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!
Tuesday, January 10, 2006
Saturday, October 15, 2005
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
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
Friday, April 22, 2005
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.
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
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………………….
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 06, 2005
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.
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
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!
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
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.
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
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
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 04, 2004
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.
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.
Tuesday, August 10, 2004
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.
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
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.
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
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.
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 05, 2004
Amelia is now two years old.
Amelia is doing GREAT! Her cancer is in remission and she's enjoying life! If you were on the Eastport Bridge last night watching the fireworks display in Annapolis, you could have seen Amelia, a little concerned with the loud booms, but gleefully calling out the colors in the sky.
Its been about four months since our last report and the days have been busy. After getting home on 19 March and spending a few weeks around Annapolis, Allison headed for Florida on 14 April with Amelia, Benjamin and Kathryn to spend some time with her sister Elizabeth and the rest of the Bowes family in Jacksonville. After about a week of sun, sand and lots of fun, Amelia started to run a fever. An infection had developed in the two central lines that she has been receiving treatment through. On 25 April she was admitted to Wolfson Children's Hospital in Jacksonville, put on antibiotics and the central lines were
subsequently removed.
Amelia was released from the hospital on 4 May and returned to Annapolis on 8 May, just in time for her second birthday on 9 May. On the evening of 11 May
there was another fever, so it was off to Johns Hopkins Children's Center for a few days. There was concern that the infection had returned, but that was not so,
and Amelia and her Mom were home again on 14 May.
Then on monday, 17 May, it was off to Memorial Sloan-Kettering Cancer Center in New York for two weeks of monoclonal antibody immunotherapy. Amelia came home for Memorial Day weekend and a week later went back for three days of diagnostic testing. The tests showed no signs of Neuroblastoma. GREAT!
With her central lines gone, Amelia was introduced to Grandma's pool in early June and loves the water! A real water baby! June was uneventful -- Wow! -- and in three weeks Amelia will be back up at Sloan-Kettering for her sixth round of immunotherapy. The battle continues.
Allison has put up a web site at Caringbridge that she intends to update with significant happenings. You might want to check it out from time to time.
As always, thanks so much for you support and prayers. So far, so good, but it will be a few years before we can rest easy.
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.
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.
Saturday, March 20, 2004
Dear Family and Friends,
Today, 20 March, completes one year of treatment for Amelia. She and her mother arrived home last night after completing her fourth round of monoclonal antibody immunotherapy at Memorial Sloan-Kettering Hospital in New York. They have an eight week break before returning on 17 May for another two weeks of treatment and an additional three days of diagnostic testing. Unless the Neuroblastomia reappears, this will be the course of treatment for the next year or so; two weeks of treatment followed by an eight week break. It is expected that at some point Amelia's immune system will develop antibodies to the treatment, at which point the immunotherapy will be put on hold.
Amelia's body is slowly recovering from all of the harsh aggressive treatment that she has undergone. Her weight is almost up to 20 pounds, her hair is growing back nicely, she is beginning to enjoy eating once again, is walking a lot better, has more stamina, and is engaging in creative play with her toys. She doesn't talk much, but understands everything being said and is quite adept at signing. Her doctors tell us it'll be at least a year before she catches up with her peers.
Right now we're all very happy to be away from hospitals and doctors for awhile. The Hantske family is together once again and looking forward to a beautiful spring, a happy Easter and a healthy, happy Amelia.
Our many thanks for all of your support this past year, and please continue to pray for this precious child.
Monday, February 16, 2004
Dear Family and Friends,
Amelia's treatment continues, and so far so good. She recently completed round three of her monoclonal antibody immunotherapy, got home for the long weekend, and heads back up to New York on Tuesday for a couple of days of testing. She and Allison are expected back home on Friday, and they'll have a two week break before starting the fourth round of immunotherapy on 8 March.
After the March round of immunotherapy (which causes the body's own immune defenses to attack neuroblastoma) we expect the frequency of treatment to decrease to about every other month. As with all other aspects of her treatment, we're never quite sure until it really happens. While not doing other therapy, Amelia is on Accutane, which causes neuroblastomia cells to behave like normal cells. She will be on that for about six months.
With chemo and radiation therapy behind us, we're hopeful that Amelia will start growing normally and put on some weight. She's gaining strength and some hair is beginning to return. I've attached a picture from last week.
Thanks for all your thoughts and prayers. Please keep them coming.
Saturday, December 20, 2003
Dear Family and Friends,
The past month has been a busy one for the Hantske family. Amelia's treatment continues as planned and she is handling it well. Let me update you.
