Nina and I officially moved into a completed bedroom on Wednesday. The plumbing fixtures, along with the all-important toilet, were installed on Monday. The floors were installed on Wednesday - so we wasted no time. It's still very much a construction zone around us, but everyday the upstairs gets calmer - and we've enjoyed our weekend. Yesterday we had some help from Nina's family and we got much of the front yard cleaned up. So now I've got an enormous pile of gargage in the front yard, and a supersized pile of garbage in the backyard that we will have hauled away this week. It's all good news.
As far as the adoption front goes, I'm losing a little patience with our case worker. I just expect a little followup from emails and phone calls - I don't ask for much, but responsiveness is pretty high on my list. We also have one document that we are still chasing; sadly, the on-line request that I submitted about six weeks ago has still yet to find it's way to us, so I think the only real answer is to spend a painful day in Los Angeles at the County Hall of Archives. I hope it's nothing like my last trip to the courthouse for documents, but my expectations are considerably lower since it's the "hall of archives".
Look at us - I'm complaining about normal, trivial things in the grand scheme of life.
We miss Eden so much. Spending the first couple of nights in the house seemed hollow - someone was definitely missing. We're picking out some of our favorite photos to frame. Eden is still a very big part of our lives.
Thanks for checking in!
Sunday, April 19, 2009
Monday, April 13, 2009
Plumbing Please?
I thought that I would throw in a quick update on the "move". Most of our stuff remains in the garage. The word is that today the plumber is showing up to install the water heaters, as well as the all important toilet and shower fixtures in the upstairs bathroom. If this occurs, perhaps we will sleep in the house tonight. It's amazing what happiness a toilet could bring. The rest of the upstairs is very, very close to be complete. All that really remains is installation of the floors - which "should" happen the middle of this week. Once that is complete, we will have the comfort of upstairs to ourselves while the first floor is finished - (early June for final completion).
I got a few "Happy Easters" yesterday. I don't really know how to respond to such a gesture. At one point I said bah humbug. Holidays are difficult. But Nina and I did share a wonderful memory yesterday (we share lots of great memories) that I wanted to share. During an early trip to NY in April of 2006 one of the candy shops in town donated two giant chocolate bunnies to the Ronald McDonald House (a few of you may remember these things). They were each about four feet tall (as tall as Eden at the time). Anyway, one of the volunteers at the Ronald McDonald House offerred the bunny to Eden. Hmmm - perhaps the parents should be asked about this before an offer is made to a child? Anyway, the bunny spent lots of time in our room before it was "broken down" into smaller pieces for travel (how does one get a giant bunny home) - much of it was consumed as well. That brought some smiles to our face.
I got a few "Happy Easters" yesterday. I don't really know how to respond to such a gesture. At one point I said bah humbug. Holidays are difficult. But Nina and I did share a wonderful memory yesterday (we share lots of great memories) that I wanted to share. During an early trip to NY in April of 2006 one of the candy shops in town donated two giant chocolate bunnies to the Ronald McDonald House (a few of you may remember these things). They were each about four feet tall (as tall as Eden at the time). Anyway, one of the volunteers at the Ronald McDonald House offerred the bunny to Eden. Hmmm - perhaps the parents should be asked about this before an offer is made to a child? Anyway, the bunny spent lots of time in our room before it was "broken down" into smaller pieces for travel (how does one get a giant bunny home) - much of it was consumed as well. That brought some smiles to our face.
Tuesday, April 7, 2009
Two Thumbs Down
This is my first post on the topic of "Thumbs Down" (I will also have some Thumbs Up posts).
So, two thumbs down for the COG! The COG is the "Children's Oncology Group". Many hospitals, like CHOC (Children's Hosptial of Orange County), CHOP, CHLA - and many more, belong to this group called the COG. Collectively, they run studies and prescribe the same treatment for the different cancers that they find. Overall, this is a good thing as no single hospital is going to see a bunch of rare cancers, but collectively they can collaborate and make advances. So why the thumbs down?
Neuroblastoma had been typically classified into different stages; Stage I, II, III, IV, IVs, and Stage IV high risk. Eden, like many kids, was Stage IV high risk - which is the highest risk category and receives the most toxic therapy of any cancer (kids, adults, etc.) Survival rates for Stage IV high risk were 30%. The dirty little secret was that there was an even higher staging called Stage IV Ultra High Risk. The data that the COG had was that virtually 100% of the kids that received the Stage IV High Risk protocol but were actually Stage IV Ultra High Risk would relapse - and there is no cure for relapsed neuroblastoma. Eden would have been in the bucket of Ultra High Risk. So in a nutshell, what this means, was that somebody at the COG (the study chair) knowing allowed the most toxic therapy ever to be delivered to a bunch of kids when they knew it would not work. I had a little debate with another parent (parent of a survivor), and this person's response was "what other therapy could they offer"? This is really sad - I personally think it's criminal. Somebody could have just said that we don't know how to cure these kids - then parents could immediately look outside of the COG at more research oriented hospitals like Sloan-Kettering, St. Jude, etc.
If I posted the above entry on Eden's website (which has a much larger following), I'm certain that I would receive a handful of emails from parents arguing my point is invalid. I'm also certain that all these emails would be from parents of survivors - there is a big divide between parents of survivors, angel parents, and parents in the relapse battle. Anyway, I'd be happy to debate my position anytime - what the COG did to the Stage IV Ultra High Risk kids was wrong (and I'm going to stick to my position that it's also probably criminal - reckless endangerment!)
