We leave for Alaska (via Vancouver) very early tomorrow morning. Everything is just about packed and ready to go. This morning Mad awoke not feeling well, and was sick for a couple of hours. She's better now, and had just started to perk up a bit this evening. She slept most of the day, so I'm a little worried about how tonight will go (since she's such a stellar sleeper normally - that's sarcasm if you don't know us well). Ryan is also feeling pretty lousy. What a great way to start a vacation! I'm really hoping that everyone is over their illnesses by tomorrow.
We're off, see you in a week!
And, GOOD LUCK to my friends running and walking the Rock and Roll Marathon! I'll be thinking of you.
May 23, 2009
May 19, 2009
Scan Results
I spoke with Dr. Kim a few minutes ago. The scan results look okay, it's hard because there really is nothing to compare it to since it's the first one after her surgery. This scan will be our new baseline, and we'll be able to see an increase/decrease in tumor in subsequent scans.
Also got the new VMA/HVA results
VMA: 40 (up from 28 last month)
HVA: 39 (down from 48 last month)
The VMA is worrying me, but Dr. Kim said that some foods cause the VMA levels to rise. I looked it up and next time we will be avoiding bananas, citrus fruit, avocados, and tylenol a few days before the next test. We've only been doing this for over a year, why haven't they told us this before?
Also got the new VMA/HVA results
VMA: 40 (up from 28 last month)
HVA: 39 (down from 48 last month)
The VMA is worrying me, but Dr. Kim said that some foods cause the VMA levels to rise. I looked it up and next time we will be avoiding bananas, citrus fruit, avocados, and tylenol a few days before the next test. We've only been doing this for over a year, why haven't they told us this before?
May 18, 2009
Today
Today's MRI went very smoothly. I was worried about how they were going to sedate her without her line, but it ended up being pretty easy. They used a mask to knock her out, and then put in an IV after she was already sedated. She wasn't very happy about the mask, but it didn't take very long to take effect. I was lucky to have my friend Bree come and sit with me this morning, it helped the time go by much faster than usual!
Mad was on the news the night of the Celebration of Champions. She was on the 5:30 news for about 4 seconds, and probably double that during the 11 o'clock news. They showed her walking in the relay. Ryan asked me if I thought that was her fifteen minutes of fame, but somehow I don't think so.
The next big thing we are preparing for is our Alaskan cruise! We leave very early on Sunday. We can't wait!
Mad was on the news the night of the Celebration of Champions. She was on the 5:30 news for about 4 seconds, and probably double that during the 11 o'clock news. They showed her walking in the relay. Ryan asked me if I thought that was her fifteen minutes of fame, but somehow I don't think so.
The next big thing we are preparing for is our Alaskan cruise! We leave very early on Sunday. We can't wait!
May 16, 2009
The Celebration - in pictures
The celebration was held at Embarcadero Marina Park, near Seaport Village. It's a beautiful spot, surrounded by water. I was really surprised by the sheer number of people that were involved with this day. The huge amount of kids that are currently battling cancer, those that have earned "survivorship" status (which I learned is generally two years after treatment), and those children whose parents walked in their memory.
The day started off with a memorial lap for parents and families that had a child that lost their cancer battle. Most of the families carried pictures, or had shirts, with their child's picture. At the end of the lap, the families released a white balloon symbolizing their child's release from this horrible disease. It was just as emotional as you can imagine it would be. There were many, many more balloons than are pictured here.
Elmo came too. Luckily he didn't have to run the relay with us.
We met up with friends whose son, Cade, also had Neuroblastoma.
Our sponsors were Jean and Al Breitenbach. I'm sad that I didn't get a good picture of them, because their generosity really means so much to me.
We are getting ready to take our turn in the relay.
I didn't get any pictures of the actual relay itself. Madeleine walked the whole thing holding my hand, and Ryan's hand, with our sponsors and our celebrity, local sportscaster Jim Stone and his wife. Jim Stone was the emcee for the entire event, which made it even cooler that he was our celebrity. Madeleine was pretty overwhelmed by the entire thing, and I was really taken aback by how I felt. It really felt supportive, and felt like we really were celebrating life, and celebrating our daughter's amazing journey, strength and spirit. People stood on the sidelines and clapped and cheered for her, and it was just a great moment.
