Mad, Humphrey and I are leaving tomorrow for Coarsegold to visit the grandparents. I'm not looking forward to the long drive but it'll be nice once we're there.
Here's a Halloween teaser:
September 29, 2008
Chilis!
I'm a little late with this reminder, but please remember to eat at Chili's tonight! 100% of the proceeds go to cancer research.
Mad, Humphrey and I are leaving tomorrow for Coarsegold to visit the grandparents. I'm not looking forward to the long drive but it'll be nice once we're there.
Here's a Halloween teaser:
Mad, Humphrey and I are leaving tomorrow for Coarsegold to visit the grandparents. I'm not looking forward to the long drive but it'll be nice once we're there.
Here's a Halloween teaser:
New design
I'm working on customizing a new design template, things may be moving around a bit as I figure it all out. If everything looks all wonky in your browser please let me know. The most annoying part of design changes is that browsers render things differently.
And in Madeleine news, we feel the beginning of a tooth coming in! Does that explain the being awake every hour or two for the past eleven months? I wish it did.
And in Madeleine news, we feel the beginning of a tooth coming in! Does that explain the being awake every hour or two for the past eleven months? I wish it did.
September 27, 2008
September 26, 2008
Childhood Cancer Awareness Month - The Big Picture - Boston.com
Childhood Cancer Awareness Month - The Big Picture - Boston.com
Beautiful images of some cancer fighters from around the world, very moving pictures.
Beautiful images of some cancer fighters from around the world, very moving pictures.
September 25, 2008
Eat for the cause
Chili's is donating 100% of their profits on Monday to St. Jude's Children's Research Hospital. Don't forget to go out to lunch or dinner, or both!Edited to add: This is happening at every Chili's.
Annoyed with the Pink Ribbon
Breast Cancer is a very worthy cause, and I fully support the research and funding that goes towards it. However, I'm jealous, I suppose, of the amount of attention that it gets. Sure, October is Breast Cancer Awareness month, but why do retailers (I'm looking at you Target and Vons) start pulling out the Pink merchandise in mid-September?
Today at Vons I was asked if I wanted to donate money to Breast Cancer funding. Sure, I have no problem with this except THAT IT'S STILL CHILDHOOD CANCER AWARENESS MONTH. Not that Vons supported Childhood Cancer funding and research with it's checkout donation program anyway. I know there are a million worthy causes out there, but this one is obviously mine. A few weeks ago I asked my checker how I could contact Vons (corporate) to find out about getting them to add childhood cancer donations to their checkstand donation program. She didn't know, and didn't offer to get a manager. I looked around online and found the right person/department to email. The email ended up being sent back to me with a notice that that email address no longer works. Nice.
If 10% of the funds donated to Breast Cancer were instead donated to Childhood Cancer, it would make a huge difference in helping to find a cure, or in the least, finding better treatment plans for children. I don't wish to take any funding away from Breast Cancer reasearch, I just wish that Childhood Cancer funding and research got a fraction of the amount of attention that Breast Cancer Awareness does.
End of rant.
Today at Vons I was asked if I wanted to donate money to Breast Cancer funding. Sure, I have no problem with this except THAT IT'S STILL CHILDHOOD CANCER AWARENESS MONTH. Not that Vons supported Childhood Cancer funding and research with it's checkout donation program anyway. I know there are a million worthy causes out there, but this one is obviously mine. A few weeks ago I asked my checker how I could contact Vons (corporate) to find out about getting them to add childhood cancer donations to their checkstand donation program. She didn't know, and didn't offer to get a manager. I looked around online and found the right person/department to email. The email ended up being sent back to me with a notice that that email address no longer works. Nice.
If 10% of the funds donated to Breast Cancer were instead donated to Childhood Cancer, it would make a huge difference in helping to find a cure, or in the least, finding better treatment plans for children. I don't wish to take any funding away from Breast Cancer reasearch, I just wish that Childhood Cancer funding and research got a fraction of the amount of attention that Breast Cancer Awareness does.
End of rant.
Finally
I finally heard from the hospital. Yesterday they told me that the reason for the delay is because the dye for the scan is sent from Texas, and due to the hurricane, the dye was never received and a whole bunch of patients had to be canceled and rescheduled. Today they told me that she is scheduled for October 8th, for the injection, and October 9th for the actual scan. Finally!
