Jared (2003)
Another Holiday, some dread and anticipation at visiting family. But some perspective on the value of making memories.
~ Aristotle Sabouni
Created: 2003-01-20 |
Jared, Dena and somber Holidays. Another Holiday season is upon us. And if you're at all like me, you're looking forward with both dread and anticipation at visiting family. I'm looking forward to visiting relatives a little more than some of the past; despite having further to travel than normal.
A personal friend of ours is Dena, we've known her for nearly a decade. 7 years ago Dena had her son Jared; a dark-headed little boy that was plagued with medical problems soon after birth. Jared was diagnosed with a Wilms tumor at the age of 16 months. This is genetic cancer on the kidneys that is rare; only about 500 cases per year. Fortunately, greater than 90% survive 4 years after diagnosis; and if you survive 4 years, there's a less than 2% chance of reoccurrence. Cancer on children is pretty rare, but the downside is that only a minute percentage of cancer research money is directed towards childhood variants, and FDA rules limit many treatments.
Jared had a tough case though. First, there was radiation, removal of the tumor (and a kidney), and rounds of chemo. A few months later there were new tumors on his lungs and kidney; and another round of treatments. In planning for the bone marrow transplant they were putting in a central line and they nicked his aorta, so for his 2nd birthday he got to go through emergency open-heart surgery to repair the damage; and soon after that, his bone marrow transplant and more radiation.
Sadly, all this stuff puts huge amounts of stress on a family. Some turn towards their loved ones in times of such stress, others either take out their frustrations on them or turn-away. Jared's dad and Dena's husband just couldn't handle being around and left; in the process, he managed to quit his job, lose their health insurance, sell the house out from under Dena and Jared, cash out their pension (and hide it), and just not handle things well.
The good news was that Jared was declared cancer free for 4 years, and was a thriving young boy who played soccer and lived life as fully as any 7-year-old can. And why shouldn't he? This kind of tumor almost never reoccurs. Jared was not very healthy, being small for his age; and he was having a slow renal failure of his remaining kidney for years, believed to be because of drugs and treatment. Insurance complications made it hard and slow to get all the scans they needed. On Halloween 2001, there was bad news; the kidney problem was due to new tumors, which they treated with Chemo.
Still, Dena and Jared persevered. In February Dena moved from California back to Chicago to live with her parents and build a new life. Jared had surgery to remove the tumors in 2002, with follow-up Radiation. Jared had reached his lifetime limit of radiation, but the new tumor was gone, and for the second time in his short life he was cancer free. Life was still hard on this family; her father recently had to have both an angioplasty, and polyps removed from his colon. And while trying to build a room in their basement for Jared and Dena, they discovered the house was infested with five different kinds of mold, and the EPA made them get out. Now they live in a rental property, fighting with insurance over the home repair.
In the middle of October 2002, a few days after a physical, and only a month after a complete scan, Jared woke up crying and complaining of such serious stomach pains that Dena rushed him to the Hospital. The emergency room examination showed a huge tumor on his liver, as well as another tumor, that was restricting food passage and causing his pain. The doctors were amazed at how fast the tumors had grown; not to mention the rarity of reoccurrence. Jared's tumors were already inoperable, and they could give a prognosis of only a few months.
A lot of people did what they could, their temple and community offered sympathy and support. Jared's school had a blood and bone marrow drive in his name with astoundingly high turnouts. Make-a-wish scheduled his final wish, which was a visit to Disney World and a Disney Cruise; Jared loved Peter Pan, a carefree boy that was never sick and could fly. Jared had his 7th birthday a few weeks ago and his party was scheduled for the following Sunday. Sadly, Jared went much faster than anyone expected; his birthday party was in the hospice, and he never made his Disney cruise; his little systems shut down under the pressure of the rapidly growing tumors, and he died.
There's nothing so tragic as a funeral with a little casket. It is always such an inexplicable tragedy when innocents die so much before their time, and with so much life left to live.
Jared is survived by Dena, his older sister Shelby (age 8), grandparents, family, friends, and community, who are all trying to cope with their loss. If you'd like to give something this holiday, Make-a-wish foundation (http://www.wish.org/) is an excellent charity, give blood to the red cross, get a bone marrow test. Hospices are also excellent places to give.
The point of all this is not to bum people out, nor to guilt them out of hard earned money, but to remind everyone of how much we all have. While the specifics of Jared's story are unique; the concepts of pain, tragedy, and loss are not. People say that if you've got your health then you have everything, but few of us stop to remember what that means. Hopefully, this will be a poignant reminder. While all of us have troubles and issues, few of us have had to endure anywhere near what that gentle 7-year-old boy or his mother and sister have. Turn towards your families and not away, forgive them their transgressions; and look towards the holidays with a little more appreciation for what you have, and a little more willing to suffer the tortures and frustrations that go along with the good times in visiting.
We can occasionally learn from the experiences of others, without having to go through the hardships ourselves. Hopefully, Jared and Dena's story can help remind you of what's important in life; this will help make Jared's passing another small gift to humanity, as was his all too brief life.
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