We were back downtown today for Aidan's check. All things were great! Aidan's platelets finally are above 100, 000! (which only has taken like 2 years...) Normal range starts at 140, 000, but platelets are one of those bodily things that takes a long time to recover from (obviously).
When we ended treatment last year, it was decided that Aidan would no longer get scanned. One of the good (I use this term lightly) things about neuroblastoma is that it can be detected in the urine. Dr. Morgan, Aidan's oncologist, did want to scan him anymore unless something was off. She informed us today that a new study is out suggesting that the MIBG scan (a very sensitive nuclear med. scan) is actually more sensitive to relapse than the blood and urine screenings alone. So, we are back to the scans. At this point, we are not sure how often he will get scanned. This will be determined in the next few weeks. We are up for ANYTHING that will help detect relapse sooner. Good thing he won't relapse...and yes, I did inform the doctor of that today!!NO relapses for us!
We have some big insurance decisions to make right now. Please pray for us. Basically, our insurance, which has been great, wants us to leave Children's Memorial because they are out of network. They want us back at our "in-network" diagnosing hospital. How do we leave the hospital that saved our son's life? We have options, although they may just be very pricey ones...
I will post again soon. We will be at Crystal Lake Wal-Mart for a jail and bail later this month. Also, I will post the scan date, as we will DEFINITELY need lots of good thoughts and prayers on that day. Don't forget about the Great America Walk June 27th! We hope you will be there to walk on "Team Aidan"!!
Till Next Time...
Wednesday, May 20, 2009
Tuesday, May 12, 2009
That Funny Feeling
So that "feeling" is back. Aidan has his 3 month check-up next week. I am starting to look at him in a strange way...last night I actually took a flashlight in his room and examined his legs and arms for any strange bruising while he slept. Help! I am a crazed mom. What have I resorted to? :) Bruising due to unknown reasons is a red flag for the docs. It could be indicative that something is wrong. I think I need next week to be here now!
With my craziness in mind, will you send up extra prayers for us right now. With all the flu junk going around, I am a nervous wreck. Yes, his immune system is great, but STILL. I can't shake that funny feeling. Also say a prayer that our new blood draw clinic works out. We can no longer get our labs done at Children's (insurance, of course) and honestly, we have had NO luck finding a place that's close AND can work well on kids. Luckily, we have a new site available to us in Gurnee that isn't an hour away. Amen! Now, let's hope they have the patience for Aidan AND Randy. :)
Hoping all is well in your part of the world. Please keep us in your prayers. We need them.
With my craziness in mind, will you send up extra prayers for us right now. With all the flu junk going around, I am a nervous wreck. Yes, his immune system is great, but STILL. I can't shake that funny feeling. Also say a prayer that our new blood draw clinic works out. We can no longer get our labs done at Children's (insurance, of course) and honestly, we have had NO luck finding a place that's close AND can work well on kids. Luckily, we have a new site available to us in Gurnee that isn't an hour away. Amen! Now, let's hope they have the patience for Aidan AND Randy. :)
Hoping all is well in your part of the world. Please keep us in your prayers. We need them.
Sunday, April 26, 2009
Rain, Rain Go Away!
For those of us living in and near Chicago, it has been raining for what feels like days! We were suppose to attend the "Celebrate Life" festival through Children's today. It is a once-a-year celebration for children that have had transplants; whether it's stem cell, lung, liver, heart, etc. Unfortunately due to the cold, wet, and rain, we opted out. We are all teetering with colds.
We had another wonderful event last weekend. We were invited to attend a gala event for Ace Hardware in Oak Brook. Ace, is a wonderful contributor to the Children's Miracle Network. Last year they raised something like over $600, 000. Wow! It was a wine tasting, silent/live auction, and dinner. My mom-in-laws favorite handyman, Lou
Manfredini, was the host. It was a blast! Randy spoke so beautifully, and left everyone in tears. Part of his speech included excerpts from a piece entitled, "The Monster", which I included below. It was written by a fellow neuroblastoma parent. It's incredibly powerful and poignant.
