Can you believe we STILL don't know? Today has been such a frustrating day for us. I left at 6:30 am to bring in the scans from Lutheran (which I picked up Sat) for Children's. After waiting for 2 hours, I finally saw the doc, gave her the scans, and was ordered to go home, as they would call me when the scans were read by the radiologist. After arriving home, I receive a call from Children's stating that the scans were "un-readable". Lutheran General needs to re-do the scans in a different format, and then they would Fed-Ex them. Are you kidding? I don't think so. I cannot wait an additional 3-4 days for Fed Ex. Ugh. I left AGAIN, drove to Lutheran, got the scans myself, and drove back to Children's. Now, it is 8:00 pm and still I KNOW NOTHING!!! Frustration is high, patience is low. I truly cannot wait anymore. PLEASE CONTINUE TO PRAY!!!!!! I go to the worst places possible in my head. Why are they taking so long? Is something horrible on them? Do they need to call in specialists to read them? Why???? What is going on? Pray for answers for us soon...I have 2 kids who would like their normal mommy back; not the crazed, deer-in-headlights one.
I will update as soon as I hear...
Monday, June 22, 2009
Friday, June 19, 2009
Please Pray for us
We received the inconclusive results back from Aidan's scans tonight. We had to wait all day, only to find out that "something" suspicious showed up. It is teeny-tiny and we are unsure what to make of it. Since the scan was done at Lutheran General and NOT at Children's, we have to wait until Monday to get it read by "our people". Aidan's oncologist and stem cell doc both told us to not worry too much about it. Yeah, right. We are scared out of our minds and praying, praying, praying that is nothing. I will be going to Lutheran first thing in the morning to pick up the films so I can be at Children's bright and early Monday morning.
Please pray for Aidan. We are so upset by this. The not-knowing is horrid. I will update as soon as I know something on Monday.
Please pray for Aidan. We are so upset by this. The not-knowing is horrid. I will update as soon as I know something on Monday.
Tuesday, June 16, 2009
Think Good Thoughts...please.
Aidan had his nuclear injection today. Tomorrow at 1:00 is his scan. He repeats the scan on Thursday. Same time. Same place. PLEASE think good thoughts and say some prayers for our little man. We are struggling tonight. Ugh.
Saturday, June 13, 2009
Save the Date
Happy Summer? When WILL the rain stop! Not only was Aidan's last soccer game canceled today, but also a fun Children's Memorial Luau. We are bummed!
As some of you may know, Aidan was asked by Six Flags, to be the "Ambassador for Six Flags Great America" on June 27th. Six Flags is teaming up with the organization Cure Kids Cancer. If you are free on June 27th, we would love to have you sign up and walk on "Team Aidan". All you need to do is to go to http://www.walkintheparks.org. You will need to locate "Great America" and then sign up under "Team Aidan". So far, we are in the Top 10 for fundraising (8th place). Not bad, huh? We would love to see you there.
This is a big week for Aidan. On Tues-Thurs we will be heading down to Lutheran General Hospital to get a nuclear medicine scan called an "MIBG". We have not scanned for a year now, but due to a new neuroblastoma study published, our oncologist wants Aidan to start scanning regularly. This study provides convincing evidence that the best way to detect relapse is through scanning. Our oncologist is an anti-scanner, so for her to recommend this, it's a big deal. Please pray for us, as these scans check him from head to toe. We have been so blessed with clean blood and urine, we just pray that we continue with a clean scan too. On Tuesday, Aidan will get injected with a nuclear dye. No, he doesn't turn orange! It settles in his body and then Wed and Thurs they scan. The scan is the same both days. It apparently gives them a clearer view waiting 24 hours, then 48 hours after injection. It's a lot to digest. Due to insurance purposes, we have to scan at Lutheran, not at Children's. Let's hope that goes well too. Aidan loves Robert, the scanner at Children's. He can do a mean "Spongebob Square Pants" song and dance WITH accent! Ha!
Praying for our friends battling every day. There are just too many kiddos out there battling cancer. Please say extra prayers for them tonight. It is a long and scary road.
Hugs to all,
Carrie
As some of you may know, Aidan was asked by Six Flags, to be the "Ambassador for Six Flags Great America" on June 27th. Six Flags is teaming up with the organization Cure Kids Cancer. If you are free on June 27th, we would love to have you sign up and walk on "Team Aidan". All you need to do is to go to http://www.walkintheparks.org. You will need to locate "Great America" and then sign up under "Team Aidan". So far, we are in the Top 10 for fundraising (8th place). Not bad, huh? We would love to see you there.
This is a big week for Aidan. On Tues-Thurs we will be heading down to Lutheran General Hospital to get a nuclear medicine scan called an "MIBG". We have not scanned for a year now, but due to a new neuroblastoma study published, our oncologist wants Aidan to start scanning regularly. This study provides convincing evidence that the best way to detect relapse is through scanning. Our oncologist is an anti-scanner, so for her to recommend this, it's a big deal. Please pray for us, as these scans check him from head to toe. We have been so blessed with clean blood and urine, we just pray that we continue with a clean scan too. On Tuesday, Aidan will get injected with a nuclear dye. No, he doesn't turn orange! It settles in his body and then Wed and Thurs they scan. The scan is the same both days. It apparently gives them a clearer view waiting 24 hours, then 48 hours after injection. It's a lot to digest. Due to insurance purposes, we have to scan at Lutheran, not at Children's. Let's hope that goes well too. Aidan loves Robert, the scanner at Children's. He can do a mean "Spongebob Square Pants" song and dance WITH accent! Ha!
Praying for our friends battling every day. There are just too many kiddos out there battling cancer. Please say extra prayers for them tonight. It is a long and scary road.
Hugs to all,
Carrie
Thursday, June 4, 2009
Another Milestone Date
Two years ago today, Dr. Grant Geissler, removed "the beast" that was growing in our son's tummy. An eight hour surgery, he came out with arms stretched, and told us he got it all. There was a cheer by the 15 or so of us that tirelessly waited, prayed, and hoped that day. 2 years. And look how far we have come. God is good.
Wednesday, May 20, 2009
Good Day
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...
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...
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.
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