2 hours to cross the border back into the United States. But, we made it and it's back to our normal routine today.

Amanda pulled her fair share of jokes on the relatives this last week. She played tricks on Grandpa and Uncle Jeffy and managed to put a very nice shade of blue eyeshadow on them both. (It was a rainy day.) Our last night there her uncle told a whopper of a story. We were trying to scare the children before going to bed so he commenced to tell about a fire-breathing monster that comes out of the lake every forty years. This monster ate cars and boats and liked little kids that wore yellow and had smelly feet. The only thing that could keep the monster away was a glow stick, which we only had one of, so guess where everyone wanted to sleep that night? Most of us adults were laughing really hard and you would think that the kids would have caught on, but they didn't. They had fun listening though. We never did tell them it wasn't true. We figured we'll save it for next year and add to it.

Looks like we will be back in New York on July 30 for the next treatment and some testing afterwards. Please sign the guestbook, it's nice to read the messages that are posted and to know that people are thinking of you even if you don't know who they are. Thanks to all for your support.

Monday, July 5, 2004 12:50 AM CDT

Hello everybody, I hope you all had a good holiday. Ours was really nice. Everyone at Ronald was escorted by NYPD down by the Queensboro Bridge where we all watched the Macy's fireworks and also had a BBQ. We were right on the water and the breeze blowing off of the water was really quite refreshing. It was quite an enjoyable evening.

After the first week of antibodies, Amanda is doing very well. She had an awful time dealing with the pain for most of the week. Monday through Wednesday were the worst for her, with the pain easing up just a little on Thursday and Friday. A lot of the pain associated with the antibodies for a child her age is neuropathy, affecting the nerves in her hands and feet. She was wheelchair bound up until Friday evening when she finally began to walk further than the bathroom. She took a small amount of pain medication on Saturday, but Sunday and Monday were really good days for her, and she didn't need any pain medication. Her counts look real good, platelets and hemoglobin are normal, (the first time since chemo back in May), and her white blood cells are bouncing back and forth, which is due to the GM shot she is taking on a daily basis.

Being that she is the first child on this protocol, it's sometimes hard to differentiate what symptoms are new. Most of the symptoms and side effects she is having are the same as the last time she did antibodies, however, to a much greater degree. The pain experienced during this treatment is a hundred times greater than it was before and she also has difficulty going to the bathroom, which the doctors say is due to the pain medicine received during treatment. We'll just have to keep watching and see if some of these things subside. Many times this last week I watched her cry and cry and beg and plead with me to go home. I think it's times like those that make it extremely difficult to keep taking her to the hospital for these treatments, and I want so much to take her home where she finds comfort, and I can't because I know that this is the best place for her to be right now. But, we know that this treatment works for her and she will be tested again in the middle of August to find out where she's at. I know they will be good results.

Thanks for checking her website and please sign the guestbook.

Sunday, June 27, 2004 11:14 AM CDT

Hi guys. We came back to NY on June 14 and did tests all week. Thought we would get a break so we flew back home on the 21st, got a call from Dr. Kushner on the 22nd, and ended up flying back on the 23rd. Test results were mostly good. All of her tests came back showing no evidence of disease with the exception of the MIBG scan. The MIBG showed an increase in activity above her left knee and a small area on her right side. The area on her right side they think is new, but it's possible it just may be a normal area for her that shows up on scans. They will keep an eye on it.

Tomorrow she starts a new protocol. It's called the "bio-combo" protocol. It is brand new and was just approved by the government. Her doctors informed me she will be the first child to be on this protocol. Pretty scary stuff if you ask me. It consists of GM-CSF, beta-glucan, antibodies, and accutane. The first two cycles of treatment are 19 days of the GM shots, 17 days of the beta-glucan, and 10 days of antibodies, with anywhere from 2-4 weeks at home in between treatments. The last two cycles consist of the above plus accutane, and I'm not sure how many days of accutane, but I believe it is taken just as much as the glucan, around 17 days. We'll see how it goes. Wish us luck!!!

