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Information Links For Brain Tumors
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COMPILED TREATMENT BIOS OF BRAIN STEM GLIOMA PATIENTS
Compiled Bios Latest Update as of
10/31/97
Please be advised that most of the children or patients listed on this page are now deceased even if it is not
indicated. A few are still alive others I have lost contact with, but I am assuming it is because their child has died
and they no longer want to update this page. Hopefully some of this information will help you
to understand the course that this terrible disease takes and why a cure is so badly needed. If you attempt to contact anyone from
this page be strongly advised that they may be in the grieving stages and it might be very difficult for them
to reply to you. Please use tact and judgement before contacting anyone from this page.
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Kristen Kenzig, 9, Pontine Brain Stem Glioma, DX 12/96 Reoccur 7/97
First some backround for you and how we are fighting this thing and why.Kristen presented with symptoms in a very strange way. She was fine one day excepting an ear infection, and unable to move or speak the next, just about comatose. (This was two days after christmas this past year) After several test and infectious disease specialist ordered her an MRI and that is when they found the tumor and called it a diffuse pontine brain stem glioma.
Kristen had six weeks of hyperfractioned (twice daily) radiation at the Cleveland Clinic.(5400 rads) She responded very very well to the radiation however I am told this is not uncommon. After a week she was able to start moving some body parts after two she was talking and after 3 she was walking around again! She was on a very high dose of decadron and gained 35 pounds. After all was said and done. She finished the radiation in MID February. Two weeks later we started her on Tamoxifen 10mg twice daily. I also have been using the antioxidants, Vitamin C, Beta Carotene and Vitamin E, since then. I give her one or the other on an every other day basis(ie Vit C mon Vit E tues BC wed E and C thurs etc)The antioxidants help the immune system while on the steroids and I have done extensive reading on hyperoxygenation and why it is good for the body. A week later I started her on St. Johns Wort (.3% hypericin over the counter)250mg twice daily. This has two pluses, 1 it is a protein kinase inhibitor C like the tamoxifen and 2 it helps curb the mood swings she gets from taking the steroids. Add to that pepcid 10mg 2x daily to protect her stomach lining and calcium tablets to prevent osteoporosis from the steroids.
She came down with mastoiditis in June 97 a result of the radiation effects on the mastoids I am sure. She was treated with IV antibiotics for two weeks. In July she began having vomiting problems and a more pronounced gait and double vision when she looked up. We took her in for an MRI scan and found that there was dots of what appeared to be tumor spread throughout the radiation field. Not on the brain stem. We started her on Oral VP16 on 7/25/97. 50 mg once per day for three weeks then a two week rest and then we will go another round for three weeks. She takes .5 mg of ativan a half hour befor the VP16 to settle her stomach.
How we tapered the steroids
We employed the help of an endocrinologist. This is the type of doctor to see, the neuroncologist is ambivalent to how to ween these kids properly. What we did is immediately switch her off of the pill form of decadron to a comparable dose of liquid prednisone called pediapred. We weaned her 1 cc from each dose every 4 days (ie she took 3cc 3X per day so she would go down to 2CC 3X per day). When we got all the way down to 1cc 3X a day we went to a less powerful steroid called Cortef also in liquid form.(they do make tablets) We did the same procedure with cortef. What I have learned though from this doctor is and this is why so many kids end up in comas even though they are in remission is that if she should get any type of infection the bodies need for cortizone is immediate and even up to a year after being off of the things the body may not produce enough to compensate thus the results being a coma. I carry a hypo and extra dosage of the Cortef everywhere we go for this reason. The instruction is to give her 15cc orally if she cant keep it down twice use the hypo. By then she will be passed out and you would be calling 911 I was told. At any rate since most parents dont see an endocrinologist they never learn of this stuff. Kristen has lost 20 pounds in the last two months and now we have as of 8/1/97 increase her back up to 10 mg of the Cortef twice a day to compensate for the new tumor. As the weight came off her strength and agility have returned. I hope this new dose does not make her gain too much.
The MRI Results
The first mri showed a dramatic shrinkage in the tumer 80%! The second MRI two months later showed further shrinkage. The next three monthly showed no change. The latest MRI in July showed little white dots throughout the radiation area. Not in the original tumor location in the brain stem. The two MRI's done in August showed changes in the tumor...and it was described as a Leptomeningeal spread of the tumor. The original area in the posterior fossa that was radiated still appeared to have no change.
Side Effects
Of course the weight gain and stretch marks, an occasionally bouncing of the leg which seems to have gone away for now, and the worst she has lost her hearing on the left and the right is diminished. She appears to sometimes revert to baby talk but I have read it is not uncommon for kids to drop 10-14 IQ points from the radiation in the clinicals. Hearing has come back quite a bit since we have worked at the mastoiditis.
As of August 1997, Kristen has had increasing symptoms of tumor progression. We are maintaining the VP16. She has problems with her right eye closing and moving around uncontrollably, increased double vision, spasms in her legs and difficulty walking. She has been drooling constantly out of the side of her mouth, has been having problems swallowing and on occasion slurred speech. At times the left side of her face will droop completely....and then it will go back to normal. She has gained another ten pounds over the last week due to the increased Cortef usage.
