Christmas 2012
Please view details about Rowan's upcoming fundraiser below:
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Please click on Page 2 and scroll to bottom of page for latest news about Rowan's fight to beat cancer.
April 2011
When Rowan was born, Chuck and I thought she was a perfect baby. We became convinced she was perfect as she grew up into her toddler years. And we were right. Her beautiful face, her strength, her intellect, her sweet and positive nature are perfect. It was simply the tumor growing in her brain stem that was imperfect in her otherwise amazing system.
What first made us concerned that she wasn't well, was her loss of equilibrium. Over the course of only a few days, she notably lost her sense of balance until she was falling down often and unable to walk a straight line. She drifted off to the side in a seemingly drunken lurch. We called urgent care on a Sunday and took her in for an examination. The doctor examined her ears for signs of an ear infection. This was what we expected to find. Little did we know our lives were to change into a nightmare.
When an ear infection was not found, Rowan was taken to a neurologist, who prior to examining her, mentioned the possibility of "ataxia," which is associated with symptoms Rowan was displaying. After the doctor saw her, he scheduled an MRI of her brain two days later. Rowan, being only two and a half at the time, was the youngest patient scheduled for an MRI that day. We headed into a beautiful sunrise with dread in our hearts as we drove to UMass Memorial Hospital in Worcester, Massachusetts from our home an hour away. Rowan was scanned while we waited and waited, then we were brought to the recovery room where she came out of anesthesia in an agitated and inconsolable way. Again, we waited and waited for someone to come in to tell us what they had found or not found. The neurologist came in to break the news, our daughter had a diffuse intrinsic pontine glioma that was inoperable. Prognosis: unknown. Statistics: 50% of children diagnosed with this form of brain cancer do not survive beyond 10 months and less than 1% live beyond five years. Chuck broke down, grabbed Rowan from my arms, and hugged her to his chest. I went numb.
Rowan was admitted to the hospital that day. They began heavy infusions of steroids to reduce any edema in her brain. Soon, doctors began to tell us we had some difficult decisions to make. We met countless people and answered innumerable questions. In a blur of sleepless nights and days, we signed off on a plan to give Rowan radiation and chemotherapy, and to have a catheter surgically implanted in her chest. Our options were limited, this or nothing-as far as we knew. We did not leave the hospital for three weeks. Rowan had become lethargic within hours of infusion with Decadron which caused her appetite to become voracious, her face and belly to become swollen, and caused night terrors. She became a bed-ridden patient in the blink of an eye. Her potty training disappeared completely, she went back to diapers. We had never felt so despairing as we did then.
April 2011, Rowan and Daddy - UMass Memorial Hospital
Rowan's face showing the effects of steroids.
May 2011
As days went by and we all settled into the planned regimen of therapy, we made the decision that we would not lose Rowan. We would fight in every small way possible, anything to improve her chances; this treatment plan would save her. Chuck used up all of his work leave and began to receive donated hours from co-workers, anything so that he could be with his family. We found strength in our conviction and that of our family and friends, as well as in the promise that radiation would shrink the tumor and return
Rowan's motor skills to her. We began to feed Rowan only organic foods, as much raw, whole, or juiced as possible, as well as carefully chosen supplements. Rowan began to get electrical impulse treatments similar to acupressure or acupuncture from a couple of compassionate MDs also trained in acupuncture who gave Rowan these treatments free of charge, and Rowan even received some hands-on Reiki, as well as Reiki performed from individuals long-distance. Chuck encouraged her to exercise, taking her outside to walk and play as often as possible. A kind woman in the community who led the local library's story hour, visited Rowan weekly to keep her mind stimulated with activities and stories. And we continued to take Rowan on outings whenever we felt she had the energy to do so.
