History

Saturday, March 19, 2011 8:33 PM CDT

I always have a hard time remembering which day I call the beginning. Was it the day we went to the doctor? Was it the day of her first surgery/biopsy? Was it the day I thought I was going home but was called back in from the parking lot to discover that the CT scan showed more than we thought? Has it really been eight years? Wow! I'm going to claim March 26th as the date. I'll have a glass of champagne or something. That was the day we declared war on this beast neuroblastoma.

Amelia is doing great. It has been a difficult year but it's what living after cancer is all about. I want to mark today as the day I remember my first trip to Johns Hopkins. I'll update on the happenings of the year a little later.

I am searching for other long term neuroblastoma survivors who are living with short stature. We need a support group.

Wednesday, February 25, 2009 6:56 PM CST

Amelia enjoyed her visit with the doctors at Johns Hopkins last week even though she couldn't remember the place very well. I guess that's good, right? She was sweet and friendly and completely unaware of any of my real concerns. After a nice exam with Kathy Ruble, the long-term follow-up nurse, we were sent for a few chest x-rays to confirm a osteochondroma on her rib. She behaved like the veteran that she is and amazed the radiology staff in the process. When we returned to the clinic Dr. Loeb was there and waiting to see and touch Amelia too. She gave him chocolate and a hug and made him laugh. He shared some of her war story with a fellow in the room who really enjoyed seeing what a real survivor looked like. It was so nice to see our old friend Dr. Loeb. I think the feeling was mutual.

The official news is that there was nothing to see on the x-ray. Nothing at all. It was as if the bump wasn't there. What? Dr. Loeb even brought her films to the weekly sarcoma conference for those radiologists to look over them. Nothing. They are telling me that the bump appears to be just a normal part of architecture of the bone. Huh? Okay. So the plan is to ignore it as long as it doesn't do any growing or hurting or anything and to just pretend that it isn't there. That's going to be really easy for me. Right!

I was so happy to find that this bump could be nothing more than a late-effect but then felt sad because it was going to be another one of those things that Amelia would have to put in her backpack for life. Now I'm just confused as to how I feel. I don't like having to watch or ignore anything on her. It makes me half crazy. I am thankful that I scheduled a long-term follow-up appointment with Dr. Sklar while we're in NY for the NB Team Reunion in April. If there is any further change to this little lump we will be able to discuss it with another team of experts. Hopefully it will only be something for the record and nothing else. I am just going to have to have faith.

Saturday, February 14, 2009 9:08 PM CST

Short Update:

I was able to get in contact with the long term follow-up nurse at Hopkins today and she said that this sounds like something benign called osteochondromas. A possible late effect. I feel a lot better about this at the moment but won't count my chickens too early. We have an appointment for Tuesday and will probably get an x-ray.

It's been a really long time since an update and I am at a loss for words right now. My radar picked up a sort of small bump on Amelia's ribcage the other day and I am scared to death. Nothing like having a long weekend to mull it over. I tried keeping this to my self for a little while but finally decided to share it with my husband. I wanted him to tell me I was crazy but instead he told me to make an appointment. I am not about to talk to Amelia or my parents or my children about this until I get her over to Hopkins on Tuesday. Amelia really prefers NY to Baltimore and I don't blame her. She has very few memories of Hopkins and the folks at Sloan treat her like royalty. Regardless I think Hopkins will be able to assess the situation with less commotion. I am really hoping that they can tell me that I'm a freak and send me for counseling. I am really hoping that is just magically disappears. I am really trying to keep positive and hopeful and distracted for the next couple of days. Please don't ask me to talk about this on the phone right now. Please protect my family from my greatest fears. Please pray for it to be nothing. Feel free to leave a note letting me know you were here. Thanks.

Tuesday, March 18, 2008 1:26 PM CDT

It was the morning of March 18th 2003 while I was cleaning up the kitchen after breakfast that I found the bump on Amelia’s head while she sat happily in the highchair. It was what I would call a marshmallow bump. The kind that grows quickly in an instant. Benjamin who was only three and a half had been running around the house that morning with wooden building blocks. He must have hit her with one while I wasn’t looking. Why didn’t she cry? How did I miss it? I had seen a few marshmallows in my time and decided to give it a day to go away.

Amelia was ten months old and had always been a hearty eater but had recently begun eating less. Sometimes she would fuss and then burp and then begin eating again. She was a happy baby. I had also noticed how her skin would occasionally look yellow or almost orange. I had heard about babies who would turn orange from all the carrots that they ate. She wasn’t always yellowish just occasionally and I would blame the lighting or her diet. She was a little more fussy lately but nothing to worry about. Right?

Kathryn(5) was in first grade. Benjamin(3) was in pre-school a couple of days a week. It was now Wednesday and the bump was about the same as it was the day before. Should I worry? She was acting okay. I guess I was really blaming myself for letting the injury happen. I tried not to think about it any more. Ben kept me busy. The day came and went.

The next morning I came into Amelia’s room to get her from her crib and she vomited. Just out of the blue. It didn’t make any sense. She wasn’t acting sick at all. Maybe this was being caused by the head injury? The bump was still there. What is going on? What is happening to my baby? It was time to see the doctor.

I called my mom to come take care of Ben so I could take Amelia to the walk-in hours at the pediatrician’s office. Robert would make sure Kathryn got to school. It was a cold and rainy morning. We were seen rather quickly by Dr. Rice. He thought that her spleen felt enlarged and that she might have a blood disorder. He mentioned hemolytic anemia as a guess and did a stat cbc. He could not explain the bump. Amelia was looking fine. She hadn’t thrown up since we left the house. When the doctor came back in he looked rather serious. He said that Amelia’s cbc had come back showing that she was severely anemic. He asked me to drive up to Johns Hopkins Children’s Hospital in Baltimore right away. He said that although the hospital would have liked her transported by ambulance he knew I would rather take her there myself. I asked him if I could go home first and he said no. I should drive to Baltimore right now and go immediately to the Pediatric Emergency Department. He said that he would call them and let them know to expect us shortly. I left the building with my happy little baby and did what the doctor had asked me to.

It had begun to rain harder now and my heart rate was climbing. What was I doing? Where did he say to go? Would I get lost trying to find the hospital? I acted so cool and confident with the doctor that I fooled myself. The world started moving in slow motion. I called Joanne. I think I called Robert too. Maybe Mom. When I found the hospital I had to find a place to park. I climbed up the parking garage all the way to the top. It was pouring rain and I had to get my baby to Pediatric Emergency. My heart was pounding next to Amelia’s. She was tucked neatly into my sling. I got wet. I followed the signs to Pediatric Emergency.

Saturday, January 19, 2008 8:56 AM CST

Happy New Year! As you can see in the above picture Amelia participated in her first belt test at Balanced Life Skills just before the winter break. The test lasted well over an hour and she had to demonstrate many skills. At the conclusion of the test she needed to break a board with her palm strike. She broke it on the first try and was then awarded a yellow belt for her accomplishments. It was an awesome performance. She was so focused and confident. Mom and I were a mess of emotion.

