We would just like to update everyone! First off we would like to THANK each and everyone of you for kind and gracious donations. The boys LOVE their "school bus" as they call it :). Carter just turned 2 and Cullen just turned 3 and both are growing like weeds! Landon has been doing alright until about 4 weeks ago when he started have a lot of leg pain which we though at first was a pulled muscle from bowling (Landon and Cullen started a bowling league on Saturdays for the summer :)) Then we had thought it was a joint out of place. Doctors sent us to orthopedics, and then orthopedics sent us to rheumatology. They found nothing. So, Landon's doctor in Chicago who specializes in his disorder CCHS, said she would like a CAT scan. Landon's disease makes him prone to Neuroblastoma, which is a type of cancer. A couple hours after the scan the doctor called with bad news. It appeared that Landon had a large tumor behind his heart and between his lungs. We then were scheduled to go see the oncologist the next day. When we got into her office our worse fears were confirmed. Our Landon was diagnosed with stage 4 neuroblastoma. On top of having the large tumor behind his heart, the cancer has spread to his spine, breast bone and pelvis bones, and also appears to be in his bone marrow. We will be doing chemo for 5 months (which we will be in and out of the hospital). Then he'll do radiation daily. Landon will be receiving a blood transfusion tomorrow, and then he will be getting a full body scan on thursday, and then will be admitted on thursday. Friday he will get a port put in his chest and a biopsy done. Chemo will start Friday night. He will be in the hospital for 5 days for chemo then he is supposed to be able to come home for two weeks. This is a very fast spreading cancer as it was not there in April. We thank you all again for your kind hearted ness towards our family.
Updated story from Dallas Morning news on Van:
Brandy and Mark Costello needed a custom van that could handle the medical equipment that keeps two of their three sons alive. A drive by the Carrollton Police Officers Association resulted in enough donations to buy the van and give the family a $41,000 check as well.
Published: 05 April 2013 11:02 PM
2-28-13: Against the odds, Plano family with ailing kids is happy
CARROLLTON "” Patrolman Mark Costello is a reluctant public speaker, even before an encouraging crowd of friends and fellow police officers.
"I don't know what to say. I really don't," he said, clearly wishing to take a headlong slider out of the spotlight.
His wife, Brandy, came to the rescue, whispering sotto voce to their 7-year-old son, Landon, "Do you want to say "˜thank you' "?
Landon popped up "” mindful not to move farther than a 5-foot tether of breathing tube that links him to a portable ventilator. He happily crowed out his thanks, to laughter and applause.
Thursday was a big day for the Costellos, whose lives most of us would find unimaginably demanding.
They were the honorees at a gathering of Mark's police colleagues, an event to which they traveled in their big new commercial van. It has been specially outfitted to meet two of their three sons' extraordinary medical needs.
Far beyond the bounds of calculable odds, Mark and Brandy have two children with devastating, incurable and entirely unrelated disabilities.
Middle son Cullen, 2, is lively, energetic and glowing with good health.
Landon was born with congenital central hypoventilation syndrome, a rare disorder in which the brain does not signal the body to breathe. He has been dependent on a ventilator since birth.
Cullen was born after the couple underwent testing to ensure that Landon's condition was not an inherited condition that might affect other children they might have.
Then came Carter, now 20 months old. He was initially healthy, but at two months, he began losing motion and muscle control. Doctors diagnosed a severe form of spinal muscular atrophy, which has gradually stolen the little boy's ability to move, swallow or verbalize.
Life expectancy for both Carter and Landon is almost impossible to predict.
When Carter's condition required that he begin using a technically sophisticated, stabilizing wheelchair that weighs more than 400 pounds, the Costellos became virtually housebound, apart from Mark's overnight patrol shift.
It was nearly impossible to fit the family, which includes Mark's mom, Evelyn, and a full-time nurse, plus the medical equipment needed to keep the two boys alive, into any passenger vehicle on the market.
They pinned their hopes on a long-shot fundraising effort to purchase a specially modified commercial van, outfitted with an industrial lift and backup electrical power.
When I first met and wrote about the family just over a month ago, their supporters had raised a remarkable $32,000 toward the $87,000 cost of the van.
In less than five weeks, they added more than $75,000 to that sum, which was being raised through a charitable website. It was more than enough to purchase and outfit the van, which was delivered this week.
And on Thursday, the Carrollton Police Officers Association gave them a check for an additional $41,000, raised from several area police associations, citizen patrol groups and individuals.
"And it's still coming in," Carrollton POA president Brian Box cheerily reported.
"Oh my gosh. My gosh," Brandy gasped softly as Box presented the check. As she spoke, she gently cradled Carter, whose expressive eyes are the only portal to the little boy's sweet, loving personality.
You forget sometimes that human beings are capable of profound, selfless grace. I forget it all the time, caught up in my own busy, selfish affairs, and working in a business that so often deals with tragedy and malfeasance.
It's an easy overstatement to talk about people "devoting their lives" to something apart from themselves. The reality is that Mark, Brandy and Evelyn devote every day to giving these three boys a happy, loving, normal childhood.
For Carter and Landon, providing an experience that approximates a "normal" childhood is an all-day, everyday sacrifice of the leisure and pleasure most of us take for granted. They don't complain.
But it's also shockingly expensive. The gifts this family has received, from both friends and strangers, have given them a little more freedom, a little breathing space.
"To be able to go places with our kids "¦" Mark said haltingly, gesturing toward the big, glossy-black van. "That was nearly impossible.
"Now we can."
Updated info: I along with Mark & Brandy want to say THANK YOU for all the generous donations that are making this possible for these babies! When I started this fundraiser, Mark & Brandy were unaware this was initiated. They learned of it days later. They wrote a compelling 20 page letter to insurance that covered every question possible and supplemented theirs with letters from doctors, submitted all to both insurances only to denied and practically not given the time of day. I started this fundraiser at $60k thinking this was all they needed with insurances help making the modifications to the van. Now, that all the final quotes are in, and insurance is refusing any help at all, they need $87k to literally walk away with the van, modified and ready to go. I hated to change the goal, but after much deliberation I think we can do this for them! All the way! Please know how grateful we are for all of the support they have been given, but please keep sharing and spreading the word! Please keep in mind that all donations to this site , the final amount of what we are given is 91.8% of what's actually been raised after fees. Please keep up the support, let's make this happen for them!!!