Wolfe's Neck State Park in Maine
August 2011
On a couple of occasions, a few weeks before Rowan lost her equilibrium, she had complained of the "house shaking" or her "head shaking." We didn't think much of it at the time, but it became one of the major markers of her tumor's presence. She fought and cried whenever placed on her back because she was experiencing a horrible sense of falling or vertigo. Her symptoms diminished dramatically under radiation, and the day that she lay completely flat on her back and proclaimed her "head wasn't shaking anymore," we were joyful. She tolerated the adult dose of radiation and the concurrent chemotherapy, Temodar, and infusions of Avastin, incredibly well. She never fell ill, her weight was steady, and she picked up where she left off in developing like a normal healthy child her age. She had a wonderful time during her rest period in June, no treatments of any kind, trips all over Massachusetts, a fun visit in our home with my best friend from California and her 8-year-old daughter. The first MRI after her diagnosis showed the tumor had shrunk a great deal. Her doctors were very pleased and we were glad as well, but reserved, knowing how often these kinds of tumors were known to grow back.
July 2011
Emma and Rowan outside the Steaming Tender restaurant in Palmer, Mass.
After her rest period, Rowan began receiving much higher doses of chemotherapy. She did well, but we could see that as each cycle went by, she became more fatigued and her appetite waned somewhat. We took her every other week to Umass Memorial to have her port accessed (the porta-cath needle inserted into her chest) and to receive her infusion of Avastin. Throughout all of this, she was a trooper. Though she might be frightened or anxious and cry, she never fought the hospital staff or us, and always cooperated, and always recovered from her upset very quickly. No one could have asked for a better patient.
August 2011
Waiting to start her infusion at the hospital while wearing Mr. Potato Head's baseball cap.
Rowan's & Grandpa's birthday party.
October 2011
In October, we started noticing that Rowan took longer and longer to recover from her chemotherapy. Some of her symptoms which had never gone away completely such as the weakness on her right side, the pulling of her mouth to the side as she spoke or smiled, and her lessened sense of balance would always become more pronounced when she was tired. Since the chemotherapy made her fatigued, these symptoms always looked worse in the days following administration of the Temodar. I thought I started noticing her eyes occasionally crossing, but I wasn't certain. Only a couple weeks after I first started seeing this, they became permanently crossed. Her third MRI on October 20 confirmed that the tumor was in progression. It was growing back, just like the doctors always said it would.
We were devastated once again. We now know that the radiation was the only agent of the tumor's response; the chemo and Avastin did little or nothing. We were afraid but felt that a backup plan involving a second treatment option had been prepared. We made an appointment to speak with a member of Rowan's oncology team. Within minutes of the start of the meeting we knew that the doctor was talking about defeat. Rowan's oncologists felt they had made their best effort. We were shocked, but came away more determined then ever that we would find a way to fight for her.
Rowan's birthday was November 1, but we had decided to celebrate it closer to her grandfather's birthday since he and Rowan's grandmother were renting an apartment nearby in order to help out. It was a bittersweet birthday party for all of us. Rowan's grandparents and aunties were present and made the party lively and fun, but Chuck and I had bouts of overwhelming sadness which forced us to leave the festivities at times. Rowan had a blast playing with her new toys and her family. It was a wonderful time for her.
My sister had brought a one-page printout of information about a clinic in Houston, Texas which specialized in treating cancer, and made claims to have even cured brain tumor patients, including those with brain stem gliomas, with a treatment called antineoplaston therapy. I checked out the Burzynski Clinic's web site and was excited by what I found. Here was hope that we might be able to keep our daughter in our lives. I told Chuck about it who also became excited and eager to learn more. He then performed a Google search on the Burzynski Clinic. When he walked back into the kitchen where I prepared some lunch, he looked crestfallen.
The results had turned up negative result after negative result on the legitimacy of Dr. Burzynski and his work. I couldn't accept that. So what if the National Cancer Institute or the Mayo Clinic didn't have anything good to say about this doctor? Did they have anything better? I would research further and determine myself if his treatment was something worth Rowan trying. I saw that though another American researcher was unable to duplicate Dr. Burzynski's experiments, that researcher had not followed his model as instructed. I found that researchers in Japan had determined that antineoplastons helped various cancer patients. I found that there were many personal accounts of people helped by Dr. Burzynski's therapy who believed in him. I found that the FDA and the pharmaceuticals companies have a history of trying to quash innovative research which could take from their profits. I wasn't going to believe the smear campaign against Dr. Burzynski. We discussed all of this, and agreed that we should think for ourselves instead of believing the frankly thin allegations we found on the Internet. We applied to have Rowan accepted into the antineoplaston clinical study for brain tumors. She was determined eligible and we made an appointment to consult with the Burzynski Clinic doctors on November 8.