Saturday, November 17, 2007 11:04 AM CST

Dear Friends and Family,

As most of you know, we were faced with the challenge of our lives four years ago as we fought to rid our ten-month-old daughter Amelia of the cancer that had invaded her innocent little body. Unfortunately, this type of cancer, neuroblastoma, leaves us with no guarantee to her long-term prognosis. The grim reality is that more than 50 percent of the children diagnosed with neuroblastoma relapse, some after five years of remission. The survival rate for children diagnosed with high-risk disease, like the kind Amelia had, is in the neighborhood of 30 percent.

We, along with other parents facing this challenge, find these statistics unacceptable and have decided to act now to do all we can to make a difference to improve these terrible odds. As a result, the Band Of Parents Foundation was created whose objective is to raise money to further the cutting edge research at Memorial Sloan-Kettering Cancer Center (MSKCC), the worldwide leader in treating neuroblastoma. Following a stem cell transplant at Johns Hopkins in 2004, Amelia was treated for ten months at Sloan-Kettering in New York City. She received a monoclonal antibody developed by MSKCC. I am encouraged by the research and future potential of treatments currently under development at MSKCC. Robert and I feel we must do everything in our power to give Amelia the best chance possible, and if she were to relapse, we want to be sure there are new treatment options available.

I have watched as other families have lost their children and I cannot begin to explain to you the feeling of helplessness and misery I feel each day wishing I could have done more. Motivated by this bleak reality, Robert and I are committed to raise money for MSKCC research. It is the first major event on behalf of the Band of Parents Foundation and it is called “Cookies For Kids’ Cancer .”

The Band of Parents, along with a volunteer army of 250 people, including students from the French Culinary Institute who are volunteering their time, will bake and sell 8,000 dozen gourmet cookies (96,000 cookies in total) beginning November 16th and ending December 14th. The delicious recipes are from renowned cookbook author, Sally Sampson’s recently released cookbook, “Cookies”. The cookies will be sold for $30 a dozen and all of the proceeds will go directly to research at MSKCC since almost everything related to the project has been generously donated.

I know that most of you are about to begin the tireless search for the perfect holiday gift for all those on your gift list and I thought this unique opportunity to give a gift that not only tastes good but feels good might appeal to some of you. See the attached PDF file for more details.

The cookies will go on sale beginning Friday, November 16th and can be purchased via the following website: www.cookiesforkidscancer.org . You might also want to visit the “Band of Parents” website: www.bandofparents.org to learn more about the foundation for which we are so passionately involved.

We hope you will pass this e-mail to anyone and everyone you know to help us ensure Amelia, all the children fighting neuroblastoma today, and those who will be so unfairly chosen to fight tomorrow, the hope all children deserve.

Bound by Hope,

Allison & Robert Hantske

Click Here For Cookies

Saturday, November 17, 2007 11:04 AM CST

Click Here For Cookies

Friday, September 28, 2007 10:58 AM CDT

Finally an update! Amelia has started kindergarten and is enjoying every minute. She has lost her first tooth. Unfortunately it was by trauma and was one of the ones that I paid dearly to have fixed a few years back. Fortunately there is a permanent tooth up there and it should make its appearance soon. I am still concerned about what permanent teeth she may be missing and the condition of those that are there. Chemo can really mess with these things.

We had a good summer. Amelia swam for the Hillsmere Hammerheads swim team and competed in freestyle and backstroke too. There is much room for improvement but it was awesome to see her doing what she loves.

August we had our long term follow up with Dr. Sklar in New York. Amelia checked out beautifully. She has been growing some but it continues to be slow going. He would like to continue to follow her growth at six-month intervals. No other late-effect issues.

Before we left the building we were honored with a visit with Dr. Kushner. We left the playroom, walked down the hall and as we entered the room where Dr. Kushner was sitting, Amelia broke into a run right into his arms. She held him so tight that her face was all pushed into his and she didn’t let go for a solid minute or two. After shock and surprise and a few tears I finally pulled myself together, pulled out the camera and took a picture. It was awesome. Beautiful. It captured so many of my personal feelings for that man.

After our visit with him we enjoyed a trip to the Central Park Zoo and Starbucks before meeting up with the bus for the AOL / Time-Warner shuttle. Corporate Angels really know how to take care of us.

Amelia is being evaluated by the Dept. of Health audiologist to determine what services she requires in the classroom due to her high-frequency hearing loss. She is meeting with the speech teacher once a week now to help her with articulation and putting the right sounds with the right words. Just this morning she told me that the word shrimp begins with a “T”. When she says shrimp it comes out trimp. I told her how it was spelled and what sound belongs there. There are many words that she just doesn’t hear clearly but I think she will do fine once she learns how to read and phonics.

Yesterday I joined a group of neuroblastoma families in Washington D.C. to ask for support of the Conquer Childhood Cancer Act. The trip was also to raise awareness of the Loneliest Road campaign (www.loneliestroad.org). The families that attended were representative of all of the families of neuroblastoma. There were angel parents, warrior parents with kids in treatment and parents like me, the ones with No Evidence of Disease. It took amazing strength and determination for some of these families to get together but it was wonderful. We represented hundreds and I felt honored.

Right now an amazing group of parents whose children have been treated for neuroblastoma at Memorial Sloan-Kettering have banded together to raise funds for a humanized antibody. Please go to www.Bandofparents.org to see what it's all about and to donate whatever you can. As far from disease as Amelia is now, she is still not safe from a relapse. These new treatments that are being developed today may be the options that are available to Amelia one day. It is a deadly disease and needs research funding now.

Thank you for stopping by. Please let me know you were here.

Monday, May 14, 2007 8:38 PM CDT

Amelia celebrated her fifth birthday with her friends at the pool this year. Erin is a fellow NB friend who lives a little south of Annapolis. It was wonderful to see them enjoying the water together.

Everything is going well around here. Amelia has been busy playing soccer and learning martial arts. She is also gearing up for a summer full of swimming.

I will have to update with more details when I have a minute.

Thanks for checking in with us.

Saturday, February 10, 2007 11:54 PM CST

Amelia is doing well in spite of her latest cold virus. I feel like we have had little breaks from these things this year. School is a dangerous place. This cold is more bothersome because it has come with a good cough. What that means is that I don’t sleep well and everyone will get it.

Amelia’s pupil is still a little off. Even though we have ruled out all of the awful awfuls I would like to get an expert opinion as to what has happened. We will be going up to NYC in a couple of weeks to see a pediatric ophthalmologist who has had experience with kids who have endured the treatments that Amelia has. I hope to be enlightened.

While we are in New York Amelia will finally have her mediport removed. I am happy that she will be free of devices but am a little nervous about how much harder it will be when we need to get access for labs and scans. Over the years I have heard horror stories about kids who have had their lines pulled in delight who now suffer with repeated sticks to get access when necessary. I’m just going to have to remind myself that her labs and scans are really dwindling these days. It will be something to celebrate.

