Well, we’re on day 23 of our 4th cycle and everything has been fantastic! My new hypothesis is that how he responds to chemotherapy within the first 48 – 72 hours sets the stage for the remainder of the cycle. Both of the last two cycles have been amazing with few, if any, nasty side effects to contend with once we left the hospital.
Last week we had Ethan’s hearing and vision tested and both were completely fine – no change from the baseline! He’s scheduled for his MRI/MRV on Monday, September 30 (subtle reminder for Albert: that’s our 7-year wedding anniversary), so we’re very anxious and hoping to find nothing, of course.
Also next week, we are beginning his radiation treatments. To be perfectly honest, I’m beside myself about it. I understand from others that once you’ve been through chemotherapy, radiation is a walk in the park. However, all of those testimonies come from folks who have had radiation on other parts of their bodies. Radiation delivered to the brain is VERY scary since the brain of course controls who you are and all of your cognitive and physical functions. Damage to the brain that is caused by radiation is permanent and sometimes does not show up for months or years. However, we’re using a 3D conformal radiation technique that is particularly beneficial to children whose brains are still developing. So far, Ethan has blown us away in how he’s been able to tolerate treatment, so I’m hoping for more of the same.
Radiation itself entails sending high-energy X-rays into the tumor bed to kill any stray cancer cells that may have been left behind during the surgery and which have been non-responsive to chemotherapy. The unit of measure for radiation treatments is called a centigray (cGy). Ethan will receive 5,400 cGys delivered over a 6-week period, or 180 cGy per dose. Beginning next Tuesday (Oct 1), Ethan has a standing appointment at Fairfax Hospital for 7:00 am each Monday through Friday. October 1st is for a radiation simulation, with treatment officially beginning October 2nd. Following radiation, we anticipate 8 additional cycles of chemotherapy before we can be officially classified as “off treatment”.
The preparation for radiation is quite involved. Ethan had his initial radiation appointment on September 17th. The Radiation Oncologist and Radiation Therapists did a CT Scan with and without contrast so that they could design his radiation treatment plan based on the size/location of his tumor bed. They also made the full head mask that will be used to mark the entry points for the radiation beams so that they do not need to mark them directly on Ethan’s head. It is also (primarily) an immobilization device that is secured to the radiation table to make sure his head doesn’t move. I’m not particularly claustrophobic, but I don’t imagine I would care much for any of this. After all, I saw the Man in the Iron Mask in the olden days when I used to go to movies…and this all gives me the hee-bee jee-bees. Anyway, by the grace of his young age, Ethan will be put under each morning using an anesthesia called propofol. We’ve used propofol for all of Ethan’s lengthy or painful procedures and it works very well for him. When it stops running through his body, he generally wakes up within 5 or 10 minutes and is fully awake and drinking with half an hour. The radiation procedure only takes about 15 minutes, but the effects of the anesthesia will keep us there longer each morning.
In other news, Ethan is busy making inroads into his 2nd career – as an entertainer. Two days after the Ride for Kids, Mike Traynor called and invited us to be the guest family at their National Chairpersons Training Conference in November. Ethan will get to ham it up on stage some more and relish being the center of attention - and I’ll get a second chance to get through my little speech without so much emotion. The foundation also invited us down to Duke University on October 17th to take part in several films that they are producing for the foundation, but we had to gratefully decline because of Ethan’s treatment schedule. Ethan has clearly stollen their hearts! He was always so sad when Bert or I traveled on business and he didn’t get to ride on the airplane with us. He is now MOST excited to fly on an airplane to NC, but tells me he’s not sure if he can arrange for time off work for the trip. He says he’s going to ask Captain Edwards (Shift C Captain at Station 36) if he can be off-duty that week. His firefighting career is so real to him that I’m a little surprised he doesn’t insist on me dropping him off at the station each morning…
My apologies for another long email. When things go so smoothly, I just
don’t have anything to say… then I have to fit it all into one! I know I’ll
be getting grief about it later from my neighbor Doug because his blackberry
probably had to truncate the message several paragraphs ago…
Thank you again for all of your continued well-wishes!
Kim.