The immunotherapy during the period 18 through 28 November at Sloan-Kettering went well. It is not a pleasant process as there is nerve pain involved during antibody injection. To handle that, Amelia receives morphine during treatment, but there is lingering muscle pain afterwards. The daily routine is to go to the hospital, receive treatment over about a four hour period, and then return to Ronald McDonald House for the rest of the day. Not fun for anyone, but tolerable.
We took Kathryn and Benjamin up on the 26th to spend Thanksgiving with Amelia and Allison. No treatment on Thanksgiving, so Mayor Bloomberg arranged for comfortable viewing of the Macy's Thanksgiving Day Parade from the Olive Garden restaurant on Times Square for all of the families staying at Ronald McDonald House. Everyone had a good time and Amelia met the Mayor.
The 28th was the last day of treatment so we returned to Annapolis that night with everyone. The Hantske family was all together at last, for a couple of weeks, with intermittent visits to Johns Hopkins. The attached picture is from the first snowfall of the season on 7 December.
On 13 December Robert drove the family to New York, returning the next day with Kathryn and Benjamin. On the 15th Amelia had bone marrow biopsies conducted and was marked up in preparation for radiation therapy that started on the 17th. She'll have seven days of that, two sessions a day, weekends and Christmas excluded. Then after a weekend of rest, the second session of immunotherapy starts on the 29th. It will run through 9 January, followed by a three week break. Robert and the children will head up to New York next Wednesday to spend Christmas Day with Amelia and Allison.
Present plans, always subject to change, call for a return to Sloan-Kettering on 1 February for round three of immunotherapy during the period 2 through 13 February, with round four running 8 through 19 March.
It has been a busy 2003. For those of you that did not receive all of our Amelia Reports during the year (this is number 15) and want to see what you may have missed, they are all available at http://home.comcast.net/~tpdugan/ We're looking forward to things slowing down a bit in 2004. We wish you all a very Merry Christmas and a Happy New Year.
Thanks for your continued prayers and support.
The past month has been a busy one for the Hantske family. Amelia's treatment continues as planned and she is handling it well. Let me update you.
The immunotherapy during the period 18 through 28 November at Sloan-Kettering went well. It is not a pleasant process as there is nerve pain involved during antibody injection. To handle that, Amelia receives morphine during treatment, but there is lingering muscle pain afterwards. The daily routine is to go to the hospital, receive treatment over about a four hour period, and then return to Ronald McDonald House for the rest of the day. Not fun for anyone, but tolerable.
We took Kathryn and Benjamin up on the 26th to spend Thanksgiving with Amelia and Allison. No treatment on Thanksgiving, so Mayor Bloomberg arranged for comfortable viewing of the Macy's Thanksgiving Day Parade from the Olive Garden restaurant on Times Square for all of the families staying at Ronald McDonald House. Everyone had a good time and Amelia met the Mayor.
The 28th was the last day of treatment so we returned to Annapolis that night with everyone. The Hantske family was all together at last, for a couple of weeks, with intermittent visits to Johns Hopkins. The attached picture is from the first snowfall of the season on 7 December.
On 13 December Robert drove the family to New York, returning the next day with Kathryn and Benjamin. On the 15th Amelia had bone marrow biopsies conducted and was marked up in preparation for radiation therapy that started on the 17th. She'll have seven days of that, two sessions a day, weekends and Christmas excluded. Then after a weekend of rest, the second session of immunotherapy starts on the 29th. It will run through 9 January, followed by a three week break. Robert and the children will head up to New York next Wednesday to spend Christmas Day with Amelia and Allison.
Present plans, always subject to change, call for a return to Sloan-Kettering on 1 February for round three of immunotherapy during the period 2 through 13 February, with round four running 8 through 19 March.
It has been a busy 2003. For those of you that did not receive all of our Amelia Reports during the year (this is number 15) and want to see what you may have missed, they are all available at http://home.comcast.net/~tpdugan/ We're looking forward to things slowing down a bit in 2004. We wish you all a very Merry Christmas and a Happy New Year.
Thanks for your continued prayers and support.
Monday, November 17, 2003
Dear Family and Friends,
Amelia was released from the hospital on about 20 October. She couldn't come home because she was required to be within 15 minutes of the hospital due to her low resistance and need for immediate medical intervention in case of infection. So she and Allison moved in with Aunt Eileen, who lives just outside the Baltimore Beltway. Within a few days she had a fever and was back in the hospital. All went well and she was back at Aunt Eileen's by Sunday. Then it was back and forth to the hospital every few days for lab work, diagnostic testing and evaluation. The doctors were pleased with everything and started the wheels rolling for the next adventure.