While we were in New York for the MRI we had a little free time in the morning and took Amelia to a children’s salon called Cozy’s Cuts for Kids. It was a real hoot. The place was jam packed with toys galore and the chair Amelia sat on was a little blue racecar. She had been begging me to take her to a salon for quite a while but seeing that her hair grows so slowly I was in no rush. The stylist gave her a very nice cut and finished her off with two tiny braids and purple beads on top. She was on top of the world as you can see by the picture.

It has been very cold here in Annapolis these last few weeks. They say we’ll have snow on Tuesday. I think it will have to warm up a bit to actually snow. The kids get so frustrated with the cold. I hope they get some good snow and a nice day to play in it.

Amelia went to a gymnastics birthday party for her friend Erin Keenan today. Erin is also a NB survivor and lives just a little south of Annapolis. Amelia thinks that she is now a real gymnast. She is also excited because Erin will be up in NY for 3f8’s the week that we will be there. She’s already planning the hide-and-seek games and fun they will have in the playroom together. I hope that they are both up to it when the time comes.

Thank you for checking up on us. We will try an keep a low profile for as long as we can but don’t be afraid to drop us a line. Hugs, Allison

Tuesday, January 9, 2007 8:24 PM CST

**1/23/07** RE: Amelia's mri: EXCELLENT
Shows no evidence of neuroblastoma.
Khalina, please fax report to family,

thank you,
Dr. K

It was worth the wait to hear those words. I will continue to investigate the cause of the pupil difference. Now it's time to exhale!

**1/16/07** Official results of mibg and ct show NED. (no evidence of disease) We are looking forward to Friday's mri with hope.

Just before New Years Amelia began complaining about headaches again. We had started back on the growth hormone in early December and I assumed it was getting to her again. While standing in line at Sam’s Club she was clearly not feeling well and as I looked into her eyes my heart stopped beating. Her left pupil was noticeably larger than her right.

I decided to stop her growth hormone and tried to reach the endocrinologist but was told I would have to wait a week to talk to her. My mind was reeling. The next day her eyes looked good and she was behaving normally. I had been told that growth hormone could cause inter-cranial pressure and that seemed a reasonable explanation for the pupil difference. I decided I would stop the growth hormone until this happening could be explained.

New Years day we attended a party as a family and again Amelia was not quite herself. I thought she was just feeling a bit shy until Robert pointed out that he could see that her left pupil was again larger than her right. I walked outside and began to cry. The growth hormone had been stopped for five days now. This just didn’t make sense.

I emailed Dr. Kushner in New York and explained what was going on. He scheduled scans immediately. Last Thursday and Friday she had a ct and mibg scan. Preliminary results are good but the official reports are not in. The team recommended an examination by an ophthalmologist as early as possible.

Monday morning we went to an ophthalmologist here in Annapolis and he found that Amelia has an afferent pupillary defect in her left eye. What that means is that the nerve sending messages from the brain to the eye is not functioning properly. Something could be pressing on it or interfering with it some how. He has recommended an MRI.

Dr. Kushner has scheduled an MRI of her brain and orbits for Jan. 19th. It is going to be a long, long week for us.

Amelia’s pupil size difference is not that obvious or severe. She is not complaining about headaches. She went to school yesterday and today and learned that in some parts of the world it is dark when it is morning here in Annapolis. She drove her best friend’s battery operated Jeep all over his back yard today. She was an excellent first time driver. She is not sick. She has a funny rash on her face that I am beginning to think is a reaction to something from her scans. It is improving but quite bizarre.

I have not mentioned any of this to Kathryn or Ben. I do not want them to worry about the unknown. We really just have to sit and wait. There are many possibilities and I feel nauseous just imagining what could be causing this. I haven’t received the official results yet but if the ct showed no masses and the mibg did not show neuroblastoma that is good, but neuroblastoma can hide in the central nervous system and only an MRI will see that.

Please pray for my little girl. Please pray that this goes away as quickly as it came or is related to the growth hormone therapy or a late effect of her treatment and not a CNS relapse. I will update again when I have something more to tell but probably not until after the MRI. I am finding that this is really hard to talk about but would welcome your comfort in the guest book. Thanks for coming to check up on us. Allison

Tuesday, January 9, 2007 8:24 PM CST

Friday, December 8, 2006 11:44 PM CST

Well I can’t believe that it’s December already. We are all doing well. Report cards came in and everyone is doing great. Amelia is not reading yet but she has learned how to spell a few new words like “apple”, “baby”, “Honda” and “Mommy”. These are just a few of her favorite things. She already knows how to spell everyone’s names in our family and her friends too but she does not read. If she spells out some words she will tell you what they spell but she can’t really read them. It’s a neat little gift of hers that makes her unique. I can’t wait for her to learn how to read. Ben is doing well in second grade and is in the advanced math and reading groups. He earned his yellow belt recently and it shows. Kathryn is busy with violin, clarinet, chorus, safety patrol, and school newspaper this year. She had a perfect report card. She recently performed in the school’s winter program and had to move from strings to band and then over to the chorus before the nights end. She exhausts me.

Amelia has been dealing with a lot of congestion lately but no headaches. I feel like she’s been blowing her nose non-stop for two months. We have been enjoying our little break from growth hormones but that is now coming to an end. The endocrinologist found yet another way to supply us with free drug and so we will resume growth hormone therapy tomorrow. I am glad that the headaches were growth hormone related and not a sign of relapse. The endocrinologist would like us to continue with the same dose as before and see if the headaches return. I am hoping that we do not encounter the headaches again but will be ready to document anything significant so we can make the necessary adjustments. Amelia seems to be ready to start again but it’s hard. Who really wants a daily injection?

Our next round of scans will be done in January. This has been the longest break between scans and it has been very hard for me. I should be celebrating that the doctors feel six months is adequate. I should be celebrating that Amelia is getting such a nice break from such miserable procedures and able to live like a regular kid. I found that it is very reassuring to be told that my Amelia is free of disease. I got used to being told that regularly. Now I have to wait six months. I am celebrating. I really am. It’s just hard to let go of the fear of relapse. There are a very few survivors out there that had stage iv, high risk, n-myc amplified neuroblastoma like Amelia. We are blessed to be part of that group.

Recently I sent out an email asking everyone I knew to give to Lunch For Life. It was awesome to see how quickly some of our friends jumped into action. Lunch For Life is an organization that raises money specifically for Neuroblastoma research. We are fully aware that relapse can happen at any time and frequently does for children with Neuroblastoma. Therefore, we need to help find a cure. The concept is simple. We are asking everyone we know to give up lunch for one day and donate that $10 to curative research. You give up your lunch for a child’s life. Hopefully, ten dollars is an amount that no one will miss but that could make the difference in thousands of lives.

If you are inspired, then please give now. Go to www.lunchforlife.org/. Give up one lunch. You could even give up one every month. Now, here’s the powerful part of this effort. We also ask that you call or email 5 of your best friends. Give them the information, tell them the story, inspire them and ask them to do the same as we have asked you. It’s just $10. Ask them to call five of their friends and pass on the challenge. If you can find more people to give, great, if not that’s okay. Some of you will contact many and for that we are truly grateful, but no matter what, we need you to be diligent. My Amelia’s life could depend on it.