Thanks for reading - I'll have a Thumbs Up post soon!
So, two thumbs down for the COG! The COG is the "Children's Oncology Group". Many hospitals, like CHOC (Children's Hosptial of Orange County), CHOP, CHLA - and many more, belong to this group called the COG. Collectively, they run studies and prescribe the same treatment for the different cancers that they find. Overall, this is a good thing as no single hospital is going to see a bunch of rare cancers, but collectively they can collaborate and make advances. So why the thumbs down?
Neuroblastoma had been typically classified into different stages; Stage I, II, III, IV, IVs, and Stage IV high risk. Eden, like many kids, was Stage IV high risk - which is the highest risk category and receives the most toxic therapy of any cancer (kids, adults, etc.) Survival rates for Stage IV high risk were 30%. The dirty little secret was that there was an even higher staging called Stage IV Ultra High Risk. The data that the COG had was that virtually 100% of the kids that received the Stage IV High Risk protocol but were actually Stage IV Ultra High Risk would relapse - and there is no cure for relapsed neuroblastoma. Eden would have been in the bucket of Ultra High Risk. So in a nutshell, what this means, was that somebody at the COG (the study chair) knowing allowed the most toxic therapy ever to be delivered to a bunch of kids when they knew it would not work. I had a little debate with another parent (parent of a survivor), and this person's response was "what other therapy could they offer"? This is really sad - I personally think it's criminal. Somebody could have just said that we don't know how to cure these kids - then parents could immediately look outside of the COG at more research oriented hospitals like Sloan-Kettering, St. Jude, etc.
If I posted the above entry on Eden's website (which has a much larger following), I'm certain that I would receive a handful of emails from parents arguing my point is invalid. I'm also certain that all these emails would be from parents of survivors - there is a big divide between parents of survivors, angel parents, and parents in the relapse battle. Anyway, I'd be happy to debate my position anytime - what the COG did to the Stage IV Ultra High Risk kids was wrong (and I'm going to stick to my position that it's also probably criminal - reckless endangerment!)
Thanks for reading - I'll have a Thumbs Up post soon!
Monday, March 30, 2009
Welcome Aboard
This is a place where I can now write about anything I'd like. Nina is pretty sick of listening to my political views, so you can expect to hear a bit from my perspective. Additionally, we always have something interesting going on, as well as my perception and views of pediatric clinical trials.
Many of you are now aware that Nina and I are going through the international adoption process. We will be adopting a young child from Russia. Our hope is as young as possible, which would be 8 months old (Russia requires that family and Russians have a first chance at adopting a child before international adoption can occur). We expect to have all of our documents and home study completed during the month of April. Then, we will wait for a referal for a child, and we've been told that this should come very quickly. It's great to have something to look forward to. Eden always wanted a sibling, and we had looked into adoption in the weeks prior to her diagnosis (obviously that was put on hold for a few years).
The other big news for us right now is the pending move into our new home. We spent all weekend moving out of the house we have been renting for the last 20 months. The remodel gone crazy took a long time - much of it because we effectively shut it done for several months while we were on the east coast fighting Eden's disease. It will be very nice living in a familiar, but new home. We lived in the house for 4 years prior to starting the remodel. It truely is a house of love and we are very happy with how it's turning out. The house is however not completed - we've got everything moved into one bedroom that is complete, and the rest of the house will be done in the coming weeks. Eden's room now has built in bunk beds (actually built into the wall) - why bunk beds, hmmm - we'll, maybe we'll just come back from Russia with two kids - we just don't know. We are open to siblings, but it just needs to be a good fit.
If you would like to subscribe to the blog I promise to update frequently - but you'll hear a handful about my views of the Californis State government (I'm pretty sure we will be the first bankrupted state), as well as pediatric cancer info. I think there is info on how to subscribe somewhere on the right side of this page.
Many thanks for everyone's support.
Many of you are now aware that Nina and I are going through the international adoption process. We will be adopting a young child from Russia. Our hope is as young as possible, which would be 8 months old (Russia requires that family and Russians have a first chance at adopting a child before international adoption can occur). We expect to have all of our documents and home study completed during the month of April. Then, we will wait for a referal for a child, and we've been told that this should come very quickly. It's great to have something to look forward to. Eden always wanted a sibling, and we had looked into adoption in the weeks prior to her diagnosis (obviously that was put on hold for a few years).
The other big news for us right now is the pending move into our new home. We spent all weekend moving out of the house we have been renting for the last 20 months. The remodel gone crazy took a long time - much of it because we effectively shut it done for several months while we were on the east coast fighting Eden's disease. It will be very nice living in a familiar, but new home. We lived in the house for 4 years prior to starting the remodel. It truely is a house of love and we are very happy with how it's turning out. The house is however not completed - we've got everything moved into one bedroom that is complete, and the rest of the house will be done in the coming weeks. Eden's room now has built in bunk beds (actually built into the wall) - why bunk beds, hmmm - we'll, maybe we'll just come back from Russia with two kids - we just don't know. We are open to siblings, but it just needs to be a good fit.
If you would like to subscribe to the blog I promise to update frequently - but you'll hear a handful about my views of the Californis State government (I'm pretty sure we will be the first bankrupted state), as well as pediatric cancer info. I think there is info on how to subscribe somewhere on the right side of this page.
Many thanks for everyone's support.
Subscribe to:
Posts (Atom)