We did get to do some fun stuff before starting treatment. Last Friday night Amanda went to the Jessica Simpson concert at Radio City Music Hall with her friends, Breazy and Morgan. Then on Saturday evening I was treated, along with one of my friends, to the B.B. King concert in Times Square. We had a really good time, I can't remember the last time I had that much fun. We are getting ready now to walk to Central Park, we have never been and it is a really pretty day here today.

Happy Birthday Dad, I love you.

Thanks to everyone for all of your love and support.

Saturday, June 12, 2004 6:13 PM CDT

Hi guys, sorry for keeping you waiting. Amanda is doing very well. Over the past couple of weeks she has received the usual blood and platelet transfusions due to low blood counts from the chemo. I think she has set herself a new "personal best" record at the number of G shots received after chemo, 28 days worth this time for a total of 35 injections. Her little arms and legs look like pin cushions with tiny bruises around the holes.

She was admitted for stem cell harvest on Thursday this last week. Thursday's collections totaled at 0.32 and we won't know until Monday what yesterday's was. Getting better, but not yet good enough. For those of you who don't know, when you are admitted for stem cell collection they do a minor procedure and place a catheter into the femoral vein in the leg. This catheter has two access ports, one takes the blood out of the body which is then spun through a pheresis machine separating stem cells and plasma from other cells, and the other puts the blood back into the body. This has to stay in place until the procedure is completely done. Therefore, the patient can't walk except to use the bathroom. And although she is sedated during the insertion of the catheter, she is wide awake when they take it out. Not fun. At any rate, she had minor side effects and came through with flying colors, as ususal. She was released and we brought her home late last night.

We are getting ready for our next trip to New York. We will be leaving early Monday morning. Next week will consist of tests with hopes of continuing more antibody treatments after. We'll see.

Please keep Amanda's friend, little Leigha, in your thoughts. She is 10 days post transplant and has yet to begin to show signs of new cell growth. Amanda and Leigha write to each other about once a week and just love each other dearly.

For my parents:

Mother - Thank you so much for helping with Amanda this week. We love you bunches and are very grateful. I don't know what I would do without you.

Father - Thank you for the tune-up. I knew it was well over due, I just like to harass you. I love you bunches too!

Wish us luck and hopefully the next report will indicate NED status. (No evidence of disease)

Wednesday, May 26, 2004 3:06 PM CDT

What a weekend!!! I thought prom was a huge success!!! Jay and his mom came into town on Thursday evening and we enjoyed dinner at Tumbleweed. Friday morning, Amanda had to go get her MRI and have her counts checked, which she ended up needing platelets. Platelets weren't available at the hospital, they had to be ordered from the American Red Cross, so we left for a couple of hours. We met Jay and his mom back at the house and had lunch. Afterwards, we dropped Jay and Amanda off at the hospital for platelets. While at the hospital, she got a fever. The nurses begged and pleaded with the doctor not to admit her so she could go to her prom. It worked!!! Instead, they drew blood cultures to test for infection and administered an antibiotic through the IV that was good for a 24 hour period. Thank goodness!!! Luckily, her fever went away.

Saturday was such a busy day. I took Amanda for her manicure first thing, and then we were able to come home and rest, or so I thought. Pretty soon, here comes the Channel 10 news guy. He stayed at the house all afternoon, and followed us everywhere we went. After being interviewed, we went on to Kenneth's for the pedicure, picked up jewelry that was donated by IDG Jewelers, and picked up the flowers. By the time we got home it was time for her to get dressed.

Amanda and Jay were absolutely the cutest couple there!!! I've got 3 rolls of film and videos and just everything imaginable. It certainly was a day filled with memories to last a lifetime for everyone. Hopefully mom will be posting the prom pictures tonight!!! :) Both said they had a good time, and I really hope they did. They did end up coming in early, I think they got home around 11. Jay had fallen asleep in the limo on the way back to the house, and once Amanda changed, she fell asleep on the couch. They were both too exhausted and ended up staying home instead of going to the post prom event at the high school.