In June Aidan will take his ambassadorship to new heights! (literally) Aidan has been named "Ambassador for Six Flags Great America"! Wowsers. Cool, huh? Six Flags and Cure Kids Cancer organization will be hosting an event called "A Walk in the Park". Check out the specifics at www.walkintheparks.org. We are hoping to get a "Team Aidan" together. The date in Saturday, June 27th. We will be speaking and sharing Aidan's story. After the walk, we are free to play in the park for the rest of the day! It should be a blast. We hope you can make it.
Our next Oncology appointment is May 20th. I am already a nervous wreck. Please pray for a clean bill of health. Hugs to you all and Happy Spring!
The Monster
There's a monster. It lives in our house.
It moved in a long time ago. It must have been hiding in the walls because we didn't notice him for the longest time. But it was there. It's the funniest thing because I never really believed in monsters. I thought they were the stuff of fairy tales. Imaginary beasts that people made up to explain their fears. They weren't real though. Were they?
But now I know they are real. The thing about monsters is they're not just big and scary and with sharp teeth. Bears are big and scary with sharp teeth, but they're not monsters. The difference is that the monster has a malevolent streak. It's not there because it wants to eat your garbage; it's there because it means to do you harm. Disney got it all wrong in Monsters Inc. Don't believe it. That's all imaginary. Those kinds of cute cuddly monsters don't exist. Steven King has it right.
The monster sometimes comes into our room at night and slithers underneath the bed. Its hot breath comes right through the mattress. It leaves me sweating, scared, unable to sleep. And then a chill settles in like the window was left open on a January night.
We’ve tried to kill it a dozen times. Sometimes it seems like we’re winning, but still it won’t die. And even if we kill it, I have this terrible feeling it will come back from the dead like just like in the sequel to a bad horror movie.
It's a clever beast and follows us wherever we go. There’s no escape. We can never see it because it hides in the shadows, but it’s always there and has ways of making its presence known. We can’t live a normal life.
When we got the dog, we thought maybe he would scare the monster away. The dog is smart and brave, but somehow he doesn't see the monster. The monster, though, is keeping its distance. But somehow I think it might be smarter than the dog and just waiting for its moment.
Try to explain a monster to your friends. They can hear what we’re saying, but they don’t quite believe us. We still have all of our body parts, and none of us has quite gone insane. They’ve never seen the monster even though they’ve been to the house. Still they get the sense that something isn’t quite right. Some of them keep their distance. Now we just smile and say, "Oh the monster...he’s gone back inside the wall. We’re doing fine."
Sometimes our monster doesn't seem so scary. On a sunny day, when the kids run in the park laughing and playing, we forget that it’s back there waiting for us. You have to forget for a while, or it will get inside your mind and drive you over the edge.
There are professionals who know how to deal with monsters. Ordinary folks never meet them other than on a social basis. We feel better when we're with the professionals. They seem to know what they're doing. But at night when we are home alone, there is just us... and the monster. The chill returns.
There's a monster. It lives in our house. It lives in our boy.
We had another wonderful event last weekend. We were invited to attend a gala event for Ace Hardware in Oak Brook. Ace, is a wonderful contributor to the Children's Miracle Network. Last year they raised something like over $600, 000. Wow! It was a wine tasting, silent/live auction, and dinner. My mom-in-laws favorite handyman, Lou
Manfredini, was the host. It was a blast! Randy spoke so beautifully, and left everyone in tears. Part of his speech included excerpts from a piece entitled, "The Monster", which I included below. It was written by a fellow neuroblastoma parent. It's incredibly powerful and poignant.
In June Aidan will take his ambassadorship to new heights! (literally) Aidan has been named "Ambassador for Six Flags Great America"! Wowsers. Cool, huh? Six Flags and Cure Kids Cancer organization will be hosting an event called "A Walk in the Park". Check out the specifics at www.walkintheparks.org. We are hoping to get a "Team Aidan" together. The date in Saturday, June 27th. We will be speaking and sharing Aidan's story. After the walk, we are free to play in the park for the rest of the day! It should be a blast. We hope you can make it.
