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by Kristen Hoffman
Hudson’s Mark Lutter has faced every parent’snightmare: two years ago, his two-year-olddaughter, Alexa was diagnosed with brain cancer.Over the course of two years, she has faceddebilitating illness and possible complicationsthat may not make themselves known for years tocome.Lutter presented his family’s story at the May 8,NH 9.12 project meeting in Windham. He urgedthose in attendance to take charge of their ownhealthcare, as in hindsight, he believes Alexa wasput through a lot of unnecessary tests and traumadue to hospital policy and lack of communicationwithin the medical eld.Alexa was a normal, healthy baby girl. Shehad some physical warning signs that she was notwell, but they were so minuscule, Lutter and hiswife did not notice, “See how she’s always tiltingher head,” Lutter said while presenting severalpictures of Alexa.By January 2011, she started acting differently,their seemingly healthy little girl began vomitingfrequently, and she fell a lot. “At two and ahalf years old, she wouldn’t run or jump, mydaughter was very cautious,” he added thatdespite these odd occurrences, his daughterseemed to be developing normally. During aroutine doctors appointment, her pediatriciangrew concerned and ordered an immediate MRIat Boston Children’s Hospital. This was whenAlexa started her six-month hospital stay. Herpediatrician noticed the tilt, and found that whileher weight and size were within the connes of regular growth, her head size was in the ninetiethpercentile, several months later, her head hadgrown to the 98th percentile.A two hour long MRI initially revealed that littleAlexa had a golf ball sized tumor in her brain.They soon found out that it was even larger. Fluidlled ventricles were putting pressure on herbrain. Lutter explained that the tumor also hadtentacle like bers that extended into her spinalcolumn. “A tumor that size would have killedany of us, it would not have been able to grow solarge, “ Lutter said. But because Alexa was stilldeveloping, her skull expanded to accommodatethe tumor.One week later, she had surgery to remove thetumor. “Boston Children’s had an MRI machineright in the operating room, so they were ableto track the progress, and found that the tumorwas much larger than they anticipated,” Luttersaid. Eventually after an 11-hour procedure,Alexa’s surgical team removed an eight and a half centimeter tumor from her brain. Her surgeonsaid it was the largest she had ever seen. Duringthe surgery, a vocal chord nerve was severed.The damaged nerve may have long-term effectson Alexa. According to Lutter, a year has passedsince the surgery, and she still can’t speak dueto the severed nerve and a permanent tracheatube. The vocal chord nerve doesn’t just regulateher voice, but also breathing and swallowing.When they tried to remove her breathing tubeafter surgery, they injured her trachea. Her familycould only sit by and watch. The Lutter’s ordealwith the healthcare system was far from over.“They told us she’d be home three to ve daysafter the surgery. It ended up being six months,”Lutter said. After an extended stay at BostonChildren’s Hospital, she was transferred to MassGeneral to receive radiation therapy. Her doctorstold her family that the cancer has a 100 percentreturn rate without radiation. With radiation, thepossibility of it returning falls to 25 percent.But her issues did not subside following thesurgery. Soon afterwards, her right side becamevery weak, and doctors soon found that her brainwas swelling again. “It was all trial and error,”Lutter said, every time a method would fail, herteam would have to design another course of action. Eventually, Alexa had a permanent shuntplaced in her brain, and a feeding tube installed.Lutter brought some of the medical devices thatare inside of his daughter and presented them tothe group. He showed the group a trachea tubethat he and his wife prefer to use with Alexa.Over the course of Alexa’s six-month hospital stay,he said he and his wife started to become amateurdoctors.As time went on, Lutter started to see theeveryday wastes that occur in hospitals and driveup healthcare costs. For example, when Alexaneeded radiation therapy, a whole medical teampiled in an ambulance to transport her fromMass General’s main hospital, to their radiationcenter across the street. Lutter found that it wasapproximately 111 feet from the front door of Mass General to the front door of the radiationcenter, “It drives up costs for everything,” Luttersaid. Medical supplies like metal scissors arethrown away after each use, because it is cheaperto keep purchasing new scissors than to sterilizeand repackage them.The same thing happened with tests. Luttersaid that Doctors would order multiple x-rays perday, despite the fact that and x-ray image of herlungs would in no way alter her treatment. Heand his wife started asking the doctors if a testwould reveal information that was “nice to know,”or “need to know.” More often than not, hefound that many tests fell in the “nice to know,”category. From that point on, they started to bemore conservative regarding the tests.