It's not the hand you are dealt, but how you play your cards.
Undifferentiated High Grade Sarcoma
Sarcomas
are a type of malignancy that come from the supporting elements and
connective tissues of the body. Sarcomas may arise from bone, blood
vessels, nerves, fat, muscles, or tendons. Since there are so many
types of connective tissue, there are an equally large number of
specific types of sarcomas. In this case it is not clear as to the
origin of the sarcoma and pathology was not able to identify the type,
thus it was an undifferentiated (‘no name’) sarcoma.
On February 19th, 2009, we had an appointment to visit with Dr. Clare Twist (Nick’s Oncologist that has been his primary physician over the past 8 years). This visit was a routine follow up to review scans taken recently and get the ‘all clear’. This day was a critical point in the cancer timeline as it marked the 5 year anniversary of being treatment free and for those that have encountered this disease, a big birthday!
There are no words to describe the feelings in the room when Dr. Twist brought us the news that a mass appeared in Nick’s latest scan. Our family has known Dr. Twist for a long time and she has always had a special interest in Nick. The message she delivered came with great concern and great sadness. The “mass” was generic and diagnosis was subject to numerous tests: MRI’s, PET Scan, and biopsy. In a relative short period of time the diagnosis was confirmed: Undifferentiated High Grade Sarcoma of the right maxillary sinus and palate.
One would think that having been through two cancers before, that one would get used to it. The heart takes a long time to accept when your children come into harms way and there is not a thing in the world that could have been done to prevent it. While in shock and in pain, the battle armor that our family was ready to throw away, was going to be needed once again. This third time we were veterans in battle, and while the armor seemed heavier, the weapons were the same: faith, family and friends.
Cost to diagnose and treat Nick's cancer from March 17, 2009 to May 17, 2009: $4,166.00 per day or $375,000!
Nick has a gift and a spirit about him that is difficult to comprehend and often not spoken about. You could not count on one hand the times that he has complained about pain, discomfort, or challenges. This is a kid who has fought the disease three times, lost an eye, lost his ability to taste food twice, lost up to 25% of his body weight, endured 42 weeks of chemotherapy, lost teeth and bone in the upper portion of his mouth, has a hole in the roof of his mouth, lost his ability to speak and lived on ice coffee and a milk shake for the last week and a half of his radiation treatment.
Nick's brother Michael, has been on this journey with Nick since the first cancer. Not enough can be said about Michael's strength to get through all of this especially as he completes his senior year and is college bound. So much is written about the pressures faced by teens growing up today and adding a younger brother with cancer to the 'mix' would seem unbearable.
Nick's Corgi 'Heidi' helping out with Scans
The blessing is that both sons have managed to get through all of this
in good spirits. The recipe like life itself is pretty simple: faith,
attitude and humor!