On October 29, a freak snow storm took out power in most of New England including our home. Word on the radio was that the power would not be restored for a week. And so, without any further preparations or reservations made, we got on the first flight to Texas on Halloween.
In October, we started noticing that Rowan took longer and longer to recover from her chemotherapy. Some of her symptoms which had never gone away completely such as the weakness on her right side, the pulling of her mouth to the side as she spoke or smiled, and her lessened sense of balance would always become more pronounced when she was tired. Since the chemotherapy made her fatigued, these symptoms always looked worse in the days following administration of the Temodar. I thought I started noticing her eyes occasionally crossing, but I wasn't certain. Only a couple weeks after I first started seeing this, they became permanently crossed. Her third MRI on October 20 confirmed that the tumor was in progression. It was growing back, just like the doctors always said it would.
We were devastated once again. We now know that the radiation was the only agent of the tumor's response; the chemo and Avastin did little or nothing. We were afraid but felt that a backup plan involving a second treatment option had been prepared. We made an appointment to speak with a member of Rowan's oncology team. Within minutes of the start of the meeting we knew that the doctor was talking about defeat. Rowan's oncologists felt they had made their best effort. We were shocked, but came away more determined then ever that we would find a way to fight for her.
Rowan's birthday was November 1, but we had decided to celebrate it closer to her grandfather's birthday since he and Rowan's grandmother were renting an apartment nearby in order to help out. It was a bittersweet birthday party for all of us. Rowan's grandparents and aunties were present and made the party lively and fun, but Chuck and I had bouts of overwhelming sadness which forced us to leave the festivities at times. Rowan had a blast playing with her new toys and her family. It was a wonderful time for her.
My sister had brought a one-page printout of information about a clinic in Houston, Texas which specialized in treating cancer, and made claims to have even cured brain tumor patients, including those with brain stem gliomas, with a treatment called antineoplaston therapy. I checked out the Burzynski Clinic's web site and was excited by what I found. Here was hope that we might be able to keep our daughter in our lives. I told Chuck about it who also became excited and eager to learn more. He then performed a Google search on the Burzynski Clinic. When he walked back into the kitchen where I prepared some lunch, he looked crestfallen.
The results had turned up negative result after negative result on the legitimacy of Dr. Burzynski and his work. I couldn't accept that. So what if the National Cancer Institute or the Mayo Clinic didn't have anything good to say about this doctor? Did they have anything better? I would research further and determine myself if his treatment was something worth Rowan trying. I saw that though another American researcher was unable to duplicate Dr. Burzynski's experiments, that researcher had not followed his model as instructed. I found that researchers in Japan had determined that antineoplastons helped various cancer patients. I found that there were many personal accounts of people helped by Dr. Burzynski's therapy who believed in him. I found that the FDA and the pharmaceuticals companies have a history of trying to quash innovative research which could take from their profits. I wasn't going to believe the smear campaign against Dr. Burzynski. We discussed all of this, and agreed that we should think for ourselves instead of believing the frankly thin allegations we found on the Internet. We applied to have Rowan accepted into the antineoplaston clinical study for brain tumors. She was determined eligible and we made an appointment to consult with the Burzynski Clinic doctors on November 8.
On October 29, a freak snow storm took out power in most of New England including our home. Word on the radio was that the power would not be restored for a week. And so, without any further preparations or reservations made, we got on the first flight to Texas on Halloween.
Mercer Arboretum & Botanic Gardens Houston, Texas
November 2011
We hoped to get into the clinic earlier than our appointment, but that never happened. We spent our wait having fun with Rowan, taking her to parks, zoos, and the Lyndon B. Johnson Space Center. Throughout this period, we watched closely as Rowan slowly worsened in her symptoms. Her steadiness and confidence declined day by day, though she still remained happy and energetic.