And just when we thought it was over...Corporate Angel was kind enough to provide a flight for Jay and his mom back to NY on Sunday morning. What a lovely surprise!! A phone call early Sunday morning indicated that Channel 4 would be there to interview Jay and Amanda again for the purpose of promoting Corporate Angel flights and volunteers. (I think.)So not only were they on Channel 10 first thing Sunday morning, but they were on Channel 4 Sunday evening and again Monday morning. What an exhausting weekend, but well worth it.

Monday Amanda's platelets were down to 10, so she had another transfusion. She has a couple of mouth sores this time which is causing her some difficulty while eating and sometimes while talking. She slept most of Sunday and Monday, and has just finally started to perk up a bit today. We go back to the clinic tomorrow to check her counts again, and hopefully if her white blood cells are up enough, they will be harvesting stem cells next week.

Thanks to everyone who contributed towards the effort of sending Amanda and Jay to the prom.

Tuesday, May 18, 2004 11:12 AM CDT

Amanda came home from the hospital Saturday morning. She continues to eat well and has only lost two pounds. She's doing quite well so far, better than any round of chemo in the past. Her labs were checked yesterday and everything looked good for the most part. Her platelets are running low at 68, so I expect her to receive a platelet transfusion by the end of the week. They expect to collect stem cells around June 9, if not sooner. Hopefully they will be able to collect more this time. Apparently the stem cells they were able to collect before are stored at OSU. I was unaware that they did this. I just assumed if they didn't collect enough then that was that. I do know the target number they are hoping for during stem cell collection is "5". I'm not sure of the unit they use. Amanda's last collection was .058, not too many. We're hoping this collection will be more successful so it can give us more options in the future if necessary.
Everyone is getting excited about the Prom. Jay and his mom will be arriving on Thursday, and staying until early Sunday morning, when they will head back to NY for more treatment. We went and picked out his tux last night. It appears as though another couple, (Amanda's friends Dianna and Ryan), will be attending prom with them. It should be a nice evening for them, I can't wait. I think us moms are just as excited as the kids are.

Wednesday, May 12, 2004 11:17 AM CDT

Hello everybody. Amanda was admitted yesterday for her ninth round of chemo. This will be the same as the one she had in December. It was quite a long day yesterday. She has to have a creatinine clearance with her urine before they will begin chemo, and it took 11 hours. All kinds of blood work was done, ( I was beginning to get concerned about kidney functions.), and we found out Amanda was seriously dehydrated, so her chemo didn't start until around midnight last night. She woke up around 4 this morning complaining of nausea, she took some meds, and then at 6am she was eating her third bowl of cereal. Quite an amazing girl she is. Speaking of eating, she has gained nearly 9 pounds in two weeks! Glad to see she has finally put some of that weight back on, although she will most likely lose most of it within the next week or so. I just talked to her and she sounds great!!! No upset stomach and she is hungry. Good signs.

We shopped for her prom dress over the weekend. We picked one out at the mall. It's a very pretty pink. Reminds me of a little princess dress. She tried it on after trying on others and I knew this was the one for her. We have been asked to chaperone the post prom event. I am thinking we may just do that. I can't remember the last time I was up until 4am. Thanks for checking on her, and I'll try to update later in the week.

Friday, May 7, 2004 12:48 AM CDT

Hello everyone, after speaking with Dr. Kushner, the plan is as follows. Tuesday May 11 Amanda will be admitted to Columbus Children's Hospital for one cycle of chemo to prevent a hama during future antibody therapy. Upon recovering from chemo, (approx. 3-4 weeks), the doctor's here will try to harvest stem cells through the peripheral blood. They tried this once before and were not successful. If stem cells can't be retrieved this way, they will be removed surgically from her hip bones in New York. After the stem cell harvest, we will be back on another protocol with the 3F8 antibodies. In the meantime, the MRI on her head will be done May 21 to evaluate disease shown on the MIBG scan. We expect to go back to New York mid-June.