We are celebrating Madeleine's birthday on November 1st, and are worried that the chemotherapy will interfere with her party. I guess we'll just have to play it by ear and see how she is feeling and where her counts are around that time. This weekend I am trying out cupcake recipes for her party. It will be a puppy themed celebration.
This past weekend we got to spend some time with Grandma (Nana) and Grandpa B, and Aunt Rebecca. It was very nice to be able to get out and get some things done for myself including a haircut (it had only been seven months!), a pedicure and a date night with the husband (we went to dinner AND a movie - first time since Mad was born that we've done that). And of course it was fun to hang out with the family too.
On Tuesday Mad had a neurosurgery appointment and they showed me the actual MRI images on the biggest computer screen I've ever seen, this thing seriously took up an entire wall. It was interesting to see what we're fighting. The neurosurgeon said that he can debulk the tumor (surgery) if that is what our doctor decides she wants to do. A total resection (means totally removing the remaing tumor) is impossible because of where it is in the spine. So, another surgery may be on the horizon.
I'm contemplating a visit to the other Grandparents next week. Might as well take advantage of being able to get out of the house while we still can. We're mostly housebound during chemo and it gets more than a little boring.
We are celebrating Madeleine's birthday on November 1st, and are worried that the chemotherapy will interfere with her party. I guess we'll just have to play it by ear and see how she is feeling and where her counts are around that time. This weekend I am trying out cupcake recipes for her party. It will be a puppy themed celebration.
This past weekend we got to spend some time with Grandma (Nana) and Grandpa B, and Aunt Rebecca. It was very nice to be able to get out and get some things done for myself including a haircut (it had only been seven months!), a pedicure and a date night with the husband (we went to dinner AND a movie - first time since Mad was born that we've done that). And of course it was fun to hang out with the family too.
On Tuesday Mad had a neurosurgery appointment and they showed me the actual MRI images on the biggest computer screen I've ever seen, this thing seriously took up an entire wall. It was interesting to see what we're fighting. The neurosurgeon said that he can debulk the tumor (surgery) if that is what our doctor decides she wants to do. A total resection (means totally removing the remaing tumor) is impossible because of where it is in the spine. So, another surgery may be on the horizon.
I'm contemplating a visit to the other Grandparents next week. Might as well take advantage of being able to get out of the house while we still can. We're mostly housebound during chemo and it gets more than a little boring.
September 23, 2008
Photoshoot
This weekend we were lucky to get some professional pictures taken by Sarah of Sarahjaynephotography. Sarah and I met recently because she has a son, Cade, who also had Neuroblastoma. Cade is currently celebrating a year of being cancer free!
We are delighted with the pictures, and had such a fun time at Balboa Park with Sarah.
Click on the link above, and click on "blog" to view more pictures.
We are delighted with the pictures, and had such a fun time at Balboa Park with Sarah.
Click on the link above, and click on "blog" to view more pictures.
September 19, 2008
No new news
I finally talked to the hospital a couple of days ago. They said that the nuclear medicine scan people are really backed up and that they are still working on getting her in for her MIBG. I understand that these things happen, but it's annoying and worrisome. If the tumor is indeed growing, as suspected, shouldn't we get the scan and start chemo sooner rather than later?
Ryan decided not to go to Croatia for a conference so that he could be here for Madeleine's chemo. He's still busy working all the time, trying to finish up his thesis.
Madeleine is pulling up and standing more than ever. She's started to "cruise" a little. Taking small steps while hanging onto something. She loves to go outside and play in the dirt in the planter beds. And yesterday she managed to find the grease trap that hangs off the barbecue (I didn't even know such a thing existed). When I got to her her mouth and hands were covered in grease. Yum! I'm sure that's healthy. She also says "dada" a lot, which means, Dada, baby and dog.
Hopefully I'll have more news soon.
Ryan decided not to go to Croatia for a conference so that he could be here for Madeleine's chemo. He's still busy working all the time, trying to finish up his thesis.
Madeleine is pulling up and standing more than ever. She's started to "cruise" a little. Taking small steps while hanging onto something. She loves to go outside and play in the dirt in the planter beds. And yesterday she managed to find the grease trap that hangs off the barbecue (I didn't even know such a thing existed). When I got to her her mouth and hands were covered in grease. Yum! I'm sure that's healthy. She also says "dada" a lot, which means, Dada, baby and dog.
