For those of you who check here often, I felt that I had to do some sort of update. The last few days I have felt my head reeling and spinning with the influx of information. Here is what has happened:
I met a wonderful woman whose son has neuroblastoma. They have been battling it since 2005 and have learned pretty much everything there is to know about the disease. They have sought out new, experimental treatments and have traveled far to make sure these treatments happen. We had lunch with her and she has taught us so many things. I am very thankful to her for opening our eyes.
I feel like last week I was sitting happily inside my little bubble of "following our protocol, doing what the doctors told us, feeling safe at our hospital." Now I feel a huge feeling of responsibility in seeking and securing the best team and plan for my son. That involves different treatments, surgeries, and hospitals spread all across the country. And, new flash, I am not a doctor, so most of this stuff doesn't make sense to me anyway!
So besides all of that heavy weight on our shoulders, we have made some progress. We are still meeting with the Cook's Children Neuroblastoma team in Ft. Worth on Tuesday, and at this point don't know their opinion.
The Neuroblastoma team in Houston does not think that doing anymore chemo would improve the operability of the tumor. In other words, while chemo may still kill part of the "live" tumor, it wouldn't shrink it, and the complexity of the surgery remains the same. So we might as well safe our son the horrors of more toxic drugs and just go straight to surgery!
Arguably the best neuroblastoma oncologist (Dr. Kushner) and surgeon (Dr. LaQuaglia) are up at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City. Dr. Kushner has agreed with Houston in saying that chemo does not help our situation. He made this call based on written reports, but he will be receiving all of Case's scans on Monday and will hopefully be able to be more detailed in his opinion.
Dr. LaQuaglia will also be receiving all of Case's records this week and will hopefully be able to tell us what kind of surgery they recommend. The Houston team is recommending a "de-bulking" surgery that would take out as much tumor as possible, but would leave the pancreas intact. The last surgery they did like this took 20 hours. Wow...I don't feel too good about that.
So tomorrow morning (Monday) we will hopefully be having some intense phone conversations with the folks at MSKCC in NYC in helping us determine when and for how long to come up. Do we come up for a consultation and then come back up a second time for surgery? Do we try to do it all in one trip? This Tuesday will be 5 weeks since chemo and we don't want to wait more than another 2 weeks for surgery. So then we have the complexity of travel to expensive NYC added to the craziness of trying to secure a plan for our son. I will most definitely be calling the Ronald McDonald House in the morning!
Bottom line is: we are still thankful for our 2 beautiful sons who are currently, and unbeknownst to Case's tumor, enjoying life fully. Are we completely stressed out? Yes, but it will all work out. Thank Heaven for the wonderful gift of family, friends, and a feeling of comfort through this all.
Be thankful for your life, no matter what the craziness is.
And, oh yeah, Honey, Happy 8th Anniversary! Maybe we can take a trip to NYC to celebrate our anniversary! ;) We've packed a lot into these 8 years! Wouldn't do it with anyone else.