We will be shopping for her prom dress this weekend and making final arrangements for the prom itself. She's considering going to the after-prom event held at the high school until 4am. Looks like it'll be a long night, but if the kids are having fun, that's all that matters.

Thanks for checking the website.

Tuesday, May 4, 2004 2:04 PM CDT

Hello everyone! We got home from NY last Friday morning. What a relief! I always wanted to go to NYC, now that I've been there so much, I could care less if I never went back. The test results please....the bone scan was good. It showed one "suspicious" area in her left femur. The CT scan was normal. The MIBG scan continues to show a small spot on the back of her skull, but it has reduced in size. The VMA/HVA results aren't in yet. The bone marrow tests show NO EVIDENCE OF DISEASE!!! What an improvement!! We were all so happy to hear this, finally one of our prayers has been answered.

Now, the next step is not quite worked out yet. Amanda has to have an MRI done on her head, and then probably radiation. After that, the latest possibilities of treatment discussed are either go back to NY for more antibody treatments, or stay home to do one round of chemo, harvest stem cells, and then back to NY for transplant. I find myself complaining and dreading the day that she might lose her hair again. But you know what? Bald, fuzzy, or a complete head of hair, I love her just the same and we will continue to do whatever it takes to beat this ugly disease. She has jumped over many hurdles in the last year and she's only got a couple left to go before she wins. YOU GO GIRL!!!

We did receive a bit of sad news yesterday. Amanda's best "NY" friend, Leigha, has been going through the same treatments as Amanda. They were so cute together. Once treatment was done they would crawl in bed with each other. I'll never forget the day in January when they were sharing the same room and Leigha was having an awful time dealing with her pain. Amanda went and crawled in bed with her and Leigha hushed right up. That was all the comfort she needed. Both mothers and grandma, and I think even Leigha's dad shed some tears. Leigha's test results from last week compared to those in February are worse. She will be going to Children's Hospital of Philadelphia to do MIBG treatments. (Very high dose radiation that requires you to remain in a lead-lined room until radiation levels emitted through the body are considered safe.) The best of luck to Leigha, we love her dearly. For those that are interested, Leigha's website is www.caringbridge.org/ma/leigha.

Saturday, April 24, 2004 1:51 PM CDT

Hello friends and family. Yes, we are still in NY, and we miss all of you. We can't wait to get home, hopefully for longer than two weeks this time. Antibody treatment is done for now, and we are about to begin testing. A complete series of tests will be done beginning on Monday, and hopefully should have results by Friday. We should be flying home on Friday as well.

Just to let you all know what the future holds, Sunday May 9 is Mother's Day and also my 35th birthday. Amanda wants to get me something special, I told her a big hug and a kiss from my little girl (who's not so little anymore), will be just fine. May 16 is mother/daughter day for cancer patients through a program at Children's Hospital. We will be going to Charles Pennzone for a few hours of fun. May 22 is prom day. Amanda has been invited to the Reynoldsburg High School prom this year, something special for her to look forward to. She has decided to take someone she met here in NY at Ronald McDonald. His name is Jay, he is 16, lives in Maryland, and he also has neuroblastoma. They have a lot of fun together, it should be nice for them. Amanda is also taking one of her best friends, Amanda Gall, and whomever she chooses as a date. I can't wait, I'm sure I won't have enough film for any of these events.

A newspaper article featuring Amanda is supposed to be printed in the Reynoldsburg newspaper next week. I can't wait to see that. The school did an article on her early in the year and it was wonderful. They did an excellent job and put the most adorable picture on the front cover. Yes, I have several copies and one of them is framed.