Everyone is looking forward to Christmas. Tomorrow night we will be attending the Candlelighters Childhood Cancer Awareness Tree lighting ceremony at the Old Post Office Pavilion in Washington DC. We attended last year and the children really enjoyed themselves. They put on a special night for the children. This year we will be meeting up with at least two other neuroblastoma families that live in the area. It will be nice to celebrate our good health the awareness tree together.

I hope this finds all of you happily enjoying this holiday season. Thank you for checking up on Amelia. Thank you for cheering her on. Grow! Grow! Grow! Amelia!

Sunday, November 5, 2006 8:14 PM CST

****Quick update ****NO HEADACHES THIS WEEK!!!!!!**** We will continue our break from the growth hormones until we figure out how we will pay for the next round. Amelia's complained about foot pain lately as she's insisting on wearing shoes that are too small. That's pain I can handle and understand. My job is to make those shoes disappear.

Sunday, October 29, 2006

Last week was a big week. I finally handed over my messy piles to the accountant. It’s been a couple of years since our last return was filed and it was virtually impossible to account for those two years. I had to research medical expenses, where the money came from to pay them, prescription receipts from hell, and Robert’s business books. Nothing was organized well and much was missed but I just don’t care. We will file and hope they have enough to call it even. I don’t care if I’ve missed $1000 in prescriptions or 1000 miles to doctor’s appointments. I just don’t care. It became painful to go back and look at my life financially speaking. Everything we had BC (before cancer) is gone and I have no idea if we were really responsible for all of our expenses. Insurance became a nightmare and multiple bills went to collections. The bills were later paid by us but should have been paid by Blue Cross in the first place. Some have been reimbursed but I really don’t know where we stand any more. I am just so thankful that our medical needs are waning.

Amelia was treated last month for a uti. She seemed out of sorts over the weekend and with her mystery headaches and leg aches I was relieved that she had a positive culture. The headaches continued and so did my worry so last week we did a quick head and orbits CT. Nothing remarkable! Next I called the endocrinologist to discuss the headaches and the nurse told me that it didn’t sound like her headaches were growth hormone related. She said that inter-cranial pressure was a side effect but caused severe headaches. Amelia has only described hers as medium and they seem to pass quickly. This Wednesday we will meet with the endocrine doctor for our scheduled follow-up. In the mean time we have run out of growth hormone as of today and will take a planned break to see if the headaches subside.

It is ironic that we ran out of medicine today because we were planning on stopping on Wednesday any way. We were graciously given free drug from the manufacturer for the past few months but will no longer be able to receive free drug without submitting a recent tax return…. Do you understand the cycle of chaos?

I’m really worried about the headaches. Four year olds don’t usually have headaches. I am hoping that with the growth hormone out of the picture the headaches will cease and I will be able to relax. (Like I can do that?) If the headaches continue then we will get an MRI and MIBG. That will clearly rule out relapse and will ultimately increase the medical expense pile for this year but why should I think about that now?

Today we went out for our community Halloween parade. It was a beautiful afternoon down at the beach. Amelia dressed up as Raggedy-Ann and looked adorable. Kathryn was a Cowgirl and Ben was an Army guy. The children all enjoyed running around with their friends at the playground. This week will be full of sugar and spice. Please keep us in your thoughts and prayers and specifically for NO HEADACHES! Thanks.

Monday, October 16, 2006 8:26 PM CDT

Amelia is doing well and enjoying school. She seems to be feeling some side effects from the growth hormone therapy lately in spite of her lack of growth. She’s been having some aches and pains here and there coming and going. Her legs, her back, her head. Nothing that is persistent or disabling but notable. Rather frightening for me since anything can look like a relapse. We were given a six month break from scans back in July and I thought I would like that, but at this point I’m not so sure. I am trying to keep all of my worries in God’s hands but I have found this to be a trying time for me. My hope is to see some growth by Christmas. Keep her in your prayers.

We spent a lovely afternoon in the pumpkin patch with a NB family that lives a little south of Annapolis. Erin Keenan (5) and her Mom and brother and sister. It was nice to finally meet them and swap stories on a sunny afternoon. It’s always nice to talk to someone who really knows where I’ve been, and Melinda does. They are still making regular trips up to Sloan-Kettering for antibodies. Anyone who has done that before knows that it’s not really something you look forward to; you just do it. Hopefully we will be able to keep in touch and get the kids together again soon.

We drove out to Banner Elk, NC a couple of weeks ago for my cousin Ted’s wedding. It was a lot cooler than I had expected and rather wet. One afternoon we drove up to Grandfather Mountain for a little fun. The kids loved climbing all of the giant rocks and the trees. We only wished we had planned a little extra time for recreation. The wedding was lovely and we are thrilled to have Jen in our family.

Next month we will meet with the endocrinologist for a follow-up. Until then.... thanks for checking up on us.

Sunday, September 6, 2006 6:32 PM CDT

She stands there with a serious look on her face the morning of her first day of pre-school. It has been raining all morning but the clouds pause just long enough for a picture. She is four years old. She is calm and quiet. She is going to be fine. I ask if she would like to take the bus home today or if I should pick her up. She says she's taking the bus. I am surprised and a caught a little off guard. I don't know the bus number or where it will deliver her. I am the nervous one. She's so small she's going to bounce all over the place. She is so excited. She is going to have a great day. The bus dropped her off right in front of the house. Yipee!

Tuesday, July 18, 2006 3:47 PM CDT

** Ultrasound was clear.

Good news about the scans. No evidence of disease and we get six months off. There is a little something on her spleen that they saw on the CT that they want to ultrasound but I’ve been told not to worry. Right? Ultrasound is being scheduled now.

Amelia was a trooper preparing for her scans. Unfortunately the MIBG guys didn’t run things as smoothly as usual and that created some added stress. In, out, start, stop, lie still, ugh! It’s a lot for anybody. They didn’t like that she pulled herself up the table a few inches but they didn’t see any reason to start over. I don’t like it when they don’t have their act together. The mibg scan takes at least an hour and a half to complete and she’s not sedated. It makes it hard for me to prepare her for future scans. Within the first five minutes of fooling around she looked at me with a long face and said, “I want to get out of here.” By the time the scan ended she was fast asleep.

Our first shipment of growth hormone arrived today. We will have a nurse come out to teach us what to do in the next couple of days and then we begin. I am excited for her and scared at the same time. The doctors say this drug will not cause neuroblastoma cells to grow, but it does cause all other cells to grow. Ugh! I know she really wants to be bigger and blend in better. She doesn’t like the “she’s so little for a four year old” attention or the comments about her funky hair. Let’s hope it’s all smooth sailing.

Monday, June 19, 2006 10:04 PM CDT

We are good. I know no news can mean so many things but for me it usually means I’m just too busy living to write a decent update. Amelia continues to have clean scans. Her big news of late, which is really small news, is that she is not growing. Growth Hormone Deficiency is a late effect we can both live with. Unfortunately it will require daily injections to get her four-year-old body out of 24-month-old sized pants. We will be starting that therapy in the next couple of weeks.