Our next Oncology appointment is May 20th. I am already a nervous wreck. Please pray for a clean bill of health. Hugs to you all and Happy Spring!
The Monster
There's a monster. It lives in our house.
It moved in a long time ago. It must have been hiding in the walls because we didn't notice him for the longest time. But it was there. It's the funniest thing because I never really believed in monsters. I thought they were the stuff of fairy tales. Imaginary beasts that people made up to explain their fears. They weren't real though. Were they?
But now I know they are real. The thing about monsters is they're not just big and scary and with sharp teeth. Bears are big and scary with sharp teeth, but they're not monsters. The difference is that the monster has a malevolent streak. It's not there because it wants to eat your garbage; it's there because it means to do you harm. Disney got it all wrong in Monsters Inc. Don't believe it. That's all imaginary. Those kinds of cute cuddly monsters don't exist. Steven King has it right.
The monster sometimes comes into our room at night and slithers underneath the bed. Its hot breath comes right through the mattress. It leaves me sweating, scared, unable to sleep. And then a chill settles in like the window was left open on a January night.
We’ve tried to kill it a dozen times. Sometimes it seems like we’re winning, but still it won’t die. And even if we kill it, I have this terrible feeling it will come back from the dead like just like in the sequel to a bad horror movie.
It's a clever beast and follows us wherever we go. There’s no escape. We can never see it because it hides in the shadows, but it’s always there and has ways of making its presence known. We can’t live a normal life.
When we got the dog, we thought maybe he would scare the monster away. The dog is smart and brave, but somehow he doesn't see the monster. The monster, though, is keeping its distance. But somehow I think it might be smarter than the dog and just waiting for its moment.
Try to explain a monster to your friends. They can hear what we’re saying, but they don’t quite believe us. We still have all of our body parts, and none of us has quite gone insane. They’ve never seen the monster even though they’ve been to the house. Still they get the sense that something isn’t quite right. Some of them keep their distance. Now we just smile and say, "Oh the monster...he’s gone back inside the wall. We’re doing fine."
Sometimes our monster doesn't seem so scary. On a sunny day, when the kids run in the park laughing and playing, we forget that it’s back there waiting for us. You have to forget for a while, or it will get inside your mind and drive you over the edge.
There are professionals who know how to deal with monsters. Ordinary folks never meet them other than on a social basis. We feel better when we're with the professionals. They seem to know what they're doing. But at night when we are home alone, there is just us... and the monster. The chill returns.
There's a monster. It lives in our house. It lives in our boy.
Tuesday, March 31, 2009
Just Kidding
NBC informed us that they will be airing Aidan's story tomorrow (Wed) not today at 5:00 pm on Channel 5. Apparently they did not receive the footage in time to edit and air. So...check out the news tomorrow!!
Monday, March 30, 2009
In the News...
NBC 5 (in Chicago) will be running a feature story on Aidan tomorrow(Tues, March 31) at 5:00 pm. Check it out! Enjoy! Still working on pics, by the way!
Hugs to all-
Hugs to all-
Thursday, March 26, 2009
Back to reality
Chloe is asleep. Randy and Aidan are at school. I am trying to sort through piles of clothes, papers, and bags. Back to reality. I am not sure if any of us will be able to really explain/describe what this experience has been like for us. We have returned totally humbled by all of this. What a kid we have. The love in his heart for other kids, some who are really struggling, was an awesome sight to behold.
Our last night in D.C was a blast! We went to ESPN Zone for one last party with all of our friends. Country singer, Mark Wills, sang some incredible songs for us. One song in particular, "Don't Laugh at Me", broke all of our hearts. There wasn't a dry eye in the place, including Mark's. The song related to all of us. Whether our kids were/are bald from chemo, missing limbs, being burned, being disfigured, etc, we could all relate to the cruelty that our kids have faced. On top of everything else they have to suffer through, just one more obstacle to face. I haven't been able to get that song out of my head. It's right up there with "He's My Son", by Mark Schultz, for heartbreakers.
