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.
Wednesday, September 15, 2004
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.
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