Hopefully I'll have more news soon.
September 13, 2008
September 12, 2008
Childhood Cancer Awareness month
No news from the hospital this week. They are usually very prompt at scheduling things, so I'm not sure what is going on. We had a rare hospital-free week, it was nice.
Madeleine continues to pull herself up to standing. The first few times we clapped and got all excited, and now she expects adoring fans every time she stands up. She gets a huge smile on her face and turns around to look at us like where's my applause? No lack of self-esteem there.
September is Childhood Cancer Awareness month. Chili's is asking for donations all month for St. Jude's hospital - a leading cancer research hospital. We went tonight and I was excited that the people around us were donating. I felt like personally thanking them, but then that might come off as a little strange. If you want to help and get a meal, on September 29th (Monday), Chili's will be donating 100% of their profits to St. Jude's. So go out to dinner on the 29th!
Madeleine continues to pull herself up to standing. The first few times we clapped and got all excited, and now she expects adoring fans every time she stands up. She gets a huge smile on her face and turns around to look at us like where's my applause? No lack of self-esteem there.
September is Childhood Cancer Awareness month. Chili's is asking for donations all month for St. Jude's hospital - a leading cancer research hospital. We went tonight and I was excited that the people around us were donating. I felt like personally thanking them, but then that might come off as a little strange. If you want to help and get a meal, on September 29th (Monday), Chili's will be donating 100% of their profits to St. Jude's. So go out to dinner on the 29th!
September 8, 2008
More
Ryan spoke with Dr. Kim a little further on Friday. She is 90% sure that Mad will need more chemo. The chemotherapy will likely be a stronger, more intense drug as obviously the last rounds didn't do anything to the tumor. No news yet on the scheduling for the MIBG, but it looks like it will most likely be sometime this week. The hospital is waiting for the radioactive dye to be shipped to them. We are trying to remain positive, and I've started to do things to relieve the stress (running and yoga). Hopefully this is helping. Thanks for your continued thoughts and prayers.
September 4, 2008
Disappointed
I spoke with our oncologist earlier today. The results of the MRI are not what we had hoped for. The radiologist that read the scans thinks that the tumor that is in her spine may have grown a tiny amount since her last MRI. If anything, it's certainly not shrinking. Also, her VMA (which is what they measure in her urine) is up a little from last time too. Her current levels are at 41, and to be considered normal, or disease free, she would need to be below 5. Dr. Kim suspects that there is still some active tumor.
Our doctor is ordering an MIBG, which is where a radioactive dye is injected into her, and the active part of the tumor picks up the dye and shows up on a scan. This way we will know how much of her tumor is still active, and how much has matured.
She may need more chemo.
Our doctor is ordering an MIBG, which is where a radioactive dye is injected into her, and the active part of the tumor picks up the dye and shows up on a scan. This way we will know how much of her tumor is still active, and how much has matured.
She may need more chemo.
September
Madeleine's MRI and other tests went well on Tuesday. We won't get results until probably next week.
Last night as I taped up her line and dressing for her weekly bath I started to think about how different it would be to be able to give her a bath every night, or every other night. How I wouldn't have to prepare for anything with aqua guards and tape. How I wouldn't have to rush to get a shirt on her before she starts to pull on her line. I can't wait to get that thing out. Hopefully soon.
September 1, 2008
A post full of pictures
We spent the weekend at a friend's cabin in Idylwild. Everyone had a great time and I loved getting out of the house for a couple of days.
Mad and Noah
Freak hailstorm
Ryan and Doug
Playing cards
Crawling through the tunnel
Going for a walk (Kassidy, Danelle, Audrey)
So tired!
Kassidy
Audrey
When we got home Madeleine pulled herself up to standing three different times. This is a new skill for her as her right leg hasn't been strong enough to let her do this. So far she's needed an intermediate step (like a stepladder), or something real low (like her toy basket). But she's doing it!
Max
A few days ago I randomly came across the blog of another San Diego NB fighter, Max. I have seen Max and his mom in clinic a few times, so it was somewhat of a shock to find his page. I was always impressed with his mom in clinic, she just had such a great attitude about everything. This morning I clicked over to Max's page and found that he had died Sunday evening. Max is seven years old and had been battling this horrible disease since he was three. Today my thoughts are with Max's family.
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