Amelia and Allison were up in New York the first week of November for the doctors at Memorial Sloan-Kettering Cancer Center to run their own battery of diagnostic procedures to confirm the findings from Johns Hopkins that Amelia's cancer is in remission. Remission sounds a lot better that it really is. It means that they can't detect any signs of active cancer, but it doesn't mean that it won't be back. The next courses of treatment; immunotherapy using a monoclonal antibody to get the body's own immune defenses to attack neuroblastoma; radiation therapy to prevent the disease from regrowing in high-risk sites in the body, and administration of isotretinoin (also known as Accutane and cis-retinoic acid) to cause the cancer cells to behave like normal cells, are all directed towards ensuring that it doesn't come back. It will be a few years before we know just how successful all of this has been.
Amelia and Allison finally moved home on Friday, and on Sunday Lorraine and I took them up to New York where they will spend the next two weeks while Amelia receives the first round of immunotherapy. This will go on for some time, initially in five week cycles. They are staying at the Ronald McDonald House on East 73rd Street, six blocks north of the hospital and a pleasant walk (in nice weather) for Allison. At other times there is a shuttle bus, but walking in NYC is faster. We expect they'll be home for Christmas, but Thanksgiving and New Year's Eve will be in New York.
For those that want details, here's a link to the Memorial Sloan-Kettering website and a description of the specific treatment that Amelia is receiving.
In December, in between immunotherapy, we expect one or two weeks of radiation therapy in Baltimore or New York. They do it a little bit differently at each location, and although both ways work, Allison is still weighing the pros and cons.
Please keep the Hantske family in your prayers.
Amelia was released from the hospital on about 20 October. She couldn't come home because she was required to be within 15 minutes of the hospital due to her low resistance and need for immediate medical intervention in case of infection. So she and Allison moved in with Aunt Eileen, who lives just outside the Baltimore Beltway. Within a few days she had a fever and was back in the hospital. All went well and she was back at Aunt Eileen's by Sunday. Then it was back and forth to the hospital every few days for lab work, diagnostic testing and evaluation. The doctors were pleased with everything and started the wheels rolling for the next adventure.
Amelia and Allison were up in New York the first week of November for the doctors at Memorial Sloan-Kettering Cancer Center to run their own battery of diagnostic procedures to confirm the findings from Johns Hopkins that Amelia's cancer is in remission. Remission sounds a lot better that it really is. It means that they can't detect any signs of active cancer, but it doesn't mean that it won't be back. The next courses of treatment; immunotherapy using a monoclonal antibody to get the body's own immune defenses to attack neuroblastoma; radiation therapy to prevent the disease from regrowing in high-risk sites in the body, and administration of isotretinoin (also known as Accutane and cis-retinoic acid) to cause the cancer cells to behave like normal cells, are all directed towards ensuring that it doesn't come back. It will be a few years before we know just how successful all of this has been.
Amelia and Allison finally moved home on Friday, and on Sunday Lorraine and I took them up to New York where they will spend the next two weeks while Amelia receives the first round of immunotherapy. This will go on for some time, initially in five week cycles. They are staying at the Ronald McDonald House on East 73rd Street, six blocks north of the hospital and a pleasant walk (in nice weather) for Allison. At other times there is a shuttle bus, but walking in NYC is faster. We expect they'll be home for Christmas, but Thanksgiving and New Year's Eve will be in New York.
For those that want details, here's a link to the Memorial Sloan-Kettering website and a description of the specific treatment that Amelia is receiving.
In December, in between immunotherapy, we expect one or two weeks of radiation therapy in Baltimore or New York. They do it a little bit differently at each location, and although both ways work, Allison is still weighing the pros and cons.
Please keep the Hantske family in your prayers.
Saturday, October 11, 2003
Dear Family and Friends,
Good news! Just a little over a week after her stem cell transplant, Amelia's bone marrow is producing blood cells, telling us that the transplant worked. That's an important step along the treatment path and we're all very happy with her progress.
Sometime in the next week we expect Amelia to be released from the hospital, but she will be followed closely for a month or so while her resistance to infection builds up. Then it will be time for the next phase, radiation therapy.
We'll keep you posted. As always, thanks for your prayers and support.
Good news! Just a little over a week after her stem cell transplant, Amelia's bone marrow is producing blood cells, telling us that the transplant worked. That's an important step along the treatment path and we're all very happy with her progress.
Sometime in the next week we expect Amelia to be released from the hospital, but she will be followed closely for a month or so while her resistance to infection builds up. Then it will be time for the next phase, radiation therapy.