Summer is here and Amelia is swimming like a fish. She just can’t get enough of it. She has begged to join our community swim team like her brother and sister but she’s just too small. She’s an honorary Hammerhead and very proud of it.

We are heading into the scan-zone soon so my mind is busy blocking out other news. I will update with all that and more mid July. Thanks for checking up on us. xo

Saturday, February 4, 2006 10:20 PM CST

Nothing new to talk about. The shingles linger... There are still some hazy patches on my cornia. I just want this to be over! Oh I got a bill from my personal doctor a few days ago for $3.00! It even came with a return envelope. I think that's the the bill I'll pay this week. Enough about me.

Amelia is really enjoying school. She has been the flag girl, the weather girl and the star of the week. This week she was the calendar girl. I have not forgotten to pick her up yet either. That was her greatest worry when she started school.

Ben has been doing great in school inspite of his big cold. He had a bloody nose twice at school on Friday.

Kathryn is trying to talk me into getting a puppy. I told her that I want a third or fourth grade dog. NOT a puppy. I just know the kids would really love to have a dog of our own but I don't think I have the patience to take on a puppy.

I'm having some thoughts about finding a new automobile since I can't get all of the doors to unlock and the fuel gauge can't be trusted. I just can't figure out how to fit the whole gang into a sports car.

Monday we go for Amelia's port flush and counts. The numbers have been a bit funny lately so I'm hoping for a little good news. Lately I feel like I'm just waiting for something to be wrong. It's hard to put those thoughts away but I usually do.

All for now. Just wanted to say hi.
Allison

*******Update February 9, 2006*******

Our visit with the doctor went well. I almost forgot what we were doing in the morning and then I had to turn back to the house because I grabbed the wrong red bag. So much for being early. For a minute I thought I was subconsciously trying to avoid going completely.

We had a nice visit with our favorite Dr. Hudspeth. She thought Amelia looked great. She was hoping that Amelia had grown some since our last visit but she has not. I don't think she's grown in six months or so. Now we have an appointment with the endocrinologist. It's also time for another visit with the cardiologist and about time for another round of scans. Ugh!

The good news.... is that her blood work looks much better than it had. Nothing funky. Nothing way out there. Just a bit of promise that nothing is lurking in the dark.

Speaking of the dark...please send up a prayer or two for two girls who we met in New York when we were all in remission getting antibodies. Laura and Emily. They have relapsed and are fighting the battle again.

Tuesday, January 10, 2006 8:00 AM CST

Merry Christmas Everybody! We wish you joy, health and happiness today and always.
Amelia is looking forward to “that guy” coming to our house. She won’t call him Santa. She just says, “That guy is coming.” She just can’t wait to find the Dora dollhouse she’s been dreaming about.
Now let me try and get you up to date with our world…

We had a delightful trip to Disney World in November, courtesy of Make-A-Wish and Give Kid’s the World www.gktw.org. We were able to see Mickey and Pooh and all of the princesses that Amelia wanted to meet. The kids called Amelia our “Easy-Pass.” They were quick to realize that we were getting very special treatment and didn’t have to wait long for anything. We rode more rides in a day than we ever thought we could, and had the greatest seats in the house for the Lion King performance. We left the parks every day completely exhausted only to find something terrific going on in the village of Give Kid’s the World. Parties, performances, horseback riding, swimming, special character visits, late night visits to the ice cream palace and in-house pizza deliveries were waiting for us daily. The days were long but fun and full of wonder. A couple of times I thought Mom and Dad were about to drop when Amelia would come to the rescue by falling asleep which would allow them to sit for a while with a cup of coffee and revive themselves. It was a privilege to have them join us.
Between Thanksgiving and Christmas Amelia had her MIBG scan and an MRI which both showed no evidence of disease. When you have a large deductible on your health insurance plan it doesn’t matter that you have had little time to prepare for Christmas. You just want to save a little money for the following year.
Blue Cross and Blue Shield has been incredibly difficult with paying our claims lately. Amelia’s oncologist offered to speak with them personally and had worked magic for us. Claims are finally being paid for stuff we had done two years ago! I still wish they would offer to pay for the pain and suffering they have caused me. Every day I receive a letter of denial. I have to ignore it knowing full well they will eventually pay the claim. You get the idea.
Today I am just trying to get this onto our site so that you have an idea of what we’ve been up to. I know I had more to say but this is all you get for now. I’d tell you about the little guy that we met about a year ago in the oncology clinic at Hopkins and lives just a town away but you can check his website for yourself. www.gavinstormthomas.com I’d tell you how great is having Amelia start pre-school if I were not suffering with the shingles that I caught from her Varicella vaccination. I had no idea it could be so painful. The fact that they are covering the left side of my face and eyelid and causing amazingly wild head and ear pain is enough to take the joy out of my little girl’s first days of school. Luckily the Drs. said the kids should not be affected by my outbreak since they have all had the vaccine. I just need to stay away from the rest of the world. Ugh! I thought this was going to be a quiet and relaxing week…
Thanks for being patient with my updates. Thanks for your thoughts and prayers. Thanks for your friendship. Happy 2006! Oh, and a thousand thanks to all of you who so graciously donated your holiday lunches to lunch for life! You brought me joy!

Saturday, October 15, 2005 9:52 AM CDT

Our recent scans continue to show no evidence of disease. Amelia is doing very well. It has officially been two years since she received her stem cell transplant!

She is very proud to show her new smile created in part by her kind dentist and a bucket of money. I didn't realize that she would require over four hours in the OR but everything went well. Now I just pray she doesn't fall and bang her mouth against anything before these beautiful teeth begin to fall out naturally. The dentist has discovered that her baby teeth have short roots due to the effects of her chemotherapy and may fall out prematurely. The fun never ends around here.

Speaking of fun, Amelia will be taking her family and grandparents to Disney World just after Thanksgiving for her Make-A-Wish trip.

I have been overwhelmed with my crazy, mixed-up life lately and apologize for not posting anything for a long while. Thank you for not giving-up on me.

XOXO

Wednesday, May 25, 2005 1:44 PM CDT

Just a quick note to get the word out that all of Amelia's scans looked great. She does have an ear infection, and a few thousand dollars worth of dental work to take care of, but who cares about that when we have clean scans to celebrate!!!!!! Thanks so much for your thoughts and prayers.

Friday, April 22, 2005 10:21 PM CDT

Thanks for checking in on us. I know you’ve been waiting for an update for ages so here goes.

Amelia is doing fine. She is deep into 12 k (27 lbs.), and it shows! She hasn’t gained much in height but she’s really filling out. Occasionally I get frustrated with the super slow growth that is now her norm. Her worn-out shoes and hemmed pant legs remind me that she is growing at a snails pace. It’s enough to make me crazy. I have no problem with the idea that she will always be small but I can’t help but get tired of her wardrobe. It’s a good thing that the seasons are changing and that capri’s are in style.