One thing I can say is I can't seem to thank enough the Reynoldsburg High School staff. They are truly wonderful people and have helped our family in so many different ways. I couldn't ask for a better group to deal with.

Anyways, Amanda continues to bounce off of the walls. She's finally enjoying herself here with some new friends. I didn't think that day would ever come. I think sometimes it's harder for the older kids to adjust to a new environment than the smaller ones. As soon as we find out our test results and what will be next in line for treatment, I'll get it posted. See you all soon.

Thursday, April 8, 2004 1:04 PM CDT

Here we go again. Back to NY in the morning for the last round of antibodies on this protocol. Amanda is doing well. She's actually bouncing off the walls, which drives me crazy, but it is soooooooooo nice to see. I haven't seen her with this much energy since this whole mess started. Her hair is so cute!!! Everybody loves it. I can't wait to get pictures on here. We will be in NY until the end of the month and hopefully they will test before we come home. We'll let you know.

Tuesday, March 23, 2004 3:56 PM CST

To make a long story short, Amanda had been through eight cycles of intensive chemotherapy by the end of December 2003. In October of 2003, her oncologist in Columbus called us in for a meeting. His news was not what anyone wanted to hear. There was nothing else they could do for her in Columbus, so he sent us to see Dr. Kushner in New York. After going through tests and speaking with Dr. K., it was his recommendation to begin a protocol with antibodies and beta-glucan, which began in January 2004. The protocol is four cycles of the 3F8 antibody treatment, with testing after the first and fourth cycles. After the first cycle of 3F8, Amanda is almost in remission. One tiny spot of disease is left on the back of her skull. She is in the middle of her third cycle right now, and we will be back before Easter to begin the fourth. I am anxiously awaiting the results of these tests at the end of April, we all are. One thing I need to say is directed towards my parents-STOP WORRYING!! Amanda is going to be just fine, I can feel it. It's going to be a long road, even once remission is reached, but she is one of the strongest kids I have ever seen and she has the willpower and attitude to beat this disease. Every doctor we talk to says that the outcome of a teenager with neuroblastoma is so unpredicatable since most children are diagnosed at a much younger age, teenagers are a "whole new ballpark", they say. Fact is, doctors have told us "most teenagers don't survive past five years, but there are some who do surprise us." We have been told this since day one. And so far, she has impressed every team of doctors that we have dealt with. She is one of those few who surprises them.

Thursday, March 11, 2004 10:10 AM CST

After an ultrasound revealed a massive tumor in her abdomen, we spoke with a pediatric oncologist and a pediatric surgeon. She was to go through a series of tests over the next two days and then have the tumor removed. The tumor was attached to her left adrenal gland and completely surrounded her kidney. The surgeon was sure he was going to have to remove the kidney as well. After seven and one half hours of pacing the hospital halls, she was in recovery in ICU. They were able to save the kidney. What a relief!!! Of course they implanted the infamous broviac catheter as well, right into the side of her left breast. That's a shock in itself for a teenage girl. I'll never forget the first time I saw her. I remember taking my time to go see her, I was afraid of what she might look like.

Thursday, March 11, 2004 9:52 AM CST

Almost one year ago, my precious child was diagnosed with an ugly form of cancer, neuroblastoma. Who would have thought a routine check-up with Amanda's pediatrician would have revealed this kind of news? A mother's worst nightmare and a child's worst enemy. Neuroblastoma - a cancer of the sympathetic nervous system; also one of the rarest forms of childhood cancer, and at the same time, the second most common. One in 80,000 children are afflicted with this horrid disease, with most children diagnosed by age 2. I don't really know what survival rates are overall. I know for a now 14 year old, they are not high. Survival rates are just statistics. Statistics show an average number of the data being studied. Amanda is not average and I know she will not allow herself to succomb to this disease. She's been fighting since day one and she's still going strong.

Wednesday, March 10, 2004 10:05 AM CST

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