We'll keep you posted. As always, thanks for your prayers and support.
Saturday, October 04, 2003
Dear Family and Friends,
Amelia is much better today and we expect her to be out of intensive care in the next day or so.
Her recent experience is an interesting example of what complicated chemistry sets our bodies are. She was not responding to the medicine they gave her for congestive heart failure on Thursday. It occurred to one of her doctors that a chemical that is added to the stem cells prior to freezing to prevent them from being damaged is toxic to the heart. It is normally eliminated from the body after the transplant before it can cause a problem, but because of Amelia's impaired kidney function, maybe it was the source of her difficulty. The fix for this was an exchange transfusion, replacing Amelia's blood with fresh stuff, untainted with the toxic chemical. Bingo! Amelia's heart started working as it should, her cold feet warmed up, and by Noon yesterday she was off of the ventilator and breathing on her own.
Aren't doctors wonderful! We'll never know for sure just how that key diagnostic thought came to mind, but I think your prayers played a part. Thanks so much.
The next good news should come in about ten days, when we expect to see signs that the transplant was successful and blood cell production has resumed. We'll let you know.
Amelia is much better today and we expect her to be out of intensive care in the next day or so.
Her recent experience is an interesting example of what complicated chemistry sets our bodies are. She was not responding to the medicine they gave her for congestive heart failure on Thursday. It occurred to one of her doctors that a chemical that is added to the stem cells prior to freezing to prevent them from being damaged is toxic to the heart. It is normally eliminated from the body after the transplant before it can cause a problem, but because of Amelia's impaired kidney function, maybe it was the source of her difficulty. The fix for this was an exchange transfusion, replacing Amelia's blood with fresh stuff, untainted with the toxic chemical. Bingo! Amelia's heart started working as it should, her cold feet warmed up, and by Noon yesterday she was off of the ventilator and breathing on her own.
Aren't doctors wonderful! We'll never know for sure just how that key diagnostic thought came to mind, but I think your prayers played a part. Thanks so much.
The next good news should come in about ten days, when we expect to see signs that the transplant was successful and blood cell production has resumed. We'll let you know.
Thursday, October 02, 2003
Dear Family and Friends,
It has been awhile since our last update, and there has been a lot going on.
Starting with the latest developments, as I write this, Amelia is in Pediatric Intensive Care at Johns Hopkins being treated for congestive heart failure. She is a very sick little girl and your prayers are most welcome.
The seventh and final round of Amelia's chemotherapy regimen commenced on 23 September. This last dose was of such strength that, along with hopefully killing any remaining cancer cells, it completely destroyed her bone marrow's ability to produce blood cells (and thus her immune system). In conjunction with the chemo Amelia was given a lot of fluid, which she had difficulty eliminating. Administration of diuretics and insertion of a catheter in her bladder helped the process, and on 1 October she received an autologous stem cell transplant to reverse the bone marrow destruction and allow production of new blood cells (the stem cells were previously harvested from her blood and frozen in anticipation of the transplant). Fluid retention continued to cause problems, and last night her breathing became labored. She was moved to intensive care this morning and around noon time a breathing tube joined the host of other tubes plugged into her. Diagnostic testing identified the cause of her problem and she is now on medicine that should allow the heart to work better and clear up the problem. We're hoping for signs of improvement by morning. We'll let you know when this crisis has passed.
The support from everyone has been great, and is continuing.
Thanks so much
It has been awhile since our last update, and there has been a lot going on.
Starting with the latest developments, as I write this, Amelia is in Pediatric Intensive Care at Johns Hopkins being treated for congestive heart failure. She is a very sick little girl and your prayers are most welcome.
The seventh and final round of Amelia's chemotherapy regimen commenced on 23 September. This last dose was of such strength that, along with hopefully killing any remaining cancer cells, it completely destroyed her bone marrow's ability to produce blood cells (and thus her immune system). In conjunction with the chemo Amelia was given a lot of fluid, which she had difficulty eliminating. Administration of diuretics and insertion of a catheter in her bladder helped the process, and on 1 October she received an autologous stem cell transplant to reverse the bone marrow destruction and allow production of new blood cells (the stem cells were previously harvested from her blood and frozen in anticipation of the transplant). Fluid retention continued to cause problems, and last night her breathing became labored. She was moved to intensive care this morning and around noon time a breathing tube joined the host of other tubes plugged into her. Diagnostic testing identified the cause of her problem and she is now on medicine that should allow the heart to work better and clear up the problem. We're hoping for signs of improvement by morning. We'll let you know when this crisis has passed.
The support from everyone has been great, and is continuing.
Thanks so much
Wednesday, September 17, 2003
Final Scans Before Transplant Chemo Look Good
This is what a sedated MIBG scan looks like down in the Nelson Basement of Johns Hopkins. Amelia is fast asleep and strapped in tight so that she does not move during the scan. I am free to move around the room and watch the uptake appear on the screen. The entire scan takes over an hour beginning with Amelia being pulled between two large heavy plates that are held only a few inches from her body. Then the plates slowly move around her adjusting as they go to provide a three dimensional image. The bright spots indicate where the mibg isotope has been absorbed. Her sinuses, liver and bladder always show uptake as does neuroblastoma. I generally hold my breath for the first thirty minutes and pray for the remainder of the time.
Sunday, September 14, 2003
Preparing for Transplant
Amelia loved watching Kathryn and Benjamin swim at Grandma's pool even though she could not go into the water with her central lines.
Saturday, August 30, 2003
Sunday, August 17, 2003
A Night For Amelia
Dear Family and Friends,
Amelia and Allison left Johns Hopkins on Sunday, 10 August; six days post op. Allison was especially pleased to be liberated so soon after surgery since Grandma and Grandpa were en route to Jacksonville to retrieve Kathryn and Benjamin from their long vacation with their cousins Timothy and Julian (and Aunt Elizabeth and Uncle Brian). This gave Amelia and her mother a chance to readjust to home life and catch up on some sleep before the Hantske family would be five again on Tuesday.
After spending two additional days at Hopkins for post op checks and additional sophisticated testing, Amelia is enjoying a nice long weekend of family life before commencing round six of chemo next Wednesday. This should keep her hospitalized for about four days. She'll then head home for a few days while her immune system is being depressed and the various nasty side effects of the chemo set in. Based on past experience, she'll then be readmitted to the hospital for transfusions, antibiotics, etc. until her body starts to make its own blood cells and reestablish its immune system. This could take anywhere from five days to two weeks. It's the pits, believe us!
Anyway, we are progressing on the prescribed plan and with each treatment are getting closer to the end. We are thankful that there have been no set backs and are encouraged by this.
The benefit on 9 August organized by Robert's racquetball friends was well attended and quite successful. Our thanks to all that participated. A flyer for the 9 September event being held by the Annapolis maritime community is attached for your information.
Please keep the family in your prayers.
Monday, August 04, 2003
Dear Family and Friends,
After nine plus hours of challenging surgery today, Amelia's surgeons reported that they had successfully removed ALL of the primary neuroblastoma tumor from the abdomen. Couldn't have been any better result.
Amelia (and her mother, father and grandmother) came through surgery without a hitch. She'll be in the intensive care unit for a day or so, and hopefully home in about a week.
The support for the Hantske Family from everyone has been wonderful:
Robert's racquetball friends are sponsoring a fund-raiser on Saturday, 9 August from 6 to 9 pm at the Bay Ridge Clubhouse. For further information contact Fran Phillips at 410 757-7175.
The Annapolis maritime community is sponsoring a fund-raiser, "A Night For Amelia," on Tuesday, 9 September from 5:30 to 8 pm at the Port Annapolis Marina. For further information contact Arlene Berlin at 410 263-7997.
Thanks so much for everything.
Friday, August 01, 2003
Dear Family and Friends,
Since our last report Amelia has spent about ten days in the hospital waiting for her body to start producing blood cells. She came home a week ago and has been doing better every day. She looks pretty happy in the attached picture from yesterday.
On Monday morning 4 August 2003, five days short of her 15 month birthday, 18 lb. 8 oz. Amelia will undergo surgery to remove the primary neuroblastoma tumor from her abdomen. Recent ultrasound and CT scan examinations indicate that the tumor is approximately three centimeters at its widest point and has been reduced in size substantially from when Amelia was first diagnosed. The five rounds of aggressive chemo have worked well in attacking the tumor and preventing any others from growing.
Since the tumor is invasively surrounding the left celiac artery, which is located behind the spleen and stomach near the left kidney, the surgery will be long and difficult. The best of all possible results will be that the entire tumor is excised. If the surgeon considers the risk too great to be able to get it all, future chemo and radiation should take care of whatever remains.
After a hospital stay of a week to ten days, Amelia will continue to recover at home for a couple of weeks to regain some weight and strength before starting her sixth round of chemo.
It seems like a never ending nightmare for Amelia, but she has managed each hurdle remarkably well and with God's help and that of her medical team and mother, she will continue to do so until she is free from disease.
