The Short Story:
Amanda was diagnosed with a brain tumor on her left frontal lobe about 7 weeks ago. Most of it was removed by surgery a week later. She is currently receiving radiation treatments to destroy the rest of it.
The Details:
On August 4th, somewhere around 2am, Amanda was feeding Katelyn in her bed when she fell over on top of Russ and woke him up. Russ said she was white as a sheet, and her lips were nearly black. She did not have a pulse and was not breathing.
Baby Katelyn was asleep at this point so Russ moved her to another part of the bed and performed artificial respiration and chest compressions on Amanda. At some point Amanda opened her eyes and sat up, but she remained totally unresponsive and vacant.
At that point Russ called 911. Even though she was awake, Amanda’s breathing was so shallow Russ couldn’t see her chest move or feel her airstream, so at the advice of the operator, Russ continued to give her the occasional breath. It is interesting to note that during all of this, Russ got a bloody nose, so there was blood on Amanda’s face when the Paramedics arrived. And blessed little Katelyn did a good job of sleeping through the whole thing.
Later that morning in the E.R. after a CAT scan, a neurosurgeon determined that she had a tumor on her left frontal lobe that had triggered a seizure. Apparently that’s a good place to have a tumor, as there is not a lot of essential stuff going on in that part of the brain. The major concern with a tumor in that area is that it will affect personality, but the neurosurgeon figured if she were going to have problems with that, we would have already seen evidence.
After a couple of MRI's, they determined that the tumor measured about 6cm x 2cm or about the size of a tangerine. At that time there was hope that it was only attached the meninges or lining of the brain, but that did not end up being the case.
Amanda was given a steroid prescription to reduce swelling due to any trauma invoked during her seizure. She was also given a prescription for Dilantin to stop the seizures, and allowed to go home. Unfortunately she had to discontinue feeding Katelyn while on these medications.
The following Tuesday Amanda went in for surgery to have the tumor removed. They found that the tumor was a glioma and had sent fingers down into her brain that could not be removed with surgery. She underwent several more MRI’s, stayed in the hospital for three days, and was then deemed healthy enough to finish her recovery at home. After a week or so, she was able to return to work.
On August 23rd, Amanda in company with Russ and all four parents, met with her neurosurgeon. Amanda’s mother, Lori Porter, wrote the following from notes she took at that meeting:
Amanda’s Follow-Up Visit with Dr. Welling
Item 1: Diagnosis Amanda’s tumor was sent to U of U (as well as Mayo Clinic for second opinions) and was classified as an antiplasticastrocytoma, grade three, a type of glioma. Class one and two are “slow-growers” and class three and four are “fast-growers.” Class one and two do not respond well to radiation, however, class three and four do. Consequently, Amanda will be starting radiation therapy within the next two weeks. This specific type of tumor, if it regrows, grows at the same site on the brain. It is also important to note that Dr. Welling removed as much of the tumor as he could see through a microscope, so the “fingers” that were left were sub-microscopic. Fortunately, it also does not metastasize, meaning it will not grow in different parts of the body.
Item 2: Radiation Radiation therapy will be performed at Ogden Regional Hospital and will last five weeks. She will be under the care of a radiation therapist and her treatment will be daily, Monday through Friday. Once it is completed, she will no longer be scheduled for any further generalized radiation therapy, as that is all that her brain can tolerate.
Item 3: Chemotherapy Doctor Welling will continue to perform any future surgeries on Amanda. He has referred her to a neuro-oncologist, Doctor Vincent Hansen, a specialist at McKay Dee Hospital. He will evaluate her and determine if an oral chemotherapy drug (tamedor(?)) would be useful in her case. It is very well tolerated and should have minimal side effects. This treatment, if implemented, should only last a few months and she would receive no further chemotherapy once this round is completed.
Item 4: Monitoring for Regrowth Following her radiation and possible chemotherapy, Amanda will be monitored by Doctor Welling for future regrowth. She will receive her next MRI in three months. She should eventually be down to only one MRI per year. She will be monitored and frequently checked for the rest of her life to catch any potential regrowth that should arise.
Item 5: Possible Future Radiation Should regrowth occur, the doctor would perform another surgery and once again remove the tumor. If necessary, the next step would be a specific type of radiation called stereotactic radiation therapy. This is a more focused beam composed of gamma rays designed to only destroy the tumor cells and leave the healthy tissue intact. If radiation and surgery are ineffective, she would be a candidate for University of Utah’s Cancer “Protocol” which, generally, is defined as pulling-out-all-the-stops there and at the Huntsman Cancer Center to do all we can to fight off the infectious cells. We hope and pray to never have the situation grow to that degree of severity, but it is comforting to know that the option is there.
Item 6: No More Drugs! Amanda is being taken off of all drugs that she is currently on within the next few days. The only drugs she may possibly be on will be the chemotherapy, if Doctor Hansen chooses to use it. She has been cleared to return to normal activities, no restrictions. *Note* She does NOT have a plate on her head, just “hinges” so the doctor can more easily access the brain again if necessary!
Item 7: Good! A final positive note to leave off on, when given the options between poor, fair, good, and excellent, Doctor Welling rated Amanda as having a “good” prognosis. Due to the current technological advances we have, Amanda’s prognosis is “good” rather than “fair.” We’re so blessed to live in such a modern age where technology can be used in such a positive way. Thanks for all your love and prayers. We love you all!
Today, Amanda is in the midst of her radiation treatments and doing very well. When her radiation concludes in about 3 weeks, another MRI will determine if chemo or other treatment is needed. She is fatigued, her appetite is down, and she has experienced some hair loss, but her spirit is indomitable! She cheers all of us and expresses her gratitude at being able to feed Katelyn herself.
We are overwhelmed by all the concern that you, our friends and family have shown to Amanda and the rest of us. Thanks to all of you for your well-wishes, good karma, and prayers. May God bless you for your goodness.
Amanda adds:
I have been told by both the chemo doctor and the radiation therapist that they don’t think I will need chemo. They say my prognosis is so good because I am young, am otherwise healthy, and Dr. Welling did a great job of getting so much of the tumor out. They believe that we should be able to put the tumor into permanent remission, and the hope is we will not have to deal with any re-growth. There is no guarantee, but they seem very positive, and that makes me feel very optimistic.
Starting radiation:
