This Thursday at 10/9c
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The update on Tom McGowan's condition comes straight from his father on July 24th. Frank writes:
"Tom has been watching Hopkins every week and is thrilled that he was chosen to be on TV. The program is outstanding, and may be responsible in part for him still being with us.
Late yesterday morning, Tom had a grand mal seizure. After the convulsions, he turned grey, became black around the lips and went rigid. Apparently, fluid blocked his airway and he stopped breathing all together. Sam, Tom's older brother, performed chest compression and mouth-to-mouth CPR, and managed to revive him just before the ambulance arrived. The ambulance response time was very fast, about seven minutes. We were told by the EMT's and the physicians who later saw Tom that without the CPR he would have been brain dead, for his heart had stopped and he was actually gone. The EMT's stabilized him and he spent yesterday afternoon and early evening in Danbury Hospital.
His physicians from Duke University Brain Tumor Center, NYU and Dr. Jallo at Johns-Hopkins all coordinated with a local neurologist and the emergency room physician in treating him. In May, Dr. Jallo had left an opening in Tom's skull above and behind his left ear as a pressure release valve in case the tumor cysts continued to get bigger. The CT scans done yesterday showed that the dura, the membrane surrounding the brain, and cystic fluid is now actually pushing out of the opening in his skull and collecting under the skin above and behind his left ear, where he is all distended and 'boggy." Due to Sam's CPR efforts, the safety valve opening in Tom's skull and the EMT's efforts, Tom's life was spared. Dr. Jallo called last night, and he has the CT scan reports. He had been concerned about such a "catastrophic neurological event," and this past May, when he drained the cysts in a follow up operation to the one in April of 2007, left Tom's skull open on purpose.
Tom is on anti-seizure medication and the new chemotherapy (which he just started five days ago) has been stopped. He's sleeping peacefully. Tentative plans are for us to monitor him for the next 72-96 hours, so that the CT scan images can get to Duke University Brain Tumor Center and Johns-Hopkins and be reviewed. All being OK, Emily, Sam and Tom will then leave for Johns-Hopkins this weekend, with probable surgery by Dr. Jallo during the first part of next week.
We're taking shifts staying awake in case we have to get the ambulance back here in a hurry. Sam just went to bed; I'll do until about 8:00 am; then, Emily will watch until early afternoon. One of us has to be awake. The local EMT group is on the alert, and a local neurologist is on call in case of another episode. We'll be following up with the local neurology office here in Danbury and others involved in his treatment when the business day begins in a few hours.
When Tom was lucid last night, he said that had to stay alive to see "Hopkins." He doesn't remember what happened, he just knew that he had to watch "Hopkins," and nothing was going to stop him. The beauty of a child's innocence. Little does he know that our little family almost saw God yesterday.
Will communicate details and any changes in plans as they become available. Bless and thank you, Frank."
Tom your story was exceptional! You inspired me with your courage and your overall attitude. I am impressed by you and wanted you to know this. I read your update by your dad and I pray everyday that you will get better. You are an inspiration and I wanted you to know this.
First, thank you, everyone, for your thoughts, prayers, and your interest in, not only our son, but the health and well-being of all those presented on "Hopkins."
Tom was diagnosed with an optic pathway glioma in March of 2001, when he was examined by our pediatrician at the insistance of my husband Frank. Tom's symptoms were to me very subtle. a turning of the head, an odd lisp, cranky behavior. Our pediatrician examined Tom's reflexes, his eyes, his muscle tone, and, seeing weakness on Tom's right hand side, sent us to a neurologist in our home town. The neurologist sent us for an immediate MRI at our excellent local hospital. The radiologist, seeing the images, immediately summoned the neurologist to the MRI suite, and we tearfully discussed the findings, a huge tumor, the big white blotch you saw on your television screen. That MRI picture is from the initial set of images in 2001. It is only one sheet of a four-inch stack of MRIs that have been garnered over the past seven years.
Our neurologist, Dr. Martin Kriminitzer, referred us to a pediatric neuro-oncology team that was considered the best on the east coast-- surgeon Dr. Fred Epstein, surgeon Dr. George Jallo, and pediatric neuro-oncologist Dr. Jeffrey Allen. The tumor was so large and diffuse that surgery was not an option until its size was reduced. It was decided to start Tom on chemotherapy, a regimen that lasted for one year, shrank Tom's tumor to about forty percent of its original size, and was amazingly effective until the point at which Tom's body became allergic to the medication and he had an anaphalactic reaction.