Please continue to pray for her and pray especially hard this weekend that the surgery and her immediate recovery period will be successful and uncomplicated.
We'll provide a brief update on Monday or Tuesday.
Saturday, July 12, 2003
Dear Family and Friends,
Time for an update. Amelia came home from the hospital yesterday after the start of round 5 of chemo. Just three rounds of chemo to go (plus a lot of additional treatment)! Since 20 March when first admitted to Johns Hopkins, Amelia and her mother have spent 80 days there, 70 as an inpatient. That equates to about 70% of the time.
As the chemo progresses, it is taking longer each time for Amelia to bounce back and start producing new blood cells. This is expected, and she seems to be holding her own. Test results so far are encouraging. Amelia has regained some weight, celebrated the 4th of July by walking for the first time, and when not held back by an IV line has been on the go ever since.
Amelia's Aunt Lisa and cousin Melissa had a terrific visit and are now back in Alaska. Sister Kathryn and brother Benjamin are still down in Jacksonville with the Bowes family. We'll probably retrieve them around the end of this month.
Thanks for all your thoughts and prayers.
Saturday, June 14, 2003
Cisplatin and Etoposide
Dear Family and Friends,
The latest round of chemo completed on Friday and Amelia came home a very happy but somewhat nauseous young lady. This last round involved two different drugs, Cisplatin and Etoposide (VP-16). Four more rounds of chemo to go, alternating between the two different drug combinations. Prior to this last chemo Amelia's peripheral blood stem cell harvesting was successfully completed. They now have what they need for a transplant at a later date.
The benefit dinner for Amelia hosted by Hillsmere Elementary School on 6 June was well attended. Allison, Robert, Kathryn and Benjamin thoroughly enjoyed seeing and visiting with so many friends. Amelia skipped the dinner and stayed home with us.
Now we wait for Amelia's blood count to drop, and then work its way back up so the next round of chemo can begin, probably week after next. It's very likely that she'll have to go back to the hospital for awhile next week while her resistance is at its lowest.
Allison's sister Lisa and niece Melissa are arriving from Alaska for a visit on the 18th. Lisa and Melissa will be taking Kathryn and Benjamin to Florida for a visit with Allison's other sister, Elizabeth, in Jacksonville. That will make things pretty quiet around here for awhile!
Please keep those prayers coming!
Saturday, May 31, 2003
Dear Family and Friends,
Wow! Has it really been three weeks since our last update? I guess we've been busy.
Amelia has been back and forth to the hospital in the past weeks for tests, for chemo and to build up her blood counts. She is receiving red blood cells as I type this, and we expect her home this evening for a few days. The GREAT news is that her tests showed DRAMATIC improvement!
A key diagnostic test is the Metaiodobenzylguanidine (MIBG) Scan. MIBG uses a radioactive marker that is attracted to neuroblastoma cells. In her first scan, Amelia looked like a Christmas tree, with indications of neuroblastoma cells in her head (where she had just had surgery to remove a tumor), in her abdomen (which also had surgery) and in one of her legs (which was a new finding). In the most recent scan there was no indication of neuroblastoma cells in her head or leg and the tumor in her abdomen appeared to be smaller. A repeat bone marrow biopsy also came back negative, indicating that there is still no bone marrow involvement. This is all encouraging news, but there is still a lot of treatment ahead.
After the tests Amelia had a third round of chemo and on Tuesday will undergo peripheral blood stem cell harvesting with an apheresis machine. The stem cells will be frozen and used for a transplant at a later date when treatment will have destroyed Amelia's ability to produce blood cells on her own (and will hopefully have also destroyed all of the remaining neuroblastoma cells).
Allison has checked her email a few times over the past few weeks, but hasn't found much time to respond. Amelia keeps her busy most of the time, and when she able to break free, there's always Kathryn and Benjamin (and Robert!). She was able to make it to Kathryn's birthday parties (home, school, friends). We're hopeful she'll be able to make Benjamin's party this coming week.
Support from everyone continues to be overwhelming and is much appreciated. Kathryn's school, Hillsmere Elementary, is hosting a benefit spaghetti dinner for Amelia on Friday, 6 June, from from 6 to 8:30 p.m. Maybe we'll see some of you there.
Keep those prayers coming!
Sunday, May 18, 2003
A Thousand Paper Cranes
Aunt Lisa sent us more than a thousand paper cranes from her sixth grade class today. An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury. The crane in Japan is one of the mystical or holy beasts (others include the dragon and tortoise), and is said to live for a thousand years. Aunt Lisa's class has only one wish and that is for Amelia's health.