Amelia is still getting rashes on her hands and the back of one leg. I think it’s food related but 1ydrocortisone keeps it in check. I wish I could figure it out though. She continues to have breath-holding spells on occasion, which make me crazy. Her only medical crisis was an ear infection, which she got while on vacation in Florida. It cost us a day in a local ER that did not know what to do with a mediport. Good thing it was her ears.

Our visit to Florida was planned to possibly welcome into the world my sister’s third child who was due that week. She was not born until a week or so later. Instead we built a swing set in the back yard and did a lot of spin-art and margaritas with my nephews. I’m glad we were able to enjoy that time with my sister and her family for when baby Evelyn finally was born our world was changed. Evelyn was born with a severe birth defect involving her brain. The doctors say she will not live long. Subsequently I made another trip to Florida about a week ago to meet Evelyn and hug my sister and her family tight. Evelyn is almost three weeks old now and physically quite robust. It is hard to understand how stuff like this happens. It is hard to explain it to my kids. It is hard.

Kathryn and Ben are deep into spring season ball games. Kathryn has joined a girl’s softball team and is finally learning the game. She has a great eye for hitting the ball and is working with her glove. I think she will surprise herself by the seasons end. Ben is playing T-ball for the first time and is doing well. It is so much fun watching these little guys learn the game. I spend half of my time just laughing at the confusion and success. It’s good therapy.

Amelia had her first visit to the dentist last week and cooperated like a star. Now they want x-rays to make sure the decay is not deeper than they think. I hope she keeps cooperating. It was difficult to establish any kind of oral care while her teeth were emerging and she was receiving chemotherapy. I really hope they can fix things up without too much work.

Next week we talk to Make-A-Wish about a trip to Disney and see the cardiologist to determine whether we can take her off the enalapril. Quarterly scans are scheduled in NY for May 19 & 20. Never a dull moment.

I am thankful for where I am and what I’ve got. I am often overwhelmed, exhausted and confused with what I should be doing. I am striving to be a better parent. I am trying to take better care of me. I am here. Thanks for checking on us.

Saturday, January 29, 2005 6:15 PM CST

Happy News! Amelia’s scans are clean. We just returned from a quick trip to New York for quarterly scans and all is good. Bone marrow and urine results will come in next week. Dr Kushner wants Amelia’s hearing tested again now that she is really talking. He senses she has more hearing loss that we thought. We will get that tested the end of February. My opinion is that the loss is minimal.

It was nice to see our old “N” friends and officially meet Mark Dungan, aka Sydney’s Super-Dad. Unfortunately we didn’t get to meet Sydney this time. Amelia was suffering with a cold and so we had to keep our distance from many folks. Poor timing for a cold. It was nice to see Matthew, Emily, Tripp, Kevin and all of the other kids we hadn’t seen in a long time. It was also nice to see their parents.

Latisha and Cat looked great and were busy as usual and Vicky was constantly appearing with more stickers for Amelia. We even got to see our fantastic surgeon from Hopkins who is now working at Sloan-Kettering, Mark Kayton. Maybe we’ll let him remove Amelia’s medi-port one day…

Aside from a few days of discomfort from the bone marrow biopsies, and an annoying cold, Amelia enjoyed her trip to New York. We will return for the next round of scans in May. By then she should be able to work the elevators at the RMDH herself to go visit with Ms. Joanne…she’ll be three. Yikes!

It’s hard to believe that we are approaching our two-year mark since diagnosis. I am thankful for every minute we have been given. She is delightful. Kathryn and Ben are beginning to enjoy her more and more as she is now able to really communicate and play with them. Today I sipped my coffee as the three of them just sat on the floor in front of me playing with legos. For a brief moment it was as if nothing bad had ever happened.

Thanks for your concern and kindness. I am now going to exhale. Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhh………………….

Thursday, January 6, 2005 7:17 PM CST

Happy New Year! I have been waiting for the New Year to come so we could jump right into our quarterly scans. Let's just do it. Well, after careful thought and after having the scans set up at Hopkins, I have decided to go back up to Sloan for scans this time. It's a constant battle in my head as to what is best for Amelia but that doesn't make the decision-making any easier. I just feel like this is what I have to do this time. It will be strangely nice to see the Neuroblastoma family up in New York. There isn't another place in the world with as much Neuroblastoma per square mile around. I find it a comforting community. So, scans have been cancelled at Hopkins and are being set up at Sloan. I just want it done yesterday.

Ben began the New Year with a stomach virus. So far the rest of us have been spared. Kathryn is coming down with a new ailment daily. It seems to be attention seeking and breaks my heart. I remember wanting to be sick when I was young too. My older sister needed to be hospitalized and she sure got all the attention. I am trying to get Kathryn through this "illness" she has created without hurting her feelings. I need a full time therapist...

Amelia is doing great. She is really blooming into a beautiful little kid. She is looking forward to going to New York. Innocence is wonderful. All for now. Thanks for checking up on us. Please pray for clean scans.

Tuesday, December 14, 2004 8:27 PM CST

Holiday Blessings Everyone! It’s been too long since my last update.

Amelia continues to be disease-free. She is happy, healthy and growing big and strong. (Over 11 kilos!) Her nose continues to run as it has since her first round of chemo 21 months ago. Her appetite is huge. She still loves my beef bbq. Her hair is beginning to fill-in pretty well. She likes to ride her new trike and swing “popcorn high” on the swing out back. She talks a lot and likes doing most things by herself. Pooh bear is still big. She’s two and a half now. She continues to have monthly check-ups and quarterly scans.

Kathryn and Ben are working out a lot of feelings and challenge me daily. I know with time we will learn to get along better, but for now things are rough.

Kathryn is playing violin in this year’s holiday program at school. She is very enthusiastic about music. She is also enjoying gymnastics and perfecting her handstand. She is into anything American Girl or animal. She really wants a pet.

Benjamin was recently diagnosed ADHD. His biggest problem is oppositional defiance. He is presently being medicated and it seems to have had some impact. Ben is enjoying Kindergarten. He is beginning to read and write. He has always loved books and it has been great watching him read to himself. He also loves to draw. Ben is into anything superhero. He seems to think he can grow up to be one. He has great muscle strength and really enjoys gymnastics. He is my “Spiderman”.

My knowledge and experience with cancer has come in handy this fall as my best friend Joanne was diagnosed with non-Hodgkin’s lymphoma. She has two children 7 and 2. I never thought I would have to watch my dear friend fight for her life. I am glad I am able to help her through this. I didn’t think I’d know what to do for her but my instincts have served me well. I think I have made a difference.

Cancer continues to effect people I care deeply about. I have an ongoing prayer to God for them along with that for Amelia. Ultimately it’s all in His hands.

Thank you for checking up on us. Please sign the guestbook or drop me an email to let me know how you are doing. Happy holidays and Happy 2005!

Wednesday, September 15, 2004 9:07 PM CDT

We have “Happy News” about Amelia. She continues to show no evidence of disease (NED). We had a very busy day at Hopkins yet it couldn’t have run any smoother.

