Autumn’s Story

Site created on February 21, 2010

Welcome to Autumn's web site. Her journey began on February 1, 2010 when we took her to Fairfax Hospital ER because of headaches she had been having in the middle of the night, which started January 17, 2010. The next day a MRI showed a tumor in her Meckel's Cave/Cavernous Sinus located at the base of her skull by her brain stem. On February 8th, a biopsy was performed and the tumor was indentified as an extremely rare aggressive malignant tumor called AT/RT. They could not remove the tumor without causing damage to her. This site shares her journey with family and friends. Trust in the Lord with all you heart.  Proverbs 3:5-6




AT/RT ~ Atypical Teratoid Rhabdoid Tumor


✠ April 20, 2006 ~ December 10, 2011 ✠

Newest Update

Journal entry by Angela Hoeft

Baby girl, my sweet, sweet baby girl...this pain is everlasting, never ending and so intolerable. Not sure how to make it lessen. I am told I have to work through the grief. I pray so much but somehow feel I am doing it wrong. How do you work through something so broken? I don't know if anyone really ever does but maybe just convinces theirself they feel better just because it is the only way to keep going. I have debated on posting this letter to your site, but I feel it is necessary, it is not pretty and it will take most beyond their comfort zone, but if it makes one doctor change their mind concerning treatment for a child, a parent just ask one more question or demand more it will be worth any repercussions for going completely public that comes of it. This was written for you, from us so that justice will somehow prevail. It's your voice. I love you and miss you to the moon and back always. Mommy

 

A Letter On the Behalf of Autumn and Her Family.

We, as Autumn’s parents feel compelled to write this letter on her behalf, and any child who is or will be seeking treatment from Children’s National Medical Center. It is urgent that we let it be known of the inattentive, self-serving and sub par care administered from the Neuro-Oncology Unit as a whole. If you have a child whom is battling cancer or some other fatal disease avoid this hospital completely. You are better served elsewhere. Don’t let convenience rule your decision. I know grieving parents sometimes are angry toward their child’s doctors in general, as part of the grieving process, when their child passes away while in treatment. This does not pertain to us. We are not angry because of grief or angst, but for sound factual reasons. The only positive thing that generated from the Children’s network of doctors was that we were in fact blessed to have Dr. Horn, who operated out of Children’s Fairfax Inova in close association with CNMC in DC, treat Autumn upon primary diagnosis and go against the grain of Dr. Packer’s treatment mandates. It is no surprise she is currently retired. I wonder to this day if it were by choice, frustration or coercion.

We are angry because we were misinformed of the extent of Autumn's disease and because it was not properly explained to us. Even after we repeatedly questioned the diagnosis of recurrent ATRT, Dr. Packer and the Neuro-Oncology team did not tell us the prognosis of her disease and never gave the progression a name. It was danced around and called “a coating” when the clinical name was Leptomeningeal Disease all along. The term “coating” was not defined to us until December 1, 2010 nor were treatment options for said “coating” discussed.  Even after repeated questioning as to what was meant by “coating” upwards of four weeks prior! Dr. Packer, Dr. Kilburn and the Neuro team as medical professionals also insisted there was tumor where there was none and continued to insist there was a blockage, and that intrathecal chemotherapy would not work as it had before because of said blockage. After which we learn shockingly that intrathecal chemotherapy happens to be the recommended treatment for Leptomeningeal Disease. This so happened to be the direction we strongly wanted to take in treating her illness back around October 21 in the first place, rather than be shoehorned into palliative care and a clinical study. Also adding insult to injury, one month later around Thanksgiving, having the Neuro-Oncology team back talk themselves and dismiss there was tumor present in the brain at all or a blockage as originally idealized. (No? Really? I could have told you that by looking at the MRI’s and did.) All the while letting the disease progress beyond a manageable state. Leaving us feeling dumbfounded by their discretion and feeling raped of our primary treatment choice and options.

We would have fought harder and pushed for the intrathecal treatments or high dose therapy with stem cell rescue, which Dr. Packer and Dr. Kilburn were staunchly against, if we only we're given the full disclosure of her diagnosis from the very beginning. If the Neuro-Oncology team at Children’s made it clear they were not able to fight or even willing to help us fight, we would have left Children's hospital at the very beginning to seek out someone (such as Dr. Wolff) at Tufts Medical Center in Boston who would have fought, the very next day. We put our trust in Dr. Packer and Autumn’s caregivers at Children's to fight for her life, but whose main mission as it turned out, was to steer us toward the palliative care and clinical study route, as to collect data for research and allow them to administer palliative care until she were to die.