“There are good things and bad things abouteveryhospital,”Lutter said.Nice to knowor need toknow, ata certainpoint, Alexawas gettingmultiplex-rayseveryday.Lutter and hiswife beganto ask hownecessary thetests were.Often times,they were notnecessary, asthe route of treatment would not differ based on theresults.They also became numb to manythings that would horrify others, forinstance, they knew how to monitorher daughter’s oxygen machine. If shestarted turning purple, they would justadjust her oxygen intake.When she nished her course of radiation at Mass General, she wastransferred over toFranciscan Rehabin Brighton. Bythis time, she waslearning how tosmile again. Shehad to go throughrigorous rehabexercises, as she hadnot walked in nearlysix months. Thenurses at Franciscanalso coached herparents how to takecare of her daughteronce she wasreleased.Alexa returnedhome to Hudsonin August of 2011.She still undergoesextensive physicaltherapy both at hospitals andin school, “She’s doing fairlywell now,” Lutter, said. Sheis still very weak and walkswith the help of a walker, priorto the surgery, her right sidewas dominate, she is now lefthanded. She doesn’t need tobe on oxygen all the time, andshe’s beginning to readjust tolife. Unfortunately, she is stillunable to talk, or cry, makingcommunication incrediblydifcult. But the Lutter familycontinues on, one step ata time, while Alexa makesprogress every day.Towards the end of thepresentation Lutter urged allin the audience to talk chargeof their own healthcare. Heacknowledged that his casewas somewhat unusual, but heurged everyone to be preparedfor what may be ahead. Lutteralso acknowledged that workhad to be done with thecurrent healthcare system,as he witnessed an extremeamount of nancial waste inthe healthcare industry. Whilehe’s grateful for the care his daughter received, hesaid in hindsight, he would have researched theprocedure and treatment plans more in depth, ashe believes that could have saved his daughterfrom a lot of discomfort. Alexa’s cancer has notreturned since her tumor was removed in early2011, but, the complications may last a lifetime.
submitted by the House Republican Ofﬁce
House Speaker William O’Brien (R-MontVernon) and House Majority Leader D.J.Bettencourt (R-Salem) offered the followingstatements on the passage of Senate Bill 155,which increases expense deductions under thebusiness prots tax (BPT). The bill passed 231 to79.House Speaker William O’Brien“We need to work with our employers togive them condence to invest, grow and hire.Lowering their cost of doing business and makingNew Hampshire more competitive will entail acomplete transformation in a state governmentthat also rolls back excessive regulations; refusesto increase taxes; and ensures an environmentof growth, responsiveness, stability, and support.We understand our state’s future depends on agovernment committed to advancing economicgrowth and we will continue to advancethese goals to preserve and enhance our NewHampshire Advantage.”House Majority Leader D.J. Bettencourt“This bill would increase the ability of oursmall business community to invest in capitalequipment. In a recovering economy, we need togive the green light to our entrepreneurs and smallbusiness owners to go out and buy machinery,equipment, vehicles, furniture and otherqualifying property knowing that they’ll be able todeduct up to $25,000 from their Business ProtsTax. This will contribute to the overall health of our economy and continue our efforts to makeNew Hampshire more business friendly.”
House Continues Focus on Jobs and Economy, Passes Business Tax Cut
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The Costs of Cancer
Mark Lutter o Hudson shows the audience a trachea tube similar to the one his daughter uses. His daughter was diagnosed with brain cancer two years ago, and is recovering as well as can be expected.
by Kristen Hoffman