We started at 8am with a hearing test. She seems to have some high frequency hearing loss but all mid-range and low frequency hearing is fine. With all of the chemo and medications that she was exposed to, which are known to be toxic to ears, she has fared well.

Next was the EKG and Echocardiogram. Again, good news. Her heart is finally functioning within the normal range. After her stem-cell transplant, Amelia’s heart was damaged by the preservative that is used for freezing the stem-cells (DMSO). She has been on Captopril ever since to reduce the after load pressure so it could heal. Hooray for Captopril!

After cardiology we visited with Dr. Loeb for a bit. It was great seeing him. He always makes me feel good. I’m sure he knew I was nervous about the pending scans but he is such the optimist it’s contagious. Amelia weighed in at 10.5 kilos, which is a little over 23lbs. Her length was 81cm. She is finally growing out of her clothes!!!

Finally it was the big moment, the MIBG scan. Our Nuclear Medicine nurse, Mr. Ron, was there to sedate Amelia. He was there for us way back at the beginning of time when Amelia’s MIBG image was pretty scary. He taught me everything I know about reading the MIBG images. He is a great source of knowledge and comfort. I’m glad he was there for me. I think he was almost as relieved as I was to see a clear image. Now I could exhale.

After the MIBG scan I scooped up Amelia and we went to CT. She was half awake but fell asleep again on the CT table. Those scans were quick and easy. I even got to see a slice of Amelia’s brain. Ooh, ahh!

Before leaving Hopkins we nursed and then stopped for some sushi and a mango smoothie. Amelia was a little groggy but that didn’t affect the taste my lunch. It was time to celebrate.

I was very happy to get home in time to meet the school bus. The kids still don’t seem to believe me when I tell them we’re going to the hospital just for the day. Ben was asking me this morning where my suitcase was. I told him this was not that kind of visit. By 5pm my “Fabulous Fellow”, Dr. Hudspeth, called to confirm my readings of the scans. All is good. All is very good! Now maybe I can get some sleep. Please keep us in your prayers. They work.

Monday, September 13, 2004 8:28 PM CDT

I never feel like I have the time to update this journal yet I am always glad to know I have put some of the stuff I have running around in my head down in ink. You know what I mean.

Today Amelia and I went to Hopkins for the first step of the restaging process, the MIBG injection. In preparation for the injection Amelia needed to begin taking SSKI drops Sunday. SSKI is potassium iodide that will protect her thyroid from the MIBG 131. It is a horrible tasting stuff that we call the "yucky medicine". Another one of the necessary evils...

We left for Hopkins early in the morning so that she could have her port accessed in the clinic before the 9 am injection. Over half way to the hospital we got a call that the dose had not yet been delivered and would be at least two hours late. Just when I thought this would be a quickie. So with a little extra time we had eggs in the cafeteria and caught up with some old friends from our days of treatment. We saw our friend Tommy first. Then Marina. These were the folks that kept our room spotless or came running when Amelia threw-up all over the place. They were kind people who really knew how much we valued their part of Amelia's health. We also saw Dustin and his mother Beth. We will pray extra for them for Dustin needs yet another miracle. Lastly we saw Rob who spotted us a few bucks for a mango smoothie. Finally the dose arrived and we completed our mission. It was about noon.

Tomorrow we have jungle gymnastics after school with Ben and then the back to school open house. It is also my 13th anniversary.

Wednesday we head back up to Hopkins early with a battery of tests all day long. We begin the day at 8am with audiology, then an echo and ekg, then a clinic visit, and then the MIBG with sedation and finally a mess of ct scans.

Don't ask me what I'm doing Thursday! Ok, if you must know I'll be going to the county fair.

I think I'm exhausted already.

Please keep us in your thoughts and prayers as we carefully look for things we hope we never find.

Love and hugs to you too, Allison

Saturday, September 4, 2004 10:40 PM CDT

Hi there. I know it’s been a while since my last entry but I’ve been busy trying to reestablish my household. I have a lot of kinks to work out of Kathryn and Benjamin (and myself). They are finding the most interesting ways of getting my attention. I know it’s all part of the healing process but I never thought it would be so hard. I’m really looking forward to Wednesday when both of them will be going to school. I think the daily routines of school will aid me in establishing good routines at home. Let’s hope so.

Kathryn had her first week of school last week. Ben had one day. They are both happy with their teachers and classmates. We’ve been walking to school in the morning. Amelia loves going to school. She especially loves stopping to play at the playground on our way home.

Amelia is doing great. She is making bigger sentences like: “Me brush me hair.” and “Doctor, me butt hurt.” and “Momma, Me bump me head on stair.” She also frequently asks to go to the hospital for a Band-Aid. She is still enjoying the pool or bathtub. She begs me to let her go under the water. She doesn’t like the baby pool. She now performs some kind of floor exercise when she’s excited. She puts both hands down and lifts one leg than the other. She does a hotdog roll. She spreads her legs and does funny things with her arms. She runs in circles and knows all eyes are on her. She has refined her sense of self. The other night she had a total body experience with a sandbox. I never realized how sheltered her life was. She is living big.

We have scans do the end of the month. Amelia will begin to be followed at Johns Hopkins again now that we have been kicked out of the 3f8 treatments at Sloan-Kettering. I will miss MSKCC and all those I encountered there and at the Ronald McDonald House. As crazy and difficult as those two week visits were I had it all figured out and enjoyed the community of folks I encountered. It’s hard to explain how close I feel to so many children, their families, the doctors, nurses, and staff at the Ronald McDonald House. Our paths crossed and I will never be the same.

I recently went to a pool party at a friends house. It was a kind of bon voyage for a couple of families who are moving out of the area. It was wonderful to see so many of my friends. We all met about six years ago through La Leche League with about one child apiece. Now we have two, three or four. Yikes! We are a circle of friends who met in a library in need of validation, support, and friendship. We formed a playgroup that we swore was for the children yet knew it was for our own sanity. We supported each other through childbirth, stillbirth and miscarriages, through divorce, separations, and marriages. We brought food to the family who needed it the most. We pulled together for whatever, whenever.

My circle of friends did amazing things for my family and me when we were in the trenches with Amelia. I will never forget the countless meals and comfort that I received from them. The night before Amelia’s first surgery Sherry was with me as I cut the hair off the bump on my baby’s head. She brought us fruit and a puppet and other goodies. Robbie stayed with me during surgery and Laura helped settle Amelia so I could take a quick shower without worry. Teresa and Joanne cooked everything I never knew I loved to eat and Cathy and Chere and Shannon and others visited with me and made sure I had what I needed and that Amelia was in a million prayers. I never knew what this circle of friend would become for me.

My Kathryn goes to sleep every night and wakes up every morning listening to a CD from the American Girls Co. It is titled “Circle of Friends”. I recently looked at the lyrics and would like to share some with you.

Circle of friends, Circle of friends, We care for each other, This circle of friends. No matter what happens As life turns and bends, We always can count on This circle of friends. The seasons keep turning, And this much we know- Our friends become dearer And our families grow. And wider and wider The circle extends. We all must give thanks for Our circle of friends. Sharing life’s journey As the path turns and bends We all need each other, This circle of friends.

