Thursday, March 8th

Hannah had her first proton radiation treatment today. We really didn't know what to expect. When we first arrived in Boston, they gave us a dvd to watch that is directed at the patient, so it is in very simplistic and straight forward terms. They show the making of the mask, what the radiation room looks like...it's huge...and how the whole process works. They also mention how the proton machine is very complicated and how it needs continual adjustments AND how it may experience down time. We figured that if they felt the need to mention this on the video, this was probably a reality.

So, we show up for our first radiation treatment, and the room is packed with people. We found out immediately that the machine is down, it had been down for an hour and they had the computer people there working on it. Our hearts sank knowing that Hannah's cancer is high risk, meaning if radiation and chemo aren't started and continued within a certain period of time, the tumor would come right back, and maybe in other places too in the brain or along the spinal cord. If the machine is down for more than a day or so, she will most likely have to receive photon radiation (which is the normal radiation treatment that destroys everything in it's path, at the site and beyond also). In December, the proton machine was down for 3 days and there were a couple medulloblastoma kids that had to have 2 photon treatments. I guess they figure that type of radiation is better than none at all with this type of cancer. After waiting for 3 hours (and Hannah had not eaten all day) we were told that the machine was back up, and they were going to take Hannah first.

For each treatment, they "access" her port, which means they stick a needle through her skin into the mediport which lies just under the skin. The needle has a catheter attached through which they can draw blood, and give IV fluids. Even though the area is numb from the numbing cream they put on, Hannah still doesn't like it because it's so scary for her. After she is accessed and the IV is started they take us all into the room with this HUGE proton machine. They have 3 treatment rooms here, and they are all busy full time Mon-Fri. These room house only part of the proton process, the rest is in another room that is even bigger. It looks like a stretcher that is extended out into the middle of this large rotating circle. There is a large "arm" that extends into the circle through which the proton beam travels. For right now, one of the most difficult parts of this is the anesthesia. Some kids awaken from anesthesia without any problems, but Hannah is not one of them. She is usually quite upset, and inconsolable. This usually lasts anywhere from 1/2 hour to 1 1/2 hours. I'm hoping it will lessen as time goes on because it's very difficult for all of us.

The radiation is cumulative, so the longer you go, the more pronounced the side effects become. They told us that most kids will require a break in treatment. Most likely at some time, she will require a break of a day or two. So, the exact amount of time we will be here is undetermined right now. We know it will be at least 6 weeks, beginning today, but in actuality, longer. She is still doing her therapy, most of it before treatment in the morning, so it has been a little bit less lately. Hannah is the oldest of the anesthesia patients, the others are 1 and 2 years old! I was so surprised to hear that. With regular radiation treatment, they won't treat children under 3 years of age, due to the damage it causes to their little bodies. There are 6 anesthesia kids and 8 non-anesthesia kids, a total of 14 kids on treatment right now. Unbelievable!

Love to you all,
Kim and Dave