Friday, May 09, 2003
Dear Family and Friends,
Sorry that you all couldn't join in the ice cream, cake and giggles today at Amelia's first birthday party. It was a good time, enjoyed by all, but particularly by Amelia.
Amelia finished her second round of chemo a couple of weeks ago in pretty good shape. She got home for a few days, then with a slight fever was back in the hospital until last Wednesday. Because her resistance to infection becomes nil for a period of time following chemo, any hint of a problem results in readmission and a course of antibiotics.
She'll be in and out of the hospital next week for various tests and by Friday will probably have started round three of chemo.
Allison's sister Elizabeth is back up from Florida with her two sons for awhile to help out. We've had wonderful help from friends in the local area who have been driving Allison and Amelia to medical appointments, driving Kathryn to school, and being of assistance in so many ways. It's a great support team that we have!
As busy as Allison is with Amelia, she's still finding time to check her email and has a laptop with her when at the hospital.
Keep those prayers coming!
Thursday, April 24, 2003
Dear Family and Friends,Round Two of chemo for Amelia started Wednesday night and she seems to be tolerating it a bit better than the first round. This was expected, as the first round was shortly after surgery when she was weaker to start with. She is receiving the same three drugs as last time, Cyclophosphamide, Doxorubicin and Vincristine.
Amelia thoroughly enjoyed Easter, particularly all of the colorful eggs. It was wonderful to have her and Allison around for a few days.
There have been a number of requests for information on where contributions can be sent. Amelia's bank account is:
Amelia P. Hantske
Account No. 2701175008
Navy Federal Credit Union
PO Box 3100
Merrifield, VA 22119-3100
Keep those prayers coming!
Saturday, April 12, 2003
Dear Family and Friends,
A short update for you. It has been a week of ups and downs for Amelia and her family. Amelia was released from the hospital late Monday night. On Tuesday the Johns Hopkins visiting nurse service came over to check on Amelia and give Allison instruction on how to deliver medicine to Amelia via the central line which is surgically implanted in her chest.
On Thursday Amelia had a scheduled oncology visit plus an MRI. After a very long day at the hospital they both arrived home exhausted. Unfortunately, Amelia did not do well the following day so she and Allison are now back at Hopkins where they will likely remain for about a week.
With Amelia so vulnerable to infection right now Allison is keeping visitors away. We're hoping that by next weekend there will be an improvement in her blood count, and thus her resistance.
We'll keep you posted. Thanks for all the expressions of concern. Please keep the family in your prayers.
A short update for you. It has been a week of ups and downs for Amelia and her family. Amelia was released from the hospital late Monday night. On Tuesday the Johns Hopkins visiting nurse service came over to check on Amelia and give Allison instruction on how to deliver medicine to Amelia via the central line which is surgically implanted in her chest.
On Thursday Amelia had a scheduled oncology visit plus an MRI. After a very long day at the hospital they both arrived home exhausted. Unfortunately, Amelia did not do well the following day so she and Allison are now back at Hopkins where they will likely remain for about a week.
With Amelia so vulnerable to infection right now Allison is keeping visitors away. We're hoping that by next weekend there will be an improvement in her blood count, and thus her resistance.
We'll keep you posted. Thanks for all the expressions of concern. Please keep the family in your prayers.
Saturday, April 05, 2003
Dear family and friends,
Most of you have heard by now that 10 month old Amelia Hantske has been diagnosed with Neuroblastoma, a cancer of early childhood that arises in immature nerve cells. The lab and pathology reports are in, and Amelia has high-risk group, Stage IV metastatic disease. That's about as bad as it gets.
The good news is that there is treatment available, with a cure resulting more often than not. That's another way of saying that her chances of surviving are about 50%. But we all know that Amelia isn't the average kid, and we're confident that she is going to meet this challenge successfully.
Amelia is being treated at Johns Hopkins Hospital in Baltimore, where she has been since 20 March, by a magnificent team of surgeons, oncologists, radiologists and nurses. She has had two rounds of surgery, on her head and abdomen, and has commenced an aggressive multiagent (five in all, no more than three at one time) program of chemotherapy. The present plan is for seven, three to four day courses of chemo, occurring about three weeks apart. Amelia (and her mother) will be able to come home between courses. Along the way, when determined appropriate, there will be additional surgery, radiation treatment, and autologous stem cell transplantation. After the chemo is complete in about six months, there will be additional treatment with oral 13-cis-retinoic acid and frequent checkups for another six months. It will be a busy year for the Hantske family.
