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.
Friday, July 30, 2004
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.
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