Our first day at the clinic was long. We met the doctors who would be spearheading Rowan's care, and Dr Burzynski himself. His entrance was brief. His opinion was that antineoplastons were Rowan's only option at his clinic. At the day's end, we had an appointment for a new MRI and an application for FDA approval to do the treatment. We had to accept that we would still be forced to wait on treatment until the FDA gave the green light.
On November 15 we finally began Rowan on the test-level dose of antineoplastons. She tolerated it well and doctors planned to increase levels each day for 18 days. On the second or third day we began training in the use and care of Rowan's port, as we would be responsible for administering the medicine and drawing labs via the implant.
We hoped to get into the clinic earlier than our appointment, but that never happened. We spent our wait having fun with Rowan, taking her to parks, zoos, and the Lyndon B. Johnson Space Center. Throughout this period, we watched closely as Rowan slowly worsened in her symptoms. Her steadiness and confidence declined day by day, though she still remained happy and energetic.
Our first day at the clinic was long. We met the doctors who would be spearheading Rowan's care, and Dr Burzynski himself. His entrance was brief. His opinion was that antineoplastons were Rowan's only option at his clinic. At the day's end, we had an appointment for a new MRI and an application for FDA approval to do the treatment. We had to accept that we would still be forced to wait on treatment until the FDA gave the green light.
On November 15 we finally began Rowan on the test-level dose of antineoplastons. She tolerated it well and doctors planned to increase levels each day for 18 days. On the second or third day we began training in the use and care of Rowan's port, as we would be responsible for administering the medicine and drawing labs via the implant.
Rowan wearing her backpack containing her IV pump and bags of medicine.
December 2011
The medicine itself is delivered automatically via a small pump, which in turn we program and maintain. Doses are 6 times a day and 4 hours apart. Since her therapeutic level of medicine has been reached, infusions last 2.5 hours, not leaving much time for Rowan to be disconnected from her pump. The high sodium content of the medicine causes her to drink liters of water and liquids a day. What goes in must come out, so she urinates with hourly frequency. She is back to wearing diapers, but so far only really needs them when she sleeps. I have a mattress in her room where I now sleep to assist her in the night when she wakes to use her potty or requests
water.
We have paid out tens of thousands of dollars which our insurance, Aetna, would not cover. Additionally, while in Houston, we paid for a place to live, car rental, organic foods for Rowan, other necessities, and the flights from and back to Massachusetts. Seven weeks after leaving for Houston, we have a child who is connected to a pump which is connected to IV bags of antineoplastons virtually 24 hours a day, whose eyes remain crossed, whose mouth pulls to the side whenever she speaks, who is unsteady on her feet, and whose right side is radically weakened. She hobbles when she walks and the strength in her right hand is such that she will hardly use it, and when she does, she cannot grasp things with any dexterity or strength. She still remains the light of our lives. She still laughs and jokes and teases. She still plays with the dog, sings, dances a little, and demands her warmed milk and cartoons. We still have hope. We believe in her treatment, and most of all, we believe in Rowan. With everyone's prayers, and with God guiding her doctors, Rowan will recover.
water.
We have paid out tens of thousands of dollars which our insurance, Aetna, would not cover. Additionally, while in Houston, we paid for a place to live, car rental, organic foods for Rowan, other necessities, and the flights from and back to Massachusetts. Seven weeks after leaving for Houston, we have a child who is connected to a pump which is connected to IV bags of antineoplastons virtually 24 hours a day, whose eyes remain crossed, whose mouth pulls to the side whenever she speaks, who is unsteady on her feet, and whose right side is radically weakened. She hobbles when she walks and the strength in her right hand is such that she will hardly use it, and when she does, she cannot grasp things with any dexterity or strength. She still remains the light of our lives. She still laughs and jokes and teases. She still plays with the dog, sings, dances a little, and demands her warmed milk and cartoons. We still have hope. We believe in her treatment, and most of all, we believe in Rowan. With everyone's prayers, and with God guiding her doctors, Rowan will recover.
Portrait of Rowan painted by our neighbor and friend.
