I have been avoiding posting an update, because frankly, we didn’t have much to say until now since the pathology report wasn’t in yet. As many of you know already from my Facebook status, we called today and were told that the pathology report was in and that it was officially Neuroblastoma. It helped that we were only giving ourselves a very small amount of hope that it was actually something else, but it was still a bummer to hear that it was definitely NB. Looks like we’ll get to use that Ommaya port in Eli’s head after all!
Yesterday we actually had a meeting with Dr. Kramer to talk about the 8H9 mouse antibody protocol “in case it really is Neuroblastoma”. It was a positive conversation, because like I’ve mentioned before, 8H9 has a really good track record over the last 6 years. The original study had 17 kids and 14 of them are still alive and disease free in the head/spine. 1 of them is still fighting hard, but did relapse after 8H9 and 2 of them passed away from other complications. So they are very excited about the success of 8H9 and from what we hear, it is a very easy treatment compared to 3F8. The 8H9 attaches even better to Neuroblastoma markers than the 3F8 does, so this is probably why it is even more effective. They do the injection in the Ommaya port in Eli’s head and there is very little to no pain associated with it. The unfortunate part is that it requires 20 days of radiation over 4 weeks to the entire head and spine before we do anything else. This of course has some potentially negative side effects. I won’t list them all here because frankly we haven’t gone over them with the radiologist. We do know that it’s a fairly low dose of radiation. Many other brain tumor would require more, but they have gotten away with a smaller amount for Neuroblastoma as it has been shown effective at this dosage. Dr. Kramer also told us that the last MRI they did also showed a VERY small lesion in the back of the brain that Dr. Souweidane could have never found to remove, so that will also be treated by the radiation and 8H9.
This protocol also requires 3 total rounds of chemo. Irinotecan for 5 days with the radiation, and then 5 days of Irinotecan with oral Temodar. After the radiation and the first two rounds of chemo (and a few breaks of 1-3 weeks in between each step for count recovery), we will start the 8H9. Basically, it is an injection, followed by spinal fluid draws from the Ommaya port. We do this for two weeks, do a brain MRI, and then do it again for two more weeks. After the 8H9 is over, we go back to 3F8 for 5 cycles (I assume if Eli is still HAMA positive we will try to do something about lowering that level) and then we would do more oral Temodar. Finally we’d be back on Accutane for another 6 cycles (just when we got excited about being DONE with Accutane). I’m not totally sure on the expected side effects of the chemo besides nausea. It’s a pretty low dose I think, so I’m not 100% sure on the hair loss possibility. Speaking of hair, it seems that Eli has inspired a LOT of mohawks in the families of our CarePage readers. We LOVE to hear these stories and hope that it provides people with the opportunity to tell others about Eli and help bring more awareness to childhood cancer and ultimately more prayers for these little fighters.
ALSO speaking of hair loss, our New York Grandma was on a local radio station in NYC last Saturday talking about the St. Baldrick’s event coming up where people shave their heads to raise money for Childhood Cancer Research. She gave out Prayer Warrior bracelets to the disc jockey and they spoke about Eli, which was pretty cool! You can listen to the 8 minute interview here:
http://podcast.wor710.com/wor/1615010.mp3
So, other than waiting for our pathology report to come in, we have been filling our time with activities such as the Children’s Museum of Manhattan, the Carousel in Central Park, the Mansion diner and Best Buy with our good friends the Atkins (http://www.prayfortrey.com), and on Monday we went to the BODIES Exhibition in Southern Manhattan. The BODIES Exhibition was very cool (although pretty pricey at $26 for adults and $20 for kids). Basically, they took 20 human cadavers that had agreed to give their bodies to science along with hundreds of other organs and put them through a special silicone and acetone process to preserve everything. They then put them on display to show off what is in our insides like muscles and organs and such. A few of the organs actually had cancer, so Eli was intrigued by that. They even had a kidney on display with the adrenal gland right on top (the adrenal gland is where Neuroblastoma originates). They also had a body that was cut up into dozens of slices and displayed to show what the body looks like if you are viewing it from an MRI. That was pretty cool as well. Eli also got to hold a leg bone and a human brain. It probably isn’t a good exhibit for every 5 year old, but for one that has been surrounded with medical talk for the last 21 months, he thought it was pretty neat and we found it to be very informative. http://www.bodiestheexhibition.com/bodies.html
Last night I got to go with 3 other dads to a NY Knicks game at the Garden and witnessed them beat the Atlanta Hawks 109 to 105! Eli has been feeling great and hasn’t even needed any Tylenol for pain. The hard part is keeping him and his little buddies slowed down a bit to reduce the risk of him falling and hitting his head!
The next step for Eli is going to be a radiation sim where they fit him for a mask and align everything up so that it is exactly right for his 4 weeks of radiation. We have no doubt that Eli can do the radiation without anesthesia, which will make life MUCH easier, but I don’t think we want to subject him to the 1.5-2 hour simulation and mask fitting without sedation. It will make the radiation a traumatic experience and we would rather he be able to do the quick radiation without having bad memories of a really long sim. However, this might postpone the sim if we have to wait on anesthesia, so there’s a good possibility Eli will have to brave it without the sedation. We won’t know until we get a chance to talk more with the radiologist. We really appreciate the prayers from everyone. It helps so much to know how many prayer warriors are out there talking to God about Eli. We know this news was no surprise to God and that He has complete control over these next steps. We are so thankful to have caught this very early and to have been here in NYC where we need to be to get great treatment for it! God isn’t done using Eli’s story to touch people, I’m sure of that. Thanks for being so supportive of us through the ups and the downs!
Psalm 31:24 Be of good courage, and He shall strengthen your heart, all you who hope in the Lord.
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