Since then Tom has been on other chemotherapies-- those proposed by Duke University Medical Center, or Dana Farber in Boston, or by New York University School of Medicine. Tom has MRIs every three months and the effectiveness of each chemotherapy is evaluated, therefore, by a constant monitoring. Every body is different, every tumor is different, and each child will respond to a given therapy differently. It is a concerted effort with many members of a "team" to do the best for the child. When Tom received infusions, the most dedicated nurses imaginable were only steps away. Child Life specialists were available to keep the children entertained and distracted. When Tom's chemotherapy involved oral medication, his blood counts were monitored weekly.
Tom's type of tumor, the optic pathway glioma, oftens spawns cysts, and indeed that was true in our case. As the cyst grew in size it became threatening, but it also allowed, in an odd case of serendipity, a surgical entry-way to the tumor. Our hand was forced to proceed with surgery, knowing that chances were good that Tom's quality of life could be vastly compromised. Through a support website Frank met a marvelous mother, Karen, whose daughter had endured nine surgeries. She encouraged us and enlightened us. Up to the eleventh hour, Frank was insistant that Tom be left able to see. We went to the dolphin show at the Baltimore Aquarium the night before Tom's surgery, in tears at the thought that the last thing Tom might see was dolphins leaping into the air, and after that, nothing. We did not enter into this lightly. Every decision we have made has been as thoughtful and as educated as we, as laymen, could make. We knew that in Dr. Jallo's hands, all would go as well as possible.
We returned to Johns Hopkins in May of this year to address the cyst once again.
Four specialists have reviewed Tom's entire seven-year case history in July to determine the next, best step. In the interim, the cyst has once again enlarged and is now impinging in such a manner as to have caused a seizure. Tom started a new chemotherapy last week, and it may be months before we see results.
The best chance for Tom, and all the other children, is investigation, research, and a "magic bullet" that will save the innocent, the threatened, the precious children who live with a monster in their heads.
Until then, we can only try to maintain their lives, with the utmost quality. To that end, there are people who devote their lives to research; to pediatric medicine on the front-lines of the clinic; to raising money to help families with the expenses of illness; to providing flights to and from hospitals. These are the strong folks who deal with devastation every day.
We owe a debt of gratitude to Drs. Rubin and Ertl, our pediatricians; Dr. Kreminitzer, our local neurologist; the staff at our hospital who see Tom monthly for mediport flushes; Tom's endocrinologist Dr. Belsky; brilliant humorist and opthalmogist Dr. Stephen Mathias; Dr. Jeffrey Allen and his staff, and oncology nurses Erin and Eileen, who have kept Tom alive these last seven years; Dr. Gururangan of Duke University Medical Center, Dr. Packer of Children's National Medical Center; Dana-Farber Cancer Institute; Dr. Jean Donnelly; Dr. Dan Lefton and the staff at St. Luke's-Roosevelt Hospital MRI department; Dr. Yasmin Khakoo; Making Headway Foundation; Rhonda Ryan of "Friends of Karen;" "Children's House" in Baltimore; Ronald McDonald House of Durham and of Washington and their gracious staff; Corporate Angel Network; Erica Baumgart and Richard Chisolm, who know the wonders, whys and wherefores of life, and have a grace and presence so strong that just to be with them gives one strength; to Dr. Jallo who knows the how and where; and to all those who have reached out to us with a keen understanding, members of "the club no one wants to belong to."
Tom, you are an awesome boy. You are so brave, I can't believe it. You have a wonderful family that will do anything for you, and that means so much when the time comes when you need it. I will keep you in my daily prayers. I know you will survive this. And to your parents, wow. You are an inspiration to everyone. My son is 2 1/2, and he began having seizures about 18 months ago. When he would seize he would stop breathing and turn completely blue, we had to give him mouth to mouth during a couple of them to get him to start breathing again. He's been diagnosed with a seizure disorder, but his CT scans, MRI's, and EEG's have all been normal. So it is nothing like what you are dealing with, but I do know what it is like to see your baby, no matter what age he is, not breathing and lifeless. Reece Peyton Blackshear has been seizure free with medicine since October 2007, but thats after 8 months of major seizures every 6 weeks or so, and hospital stay after hospital stay, ambulance ride after ambulance ride, and a 4 night stay in the PICU at Cottage Hospital in Santa Barbara, CA. Anyway, to Tom, Frank, Emily, and Sam, stay strong and everything will be okay, I know it will. You all are amazing individuals in my eyes, heros actually. I have been watching Hopkins since it premiered, and it is my favorite television show because it shows us that life is not perfect, and I think it makes us all appreciate what we have even more. Thank you soooo much for letting us watch your story.