Kristen passed away on September 14, 1997. See her story at http://www.concentric.net/~Jimkenz/kristen.html.
She had what was known as a leptomeningeal spread of the tumor. It shut down her swallowing abilities and brain functions. Her lungs filled up with fluid and she was unable to breath.
Jim Kenzig
Father of Kristen, 9, Pontine Brain Stem Glioma Dx 12/96 Reoccur 7/97 Died at age 10 9/14/97 9/3/87-9/14/97
webpage <http://www.zoner.net/zoned/>
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Dear Jim and all,
I have not posted Amy's bio because it was too hard for me to do. But now that I realize that it might help other people, here it is for your use.
Amy Simon, age 12, was diagnosed with diffuse pontine brainstem glioma November 20, 1996, after months of misdiagnosis: sinus infection and primarily phychological problems. Her symptoms began to show when she went to school in late August and felt terrible emotionally all the time she was there, although as I look back, I can see symptoms earlier, car sickness on vacation, loss of athletic ability, occasional emotional outbursts. Her physical symptoms progressed, including dizzyness, headaches, vomiting, car sickness, and on and on, finally culminating in double vision which finally led to a CT scan and then an MRI. I had asked a psychiatrist if she needed a brain scan only a week before, and he said "No." By the time she was diagnosed, she was very very sick. She could not sit up.
After the diagnosis, we went to Children's Hospital of Michigan, in Detroit, where they concurred with the "no surgery" verdict. We also sent our films to Dr. Epstein in New York, and he too agreed. After a shunt was put in to ease the swelling, Amy began radiation therapy Thanksgiving weekend. I have lost in my computer files the specifics that our radio-oncologist sent when I was working on her bio the first time, and I am sorry. I will continue to look. But she had the maximum lifetime dose of conformal radiation, then she had stereotactic surgery (new to me until he sent the reply to my request for info) which at the time they described to us as a very precise, potent radiation beam, using a different system. They used a computer and MRI to make a three dimensional diagram, and then carefully positioned the radiation, using a mask to hold Amy's head in place. Both kinds of radiation treatment utilized a mask, made from a cast type material. The radiation treatments took the usual six weeks. Anyone who would want more information about the radiation therapy used could contact Dr. James Fontanesi or Dr. Paul Chuba at Harper Hospital, Gershenson Radiology and Oncolgy Center (313)745-9197. Her radiation ended January 6. Half way through the treatment, they did an MRI and found the tumor to be shrunk 50%.
Concurrently, Amy had three rounds of taxol, 24 hour drip, approximately three weeks apart. The first was after Thanksgiving, the second just after Christmas, and the third January 17. Her counts only dipped once to a level that required her to stay away from other people. And throughout all of this, she got better and better. She lost her hair, but that was the only visible symptom. She had mouth sores, aches and pains, but in all, handled the treatments quite well.
Each MRI showed shrinkage, until, finally, in April, the drs. decided that her tumor was small enough (2cm) for brachytherapy, radiation seed implants. (The original tumor had been about 3 inches at its widest part and shaped like a fan) The surgery was done on April 23, one day before Amy's 13th birthday. The surgeon was Dr. Lucia Zamorano, a superb neurosurgeon at Harper Hospital. (313)966-0342 They implanted 0.8 mCi of I-125 (capital i for iodine) in the form of doubly encapsulated seeds. Amy was one of only three children who to my knowledge have received implants in the brainstem, although Dr. Zamorano had done over 300 of them to other areas of the brain. The surgery was very easy for Amy, and she came home the next day. The implants continue to emit radiation at the tumor site and will do so for a year.
Follow up MRI's showed increased areas of necrosis, areas of dead tumor. There was much swelling, and treatment with Decadron was necessary. She had been on Decadron earlier, of course, but had weaned off it with minor problems. This time she is still on it as of today, August 20, and has had difficulty coming off it. We are now at 1 1/2 mg a day.
Currently, she is showing many many ugly stretch marks and Cushings syndrome due to the Decadron, ataxia of her right side (weakness and loss of function), hearing problems, slurring, and numbness in her cheek and leg. The ataxia perhaps is caused by radiation, either the original course or the implants, and as it started before her last MRI, we hope that is the case. She has another MRI on August 23, and I will post the results to add to this bio.
Amy takes vitamin B complex, fish oil ( omega 3 fatty acids), hypericin (St. John's wort, which may account for her recent excellent spirits), calcium, a multiple vitamin, and recently Coenzyme Q10. Some were suggested by a doctor who prescribed her physical therapy, some from this list. Her primary oncologist allows these, but does not suggest them.
Sept. 1, 1997-The results of Amy's MRI last weekend were positive. There is no new tumor growth, but lots of what seems to be "swelling" and/or necrosis. Up again on the darn Decadron.
Her condition had been going downhill rapidly in the last couple of weeks: more unsteadiness, weakness, less function of right side, deafness, slurring, double vision, and wanting to just sit. We of course were very worried. It appears, though, that this is caused by the swelling, necrosis, and/or the radiation, either latent effects of the original course, or the implants zapping away in there. At one time the dr. thought it was taxol neuropathy, but since Amy has reflexes, she doesn't think it is.
As soon as we increased the Decadron, the downhill slide ceased, and