(no subject)
Sep. 5th, 2009 11:05 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
mrockwellWriting
Don't forget, September is Fundraising Month over at Ralan.com. If his market listings have ever helped you on your path to publication, now would be an excellent time to return the favor and donate a buck or two. Every little bit helps.
Everything Else
The hits just keep coming. It's not just that Max will need four rounds of chemo instead of two. It's WHY.
Stolen from my hubby's blog, because I can't bear write the words myself:
"Well, the news [that Max would initially only need two rounds of chemo] was given to us by one of the nurse practitioners (NP) since [our doctor] was out of the country on vacation. Well, today, [our doctor] gave us the bad news – apparently there was a miscommunication between the NP and the researchers running the clinical study. The genetic results hadn’t actually arrived until yesterday. And the bad news… Max tested positive for one of the signs, known as 11q LOH. Bottom line, Max will need four (not two) cycles of chemo before he can undergo scans. This hit us as a bit of a shock as we were so overjoyed a few weeks ago with the thought of Max possibly undergoing only the minimal amount of treatment necessary. This was a setback but once the shock wore off, we convinced ourselves it was only a minor one. And so we went home, a little shaken but resolute. Marcy said to me, “Well, at least you have something to blog about tonight.”
But very late in the evening, Marcy started looking up 11q LOH to get a better understanding of what it actually is. What she found on the internet BROKE our hearts. Without getting too technical, 11q LOH refers to the chromosome arm 11q loss of heterozygosity, and a lot of the latest research on NB shows that it is a very important prognostic factor. One of the main factors has always been something called MYCN amplification. MYCN amplification tends to be a strong indicator of “high risk” NB, which unfortunately has a survival rate that’s typically around 35% to 50%. When we found out last month that Max did not have MYCN amplification and was therefore in the “intermediate risk” category, Marcy and I were ecstatic because we knew how much was at stake.
Well, based on what we found online a few hours ago, and we’ve corroborated it with a bunch of other articles, the latest studies show that 11q LOH is actually a better indicator of prognosis than MYCN. And the really, bad news: it’s associated with “high risk” disease. The even worse news: several studies show that 11q LOH corresponds to a 2-year event-free survival rate of 30%, even lower than MYCN amplification. If anything can be worse than finding out your baby has cancer, this is probably it.
Marcy was sobbing when she showed me what she found online, and then I just collapsed in her arms and broke down as well. We took a deep breath, gathered ourselves, and then broke down crying again. The only reason I can even write about this now is because I no longer have any tears left to shed (at least for tonight), and I spent a long time praying the rosary and meditating on our Lord’s Passion beforehand. Two years ago, on the night before I left for my deployment, I stayed up until 3 am videotaping what I called “what if” videos – goodbye messages to be played only in the very unlikely event that I were somehow killed in the line of duty. I made one message for my wife, one for my boys, one for my parents, and one for my friends at work. While that was tough, it pales in comparison to spilling my guts in this journal entry.
I am sick, absolutely sick with grief. And how can I grieve while our baby boy is alive and still fighting the good fight? How can I grieve when he still greets us with silly smiles and joyous laughter and is still every bit the blessing he was when he was born? Oh my heart aches just thinking about the “what ifs.” I don’t know how this journey is going to end, my friends, but we truly, truly thank you for sticking by us. (Hmmm... I guess I was wrong about not having any tears left.)
Please continue to pray for Max. And please pray for our family to have the grace and strength and faith to lovingly embrace whatever crosses God may send our way."
ETA: For the information-hungry among you.
Don't forget, September is Fundraising Month over at Ralan.com. If his market listings have ever helped you on your path to publication, now would be an excellent time to return the favor and donate a buck or two. Every little bit helps.
Everything Else
The hits just keep coming. It's not just that Max will need four rounds of chemo instead of two. It's WHY.