Tragically, she like many others I am certain, was immediately put into a category of outcome based on similar cases and not given an individual chance by Dr. Packer and Associates. There have been many stories of children with terminal illnesses where the doctors have said to take the child home. There is nothing more that can be done. These parents went against their doctor’s advice and fought. Some of these children are still alive years later. Autumn could have been one of those children if given the chance. Instead we were practically mandated a treatment route that the Neuro-Onc was going to pursue. If we realized Autumn had just weeks without treatment or maybe months with treatment to live, we would have chosen months. We definitely would have not chosen the oral chemotherapy we were goaded into, albeit upon our inquisition. It doesn’t matter how educated you are regarding what intrathecal chemotherapy can or cannot do or your 'other' experiences you have had with this disease, when diagnosing or treating an individual. It should still remain an option, especially if it were an effective treatment prior! She was an individual and everyone reacts to certain treatments differently. You lumped an individual child into a category of other ATRT sufferers and stripped her of treatment options. That type of thinking makes you just average doctors at best. Not doctors who regards each child as unique, with a life worthy of a fight. We are disappointed in all of you.

The injustices suffered by us, and our daughter run deep. Autumn died from pneumonia that was undiagnosed by the doctors at CNMC, not her disease. She lay in her hospital room at Children's and suffered from impaction in her colon, even when we told everyone her belly had hurt her for upwards of three weeks! This should have been a known condition resulting from the numerous narcotics she was on, since it is a common side effect. She suffered for three weeks as well, from pressure in her brain that was unrelieved by the copious amounts of narcotics prescribed for her 'Comfort care'. If it wasn’t for the one nurse Sarah, who fought to get her down to PICU, she would have severely suffered in that hospital room until she died under CNMC’s care. Thank God someone recognized her symptoms and ordered a CT scan, which revealed the CSF backup causing pressure in her head and the “untreatable” severe head pain. The PICU doctor ordered a shunt to relieve the pressure. The surgeon told us that the fluid shot out when she placed the shunt in her brain. Her trained Neuro-Oncologists who saw her everyday couldn’t diagnose or recognize these symptoms (or wouldn’t), and even venture to order a CT scan. They chose more sedation. How pathetic they administer this as palliative care.

Further we are devastated Children's sent her to Boston under non-emergency transport care. It took the ambulance over two hours, and with every bump on the streets of DC she cried out in pain, to reach Dulles airport to be flown by a high altitude medical transport plane rather the standard low altitude helicopter. It is pretty common knowledge that high altitudes and the air pressure associated, do not bode well for critical patients. Even upon arriving in Boston, the Washington medics advised the Boston medics to slow down take their time and cut the lights to the ambulance. Insulting.

She was a junkie by the time we reached Boston because of the amounts of narcotics she was plied with at Children’s to sedate and silence her agony, rather than solve and treat what the underlying issue(s) were. The Tuft’s Medical Staff and Dr. Wolff were shocked at the number of narcotics she was on and quickly moved to rectify the situation. Her pain was finally under control by a lone painkiller rather than several. After her detox she was finally coherent and at ease for the most part, aside from the pneumonia that was setting in. Her counts for infection of pneumonia were higher than Dr. Wolff had ever seen in anyone! But, she fought as hard as she could. The pneumonia started to clear under the 5 different types of antibiotics she was given at Tuft's. Ultimately, the pneumonia some how found it's way around the antibiotics and took her life. She didn’t even get the chance to start the sensible treatment plan that Dr. Wolff at Tuft’s had laid out to combat the cancer. The attentiveness, coordination, eagerness and willingness to produce a treatment program and fight the disease put this hospital leaps and bounds above Children’s National Medical Center.

I hope these words haunt with anyone who reads this associated with CNMC in Neuro-Oncology, but I believe they have seen so many children sick, it has numbed them and become rote, as well as the care you get. CNMC really needs to reevaluate its Neuro-Oncology treatment protocols and begin approaching each child as an individual, having value and a chance no matter how small and not just another case.

In the end, we let her go she had suffered enough...

Sincerely,

The Hoeft Family

 

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