Miss America entertained us with our friend Elmo from Sesame Street! The kids loved the surprise of Elmo. After an awesome dinner, we were turned loose to play on gift cards supplied by Wal-mart. The kids had a blast. So, at the end of the night, Team South Carolina, New Mexico, and Illinois were left! Our 3 families closed down the place! We are total PARTY animals! The dads might have had more fun than the kids! LOL. We said goodbye, exchanging emails, tears, and hugs. We really met incredible people.
We woke up early, caught our flight home, and were greeted by Grandma Stotz with "Welcome Back" balloons for Aidan! Thanks for those, Grandma! We raced home to Chloe, who couldn't stop screaming and laughing at us! We cried and hugged her. She then started chasing Aidan and Cooper around the house. How we missed our little lady.
I do have some more pictures to post. When my computer is willing to work with me, I will post some final pictures of our "Champions Celebration".
I want to give a huge THANK YOU to the Children's Miracle Network. What an AMAZING organization they are. Their passionate dedication to children is inspiring. I thank them for allowing the little Stotz family from Illinois to represent the over 17 million children they treat each year. They are just incredible. I will post again with pics later.
Till next time and many loads of laundry later-
Our last night in D.C was a blast! We went to ESPN Zone for one last party with all of our friends. Country singer, Mark Wills, sang some incredible songs for us. One song in particular, "Don't Laugh at Me", broke all of our hearts. There wasn't a dry eye in the place, including Mark's. The song related to all of us. Whether our kids were/are bald from chemo, missing limbs, being burned, being disfigured, etc, we could all relate to the cruelty that our kids have faced. On top of everything else they have to suffer through, just one more obstacle to face. I haven't been able to get that song out of my head. It's right up there with "He's My Son", by Mark Schultz, for heartbreakers.
Miss America entertained us with our friend Elmo from Sesame Street! The kids loved the surprise of Elmo. After an awesome dinner, we were turned loose to play on gift cards supplied by Wal-mart. The kids had a blast. So, at the end of the night, Team South Carolina, New Mexico, and Illinois were left! Our 3 families closed down the place! We are total PARTY animals! The dads might have had more fun than the kids! LOL. We said goodbye, exchanging emails, tears, and hugs. We really met incredible people.
We woke up early, caught our flight home, and were greeted by Grandma Stotz with "Welcome Back" balloons for Aidan! Thanks for those, Grandma! We raced home to Chloe, who couldn't stop screaming and laughing at us! We cried and hugged her. She then started chasing Aidan and Cooper around the house. How we missed our little lady.
I do have some more pictures to post. When my computer is willing to work with me, I will post some final pictures of our "Champions Celebration".
I want to give a huge THANK YOU to the Children's Miracle Network. What an AMAZING organization they are. Their passionate dedication to children is inspiring. I thank them for allowing the little Stotz family from Illinois to represent the over 17 million children they treat each year. They are just incredible. I will post again with pics later.
Till next time and many loads of laundry later-
Tuesday, March 24, 2009
Umm. Hi Mr. President!
Guess what we did this morning? Ummm. We MET President Obama! Woo-hoo! And not only that, but Aidan played on Sasha and Malia's new playground! Am I kidding? NOPE! It was unreal. I am grinning from ear to ear right now. We arrived at the White House, only to be told that the Prime Minister of Australia was currently with the President so we would have to wait. I guess that's okay. LOL. Finally we were able to enter the White House and walk through many rooms. How cool. The history! The artwork! The furniture!
We were led outside for a group picture on the steps and then President Obama came out. He shook every child's hand (Aidan's twice, but who's counting) and took a picture with us all. He then allowed the kids to answer questions. One of the champions asked what he was planning on doing about children's health care. Yes! How I LOVE these Champion kids! He said it was his goal to ensure every child has access to quality health care. Then, he announced that the kids could play on Sasha and Malia's playground! Check out my pics. Unbelievable.
Tonight is our farewell party. We are going to the ESPN Zone. Country singer, Mark Wills, will be performing for us. It should be a blast. We are all getting so sad about leaving each other. What a blessing these families are to us. How better of people we are to know them. I will try to update later. We head out to the airport early tomorrow morning. We can't wait to see our Chloe girl.
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