Thanks guys. I love you.

Tuesday, August 10, 2004 10:13 AM CDT

Amelia and I returned home from our trip to NY early. It was unanimously decided that her breath-holding spells were too difficult to control while in treatment. She had two spells the first week and another episode the second Monday. We tried to medicate her with more pain medicine, and then added valium, but nothing seemed to keep it from happening. The spells came with no warning and were getting harder to reverse. What I’m saying is that she was not breathing for a long time. That can’t be good for anyone.

So it looks like our 3f8 antibody treatment has now ended. The doctors believe that 5 ½ cycles of treatment is adequate. The risks of continuing treatment started to out weigh the benefits of more cycles.

I must admit that not having to endure another 3f8 minute is rather uplifting. Each cycle was unimaginable. I understood the need for the treatment but the treatment itself was insane.

The kids and I are leaving for a week-long vacation on Thursday. I am still coming down from our antibody experience and am looking forward to some R&R. If only the kids would let up a little… They are making me crazy.

Friday, July 30, 2004 4:40 PM CDT

What a week we've had! I thought I would have been able to sit a write before now but it just couldn't be.

The medi-port placement on Friday was successful. Dr. "La-La", as Amelia calls Dr. La Quaglia, took good care of her. I got to see what the needle looks like today when we deaccessed her and YIKES! It's scarey. She didn't even blink when it came out so I assume it doesn't bother her.

Monday we began our sixth round of antibodies with a bang. About fifteen minutes into the infusion Amelia woke up in severe pain and could not catch her breath. I was very suprised that the pain came so quickly. You can never predict what will happen the first day of antibodies... I didn't expect her to stop breathing. She turned blue, but with alot of excitement and a few puffs from the big blue bag she recovered quickly. I, however, took longer.

The rest of the week we just made sure she got her second dose of dilaudid before there was any sign of pain, and then her third dose would come when the pain peaked. Hives were more the concern until Thursday. Thursday's treatment went great. Great just means less hives, same pain, etc. We got discharged around 11 a.m. and decided to stop by the playroom for a quick visit. Amelia was still loopy and agitated but wanted to pick up where she left off that morning with the playdough. We walked in and the table was occupied, and a little boy made a silly noise, and Amelia cried, and then went into a breath holding spell. As soon as I realized it was real I ran with her back to the bed area and once again she received alot of excitement and a few puffs from the big blue bag. Needless to say I'm fried and I am about to be late for my message. Pray for us. Please. I really don't like the color blue anymore.

Sunday, July 18, 2004 8:09 PM CDT

Where does time go? I have tried many times to sit down and write something but it’s been tough. I feel this underlying anxiety that exhausts me at times. Now that I’m back to parenting three kids at once instead of just one, I’ve got plenty of reason to be exhausted.

Thank you for all of the notes in our guest book. It’s funny how good it makes me feel to know you’re thinking of us.

Amelia and I are preparing for our next trip to NYC. We will be flying up on Thursday so that a medi-port can be placed in her chest on Friday. It will enable easy access to her veins for antibody treatment, blood draws, and future scans. She will likely keep it for a year or so. I hate the idea of putting something new into her body while she is doing so well. It will be different than the central lines of past because it will be under her skin, require less maintenance, and won’t stop our swimming. It’s small potatoes.

Speaking of swimming, Amelia is really enjoying her summer in the pool. She is out of diapers and living in her bathing suit. She flaps her arms now, kicks, and blows bubbles too. Sometimes she does it all at the same time but not often. She giggles, wiggles and knows she’s the cat’s meow. Sometimes I almost forget what we’ve been through. Life is good today.

We received a book from Tara Stout last week called “Alex and the Amazing Lemonade Stand” by Liz and Jay Scott. It’s a neat and true story of a little girl named Alex who is battling neuroblastoma and helping to find a cure for childhood cancer one glass at a time. Check out her story at www.alexslemonade.com. Thank you, Tara, for such a meaningful gift.

Ben and Kathryn are enjoying camp and bringing home all kinds of artwork, stories, and songs. I think they are going to really miss camp when school starts. Ben finally put it all together in his last swim meet and cut almost twenty seconds off his time. He has great potential!

The kids and I are looking forward to a trip to my sister’s house in Jacksonville, FL after we return from NYC. Kathryn and Ben were graciously treated to more than a month with Aunt Elizabeth and Uncle Brian last summer while we were down in the trenches here in Maryland. They made many memories and hope to make some more in our short week together.

I am continuing to clear the clutter from my home and my head. I’ve been killing weeds, moving furniture, and making frequent trips to Goodwill. I am nowhere near finished but am beginning to feel the effects. I found the top to my dresser last week.

Know anyone interested in a solid maple convertible crib in good condition? It was used lightly for seven years… I’m waiting for the consignment store to find room for it.

Well that’s all for now. I hope to update again after the port placement on Friday. Keep us in your prayers.

Monday, July 5, 2004 10:19 PM CDT

Welcome to Amelia’s web page. I’m glad you came to take a look to see what we are up to. I am hoping to get into the habit of journaling at least once a week. We’ll see what time allows.

We had a very busy weekend as a family. Saturday we drove up to PA to the Dugan family reunion. We were in the pool just about the whole day. Amelia had a blast. She loves to jump in face first. I count “One for the money, two for the show, three to get ready and four to go!” She jumps in smiling and then says “More money. More money?” She just loves the water. She scraped her foot as she jumped in once and complained only for a minute. It was her first pool boo-boo but it didn’t stop her.

It was great to see Grandmother, Aunt Pat, Uncle Ed, Uncle Larry, Aunt Carol, Cousins Carey, Kathy, Jill, Craig and Tim (with the incredibly long pony-tail), and of course little smiling James. We ate well, shared stories, and just enjoyed each other’s company. It was a very long day but too short of a visit. We plan to make another trip up later this summer.

Sunday we woke up just in time for our community bike parade. Kathryn and Ben rode bikes while Robert chased them on the scooter and Amelia and I strolled along. The parade finished at our community playground where we ate yummy snacks and played a while. It was getting hot. Fortunately the community pool party was about to begin.

Kathryn, Ben and I went to the pool for a couple of hours while Amelia slept at home with Robert. It was nice to have some fun with the kids in the pool. Ben picked up $3.42 in small coins from the bottom of the pool when they held the treasure hunt, and then he competed in the “Big Kahuna” contest trying to make the biggest splash. He had a bunch of fun.

If that wasn’t enough, after we were sent home running from thunder and rain we packed up and headed to Galesville for the Cox family annual 4th of July party. We saw many friends and proudly paraded around Galesville.

By 8 p.m. we were all tired and thought we would head home. But on the road back to Annapolis we realized we were just in time to watch the fireworks display from the Spa Creek bridge. So we did. Wow, it was great. And we got back to the van just before the big downpour. This is living! I’m beat. Thanks for visiting.

Sunday, June 13, 2004 8:46 PM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----