Tom, Emily, Frank and Sam (thanks for the CPR!), you are all in my prayers. I live in CT too and was a patient down at JHH in January. You are under the best care, and with God's help, you all will survive this challenge! Love to all of you. Linda
My son is a brain tumor survivor. I will be keeping your family in my prayers. God bless, Loriann http://www.caringbridge.org/tx/benji
In God we trust - Tom is a brave young man and is in the best of hands at Hopkins. I have been there and seen much! I have a question for his parents - do you feel any responsibility for the "continuation or resurfacing of brain cysts" of Tom's disease since you elected to put off surgery for 6 years? Might it not have been so deeply rooted as to return if the initial small tumor had been operated on and Tom had undergone chemo the 6 years ago? I mean - those cancer cells were traveling through his circulatory system and his body for 6 long years???? What were you thinking!
Tom, You and your family are in my thoughts and prayers. I know how all of you feel. This Aug, my daughter who is now 23 will be a 13 year brain tumor survivor. Your bravery reminded me of her. Recovery was long and hard, but she overcame it all and graduated from high school on schedule and has 2 semesters remaining in college. As for me I was diagnosed with a meningioma 2 years ago in my cerebellum. It is still small and the last 2 MRIs have shown no change in size, so it is a wait and see for me. It is very difficult, but I have to be strong. My daughter's tumor was a rare protoplasmic astrocytoma on her left temporal lobe. I am writing a book about my daughter's brain tumor journey and I hope to have it done within the year.
Tom, I will be praying for you as you enter another surgery. Stay strong and brave and keep bringing joy and inspiration to all. You are rare gem; truly a gift from God.
Dad, please keep us posted. I feel like I've known you all for a long time. Hugs to all.
Hi Tom,
You are one courageous, brave guy. Thanks for sharing your story with me. You remind me of me at your age as I too was a hospital kid as well, and I'm 50. You have great folks who love you. I will pray for your recovery. Be well Mr. Bill
Hi there...I too am a brain tumor patient. I am fascinated with neurology now and I'm glad the parents of this young man finally let him receive the surgery he so desperately needed. I was also very scared when I was told I had a tumor the size of an orange, but I also knew going without the surgery would only make matters worse. Also, I have had my first seizure since having the tumor (Meningioma) removed and I don't remember a thing during the seizure. I hope to start a local support group in our area since the closest groups are located in Atlanta. Hang in there...having your skull messed with is not a fun thing and you start having weird feelings on your scalp when you're cold, hot, happy, sad...basically, anytime you get goose bumps...haha. I hope your future is bright and maybe one day in your near future you will not have to hang out at the hospital and can be in the familiar comforts of your family's home. Take care and I hope dad keeps the updates coming.
I just watched the episode with Tom in it. He is an amazing young man. I don't think I could be as brave as he is. Hope the future is bright for this young man. He is special.
Tom, I was very inspired by your story. Boy are you brave! Continue to keep such a positive outlook on life as you had on the show. I will keep you in my prayers. May God bless you and your family.
You are an amazing young man! You are in my prayers and I am pulling for you! Take care of yourself.
You are so BRAVE! I wish you the best of luck with your life! God Bless You!
Tom, I hope your surgery is sucessful and everything turns out to be fine. For such a young man you are handling this crisis with courage and bravery beyond your years. To think of what your parents are going through first before yourself that takes the ultmost understanding of other's feelings and emotions. I pray you and your family will come through this whole ordeal stronger and closer together. For I will keep you in my prayers everynight that God says Tom, don't give up your fight. For I am not ready for you up here in heaven. You have many, many, many more years to spend with your family and friends. So hang in there Tom, and remember everyone loves you down there and wants you to get through this without anymore heartache in the years to come. So Tom, Good Luck To You On Your Surgery and Remember If You Need Someone To Talk I Am Here. I Have Big Ears.
Much love always, Auntie Gwen and Steve
