Radiation Week 1 Finished!

Isabella finished her first week of radiation today with very little to report. There were no noticable side effects and Isabella has been acting normal all week. We will be heading home on Saturday for the weekend, then head back up on Sunday for Round 2. I do have a bunch of pictures and other stuff to post so check back in later this weekend.

Radiation Day 1

So we are here in Boston now and Isabella just completed her first day of radiation. We were in the hospital for less than two hours, but the radiation treatment itself only took about 20 minutes. The rest of the time was spent prepping, and Isabella took about an hour in the recovery room to wake up from the anesthesia. Her treatments will continue Monday through Friday for the next six weeks.

I should also note that Isabella's most recent MRI's showed great improvement and although there is still some tumor left, there are only "wisps" of cells. There may be stray cells that the MRI don't pick up which is part of the reason for radiation. We are trying to get rid of what's left to minimize the chance of recurrence.

Summer Fun (updated with videos)

It’s been a pretty strange summer so far here in the Northeast.  After a fairly mild and rainy June, we’ve finally started getting some summer-like weather.  Once Isabella got out of the hospital after her stem cell transplant, it didn’t take her long to get out and start being a kid again.  Click the pictures below to start a slideshow of our summer fun.

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Here are a couple videos from this summer.  The first one shows the kids enjoying a nice day at the beach.

 

This video shows Annalise and Isabella “running” on the Wii.

 

Finally, here is Isabella on the monkey bars at the playground.  This shows the tremendous progress she has made with her right hand.

This video is of Isabella at one of her swim lessons at the YMCA. This is excellent therapy for her!

Radiation 101

While survival rates for other types of cancers have improved greatly, the survival rates for pediatric brain tumors have not changed all that much over many years. The traditional treatment for pediatric brain tumors is radiation because the tumors did not usually respond well to chemotherapy or the doses of chemotherapy proved too toxic for the children. Radiation works by blasting a beam of energy (usually x-rays) at the cancer cells. The radiation energy then either kills the cancer cells or jumbles the DNA to stop them from replicating.

Unfortunately, traditional radiation has a host of short term and long term side effects. Radiation cannot distinguish between good cells and bad cells, and some good brain cells can be radiated. This can cause extreme fatigue, permanent hair loss, hearing loss, stunted growth, abnormal puberty, and decreased intelligence. There is also a small chance that radiation causes more cancer.

There is a relatively new type of radiation called Proton Radiation Therapy. With this type of radiation, we can fully control and target where the beam strikes so that we minimize damage to good brain cells. Currently, there are only 6 proton therapy centers in the country, with the closest being in Boston at Mass General Hospital.

Because of these radiation side-effects, the Head Start protocol (currently in Phase 3, which Isabella is part of) was created. The Head Start protocol looks to avoid or minimize radiation in children by using 5 high dose chemotherapy cycles. The last cycle is followed by a stem cell transplant to assist the child's blood counts to recover. Because of the size of Isabella's original tumor, we knew that we would have to do radiation at some point. Although we won't be able to eliminate radiation, we'll be able to minimize it since the remaining tumor has shrunk.

In addition, we will be taking advantage of the proton therapy radiation at Boston's Mass General Hospital. This past week, we were just in Boston meeting with the radiation oncologists to plan Isabella's treatments. Her radiation treatments will start on July 27 and run for 6 weeks. The treatments are done on a daily basis from Monday through Friday.

I do have plenty of pictures and videos from this summer as we all enjoy being home for the summer. I hope to post them soon. Isabella continues to be herself, which is an energetic and brilliant child.

A Trip to the Aquarium (updated with new video)

One of our favorite places to visit is the Norwalk Maritime Aquarium here in Norwalk, CT.  We recently visited the aquarium and took a bunch of pictures and a couple of videos.

Here the girls walking down to the aquarium hand in hand.  Very cute!

One of the new attractions at the aquarium this year are the South African penguins.   

Whenever we go to the aquarium, we have to check out the turtle shells and pose behind them. 

Here we are at the Shark Tank.  One of the shark gets a little too interested in Isabella!

Just as we were about to leave, the normally shy octopus put on quite a show for us.  Enjoy!

NEW! Here is a new video with the kids visiting the penguin exhibit.