Stolen from my hubby's blog, because I can't bear write the words myself:
"Well, the news [that Max would initially only need two rounds of chemo] was given to us by one of the nurse practitioners (NP) since [our doctor] was out of the country on vacation. Well, today, [our doctor] gave us the bad news – apparently there was a miscommunication between the NP and the researchers running the clinical study. The genetic results hadn’t actually arrived until yesterday. And the bad news… Max tested positive for one of the signs, known as 11q LOH. Bottom line, Max will need four (not two) cycles of chemo before he can undergo scans. This hit us as a bit of a shock as we were so overjoyed a few weeks ago with the thought of Max possibly undergoing only the minimal amount of treatment necessary. This was a setback but once the shock wore off, we convinced ourselves it was only a minor one. And so we went home, a little shaken but resolute. Marcy said to me, “Well, at least you have something to blog about tonight.”
But very late in the evening, Marcy started looking up 11q LOH to get a better understanding of what it actually is. What she found on the internet BROKE our hearts. Without getting too technical, 11q LOH refers to the chromosome arm 11q loss of heterozygosity, and a lot of the latest research on NB shows that it is a very important prognostic factor. One of the main factors has always been something called MYCN amplification. MYCN amplification tends to be a strong indicator of “high risk” NB, which unfortunately has a survival rate that’s typically around 35% to 50%. When we found out last month that Max did not have MYCN amplification and was therefore in the “intermediate risk” category, Marcy and I were ecstatic because we knew how much was at stake.
Well, based on what we found online a few hours ago, and we’ve corroborated it with a bunch of other articles, the latest studies show that 11q LOH is actually a better indicator of prognosis than MYCN. And the really, bad news: it’s associated with “high risk” disease. The even worse news: several studies show that 11q LOH corresponds to a 2-year event-free survival rate of 30%, even lower than MYCN amplification. If anything can be worse than finding out your baby has cancer, this is probably it.
Marcy was sobbing when she showed me what she found online, and then I just collapsed in her arms and broke down as well. We took a deep breath, gathered ourselves, and then broke down crying again. The only reason I can even write about this now is because I no longer have any tears left to shed (at least for tonight), and I spent a long time praying the rosary and meditating on our Lord’s Passion beforehand. Two years ago, on the night before I left for my deployment, I stayed up until 3 am videotaping what I called “what if” videos – goodbye messages to be played only in the very unlikely event that I were somehow killed in the line of duty. I made one message for my wife, one for my boys, one for my parents, and one for my friends at work. While that was tough, it pales in comparison to spilling my guts in this journal entry.
I am sick, absolutely sick with grief. And how can I grieve while our baby boy is alive and still fighting the good fight? How can I grieve when he still greets us with silly smiles and joyous laughter and is still every bit the blessing he was when he was born? Oh my heart aches just thinking about the “what ifs.” I don’t know how this journey is going to end, my friends, but we truly, truly thank you for sticking by us. (Hmmm... I guess I was wrong about not having any tears left.)
Please continue to pray for Max. And please pray for our family to have the grace and strength and faith to lovingly embrace whatever crosses God may send our way."
ETA: For the information-hungry among you.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2009-09-05 06:50 pm (UTC)30 percent is not zero. Cling to that if you can.
no subject
Date: 2009-09-05 07:01 pm (UTC)I added a link to one of the major studies, in case you feel like torturing yourself like me. Heh.
no subject
Date: 2009-09-05 07:04 pm (UTC)no subject
Date: 2009-09-05 10:01 pm (UTC)Yes, indeed, you must keep that in mind. We will keep praying for Max.
Also, look for studies that are still going on. Many of those can give Max access to treatments and experts in the field that he might not otherwise have. (As a child, I was in a few of those.)
A thousand hugs for you and your family, and a thousand and one for Max.
no subject
Date: 2009-09-06 12:10 am (UTC)Love you, hon.
no subject
Date: 2009-09-06 03:03 am (UTC)no subject
Date: 2009-09-06 02:32 pm (UTC)no subject
Date: 2009-09-07 11:30 pm (UTC)Still praying for you guys. Hang in there! :)
Cheers
no subject
Date: 2009-09-15 07:00 pm (UTC)