The Calm before the Storm

As I mentioned in the last entry, this week was back to reality for Nick and the rest of us. The week started out tuesday with a hearing test, pulmonary function test and then an MRI of his brain and spine. Today was a grueling 9 hour day which consisted of numerous doctor consults and a lumbar puncture (most unpleasant). All of this is in preparation for his chemotherapy treatments which begin next week, but more about that in a bit.

We also received some good news today. First were the results of his hearing test, which were all normal. This means 2 things. First, that there was minimal damage caused by the radiation treatment, and second that Nick really can hear us when we ask him to do things and he just ignores us. For those of you who have adolescent/teen children, you may want to consider this test just to confirm that they really can hear you and just choose not to listen!

The most important results were those of the MRI and Lumbar Puncture. We are thrilled to be able to say that the MRI showed no visible signs of residual tumor and the lumbar puncture too showed no malignant cells. It appears that the radiation did it's job well. We are now hoping that the chemo will take care of any remaining tumor cells which might be lurking about. Needless to say we were all thrilled as this was a very anxious moment for all of us for up until now, we really had no idea what the outcome of the radiation treatment would be.

So now we forge on to the 3rd and final phase of treatment, Chemotherapy. This will begin early on Monday morning with them putting in a double boviac port. This is basically a multi-port tube that they insert into one of the veins in his neck. This will remain their for the entire course of his treatment (4 months) for them to administer his medications, give IV fluids and draw blood. Nick will also begin his chemo treatments on Monday. The schedule will be something like 4 days of intensive chemotherapy, followed by re-introduction of his stem cells that were harvested back in November. It will take 1-2 weeks for the stem cells to nest and proliferate such that his cell counts will return to normal. Nick will then be able to come home for a few days before he has to go back in for another round. He will have to repeat this 4 times in all, which equates to about 4 months. The drugs are pretty nasty (Vincristine, Cisplatin, Amifostine, Mesna and cylclophosphamide) Any one of these drugs are pretty potent and have some tough side effects. All of them combined will be really hard on him.

On a lighter note, this Sunday there will be a fundraising event to support childhood cancer research. The event is hoops for hope and was organized by friends and neighbors. The event will take place Sunday from 4 to 7pm at the Downingtown Middle School. Children will be "shooting for a cure" by making free throws, lay-ups, 3 pointers and half court shots. Our hope is to raise awareness of childhood cancer and to raise critical funds for on-going clinical research. Because these types of tumors are so rare (approximately 500 cases per year in the US), there is not a lot of funding available. We are thrilled to be a part of this event and grateful to everyone who has helped plan and organize this event. I hope to have some great photos to post next week when I provide my next update.