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.

Fun while it lasted

I have to say that the past couple of weeks have been great. We slipped into our normal routines of every day life, put the past behind us, and tried hard not to think of the near future. As you can tell, the past couple of weeks have been relatively calm, with some notable, positive, exceptions.

First of all, Nick is doing really well. He has lost a fair amount of weight, but he seems to be putting some of that back on. We are trying hard to bulk him up before he goes in for his chemo treatments, so it is lots of potatoes, pasta and fried foods (needless to say it is not helping me any, although Deb seems to be able to show more restraint).





Last week, the children at Shamona Creek Elementary School held a community service day where many of the children sewed pillowcases from fabric that they picked out. These pillowcases are then donated to Children's Hospital for kids who have extended stays in the hospital. The organization is call Con Kerr and was started by a mom who sewed pillowcases for her child when she was in the hospital. She then began sewing them for other children and so it began. When nick was in CHOP for his surgery, he received a couple of pillowcases himself and he still has them. I was not there during the school day, but from what I understand, there were several moms there with their sewing machines helping out throughout the day. The kids made over 200 pillowcases that will be donated this coming week. After school, Nick and some of his fellow teammates from his football team went over to the school to make some pillowcases as well. Thanks to everyone that helped this worthy cause. I have attached a couple of pictures.

A lot of people have been asking whether or not Nick is going back to school.  The short answer to that is no.  Unfortunately, Nick will need to have a series of tests (MRI, CT Scan, Spinal Tap, X-Rays, etc) over the next couple of weeks.  The beginning of March, he will then begin the final phase of his treatment, chemotherapy.  While he may not be in school everyday, we do try to keep him occupied.  He is taking a pottery class with his mom and Nick and I try to go to the gym a few days a week to play basketball and/or swim.  He also has to do a couple of hours of schoolwork each day so that he can try to keep up with his class.  I think Nick would admit that he would rather have Mrs. DiMartin as a teacher than me.  I am sure it is not easy since we don't really teach him.  We give him the work, his book and then answer questions if he has any.  It's kind of like taking a correspondence course, except he is only 10.  We did make a surprise visit last week to his class.  I am sure they were all glad to see Nick, and although he was a bit nervous, I know that he was happy to see them all as well.

 

Last week's snow day was a very welcomed surprise for all of us (especially Samantha and Peter).  We took advantage of the day off to head up to Bear Creek to do a little bit of skiing.  The timing could not have been any better.  After Nick's surgery, he was told that he needed to "keep both feet on the ground", meaning no contact sports, etc.  Well that snow day happened to fall exactly on his 3 month anniversary!  We didn't know what to expect, but lo and behold, he hit the slopes without missing a beat.  We spent about 5 hours skiing the entire mountain before calling it quits.  Since D'Town was the only school district off that day, the slopes were empty, which ensured wide open slopes, no lift lines and numerous runs.

Today we spent a couple of hours with Nick's football team playing basketball at the YMCA.  It was great to see all of the boys again.  It was even better seeing them all playing together as if nothing had ever happened.  We were curious to see how Nick would do as well as how he would be treated by his team.  We were happy to see that, while everyone was glad to see him, he was treated just like any of the other kids and they all had a great time.  Thanks to the Lionville YMCA for allowing us to have the use of their gym this Sunday afternoon.

So, our 2 week hiatus is coming to a close.  This Thursday we are back at CHOP for a check-up and to schedule the aforementioned tests before the beginning of March.  It was nice to have this time together as a family to just relax and enjoy each other.  I will keep everyone up to date over the next couple of weeks as we get more information.