After receiving her olympic-sized medal, we visited with cookie monster.
And Winnie the Pooh. She was enamoured of his giant tummy, and spent a lot of time poking at it.
It was a great day, and beautiful celebration.
The day started off with a memorial lap for parents and families that had a child that lost their cancer battle. Most of the families carried pictures, or had shirts, with their child's picture. At the end of the lap, the families released a white balloon symbolizing their child's release from this horrible disease. It was just as emotional as you can imagine it would be. There were many, many more balloons than are pictured here.
Elmo came too. Luckily he didn't have to run the relay with us.
We met up with friends whose son, Cade, also had Neuroblastoma.
Our sponsors were Jean and Al Breitenbach. I'm sad that I didn't get a good picture of them, because their generosity really means so much to me.
We are getting ready to take our turn in the relay.
I didn't get any pictures of the actual relay itself. Madeleine walked the whole thing holding my hand, and Ryan's hand, with our sponsors and our celebrity, local sportscaster Jim Stone and his wife. Jim Stone was the emcee for the entire event, which made it even cooler that he was our celebrity. Madeleine was pretty overwhelmed by the entire thing, and I was really taken aback by how I felt. It really felt supportive, and felt like we really were celebrating life, and celebrating our daughter's amazing journey, strength and spirit. People stood on the sidelines and clapped and cheered for her, and it was just a great moment.
After receiving her olympic-sized medal, we visited with cookie monster.
And Winnie the Pooh. She was enamoured of his giant tummy, and spent a lot of time poking at it.
It was a great day, and beautiful celebration.
And our celebrity was...
We had a great day!
And this was our celebrity:
Jim Stone from NBC. Look for us on TV tonight if you live in the San Diego area! He said he was very sure that we would be on TV.
The whole event was very positive and moving. I will write more about it later (along with pictures).
And this was our celebrity:
Jim Stone from NBC. Look for us on TV tonight if you live in the San Diego area! He said he was very sure that we would be on TV.
The whole event was very positive and moving. I will write more about it later (along with pictures).
Excited about Today
We are getting ready to head out the Rady Children's Celebration of Champions. This is an event for the children who are currently in treatment, and those that are out of treatment for cancer. I spent a long time trying to figure out if Madeleine is considered in or out of treatment. When I filled out the forms there was a box to check, and I really didn't know how her status would be considered. It should be an easy question, right? There was no box for "still has cancer, but not in treatment." I don't remember what I put on the form, I probably gave them some overly-lengthly explanation and let them decide. The difference in terms of the celebration, is that those who are out of treatment will run a victory lap all together, to celebrate life, and those that are in treatment are running part of an individual relay. The craziest part of this is that each participant has a sponsor and a local celebrity, both of whom will also walk/run with the child. Someone paid $1500 for Madeleine to attend this event. I can't really get over that. Someone we don't know donated a lot of money to be the sponsor of a child they haven't met. And, apparently A LOT of people donated that much money because this is supposed to be a pretty big event. All of the money, of course, goes to the oncology department of the hospital.
The coordinators called yesterday to remind us to be a little early because Mad is one of the first runners in the relay. So I guess she is still considered in treatment.
Look out for pictures later today! And tune back in to find out who our local celebrity is. We're hoping for a Charger.
The coordinators called yesterday to remind us to be a little early because Mad is one of the first runners in the relay. So I guess she is still considered in treatment.
Look out for pictures later today! And tune back in to find out who our local celebrity is. We're hoping for a Charger.
May 7, 2009
Swim!
Madeleine at swim lessons with her teacher, Ms. Marci.
Some video of swim lessons. She has been gliding for awhile, but just started learning to use her arms today:
Some video of swim lessons. She has been gliding for awhile, but just started learning to use her arms today:
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