After her second day of chemo Amelia seems to tolerating the treatment OK. It's not going to be fun, with nausea and hair loss a certainty. They have medicine for the nausea, but not for the hair loss - but it will grow back.
We'll try to keep you posted. Please keep the family in your prayers.
Most of you have heard by now that 10 month old Amelia Hantske has been diagnosed with Neuroblastoma, a cancer of early childhood that arises in immature nerve cells. The lab and pathology reports are in, and Amelia has high-risk group, Stage IV metastatic disease. That's about as bad as it gets.
The good news is that there is treatment available, with a cure resulting more often than not. That's another way of saying that her chances of surviving are about 50%. But we all know that Amelia isn't the average kid, and we're confident that she is going to meet this challenge successfully.
Amelia is being treated at Johns Hopkins Hospital in Baltimore, where she has been since 20 March, by a magnificent team of surgeons, oncologists, radiologists and nurses. She has had two rounds of surgery, on her head and abdomen, and has commenced an aggressive multiagent (five in all, no more than three at one time) program of chemotherapy. The present plan is for seven, three to four day courses of chemo, occurring about three weeks apart. Amelia (and her mother) will be able to come home between courses. Along the way, when determined appropriate, there will be additional surgery, radiation treatment, and autologous stem cell transplantation. After the chemo is complete in about six months, there will be additional treatment with oral 13-cis-retinoic acid and frequent checkups for another six months. It will be a busy year for the Hantske family.
After her second day of chemo Amelia seems to tolerating the treatment OK. It's not going to be fun, with nausea and hair loss a certainty. They have medicine for the nausea, but not for the hair loss - but it will grow back.
We'll try to keep you posted. Please keep the family in your prayers.
Wednesday, March 26, 2003
All done!
After the surgery Dr. Carson told me that when he went inside to take a biopsy the mass came out rather easily. He said that he noticed an area where it had gone through the bone and so he took a biopsy of that too. He then tried to take some of the mass that was under the bone. He said that he would only take what would come out easily and it all came out. I was so happy to hear that it was out but we would have to wait to find out just what it was. At this point we thought we would be going home and that it would be determined that this boney lesion was Langerhans' cell histiocytosis.
Monday, March 24, 2003
Preparing For Surgery
After a long day at the aquarium Sherry Murry came by with a basket of treats, including a puppet, a bible and her friendship. The reality of the situation had not quite hit me yet but it felt good to have someone there to talk to the night before Amelia's first surgery.
Dr. Benjamin Carson was going to find out what the bump was made of in the morning and I wanted to be the one who gave Amelia her first hair cut. Monday morning Dr Carson came by to mark the site for surgery. Before he put his initials on the top of her head he spoke to me in a way that filled me with peace. I was oblivious to who he was at that point. I was only thinking of my daughter and I could tell at that moment that I was putting her in good hands. Gifted Hands!
Sunday, March 23, 2003
Today the Aquarium, Tomorrow Brain Surgery
We received special permission to take Amelia out of the hospital today to the Baltimore Aquarium with the whole family. It is Mom and Dad's anniversary and there is nothing else to do but wait.
The doctors continue to believe that Amelia might have Langerhans Cell Histiocytosis (LCH). We just learned that the mass on her head is both above and below her skull. We are moving forward with surgery tomorrow by Dr. Benjamin Carson.
Tuesday, March 18, 2003
The Beginning
Today I was cleaning up the kitchen after breakfast whenI remembered that I had clothes that needed to be moved to the dryer. My three year old son, Benjamin, was running around the house with long wooden blocks that he had been building with. My ten month old daughter, Amelia, was sitting in her highchair playing. When I returned to the kitchen Amelia was fussing. As I took her out of the highchair I noticed a rather large bump on the top of her head. Oh, no, Ben must have hit her head with one of those blocks. How did I miss that? How did I allow that to happen? I felt terrible. It had been a long time since I'd seen a bump like that but I knew it would be gone by morning.
Next day Amelia woke up and vomited. She wasn't acting sick, didn't have a fever and seemed to be fine most of the day. Being a smart mother I didn't really feed her table food but kept to breastfeeding her throughout the day. She vomited again later in the day and then just seemed to be back to herself. Funny though, the bump hadn't gone away. My day was too busy getting my five year old, Kathryn, to school and taking care of Ben to make any sense of that. Hmm?
Amelia went to bed as usual and slept well but in the morning she vomited again. What
Amelia had been a very happy child. She was good tempered, a good sleeper and a great eater. Lately she wasn't eating quite as much and would occasionally give me a troubled look right before a burp. Her color was a bit off; kind of yellowish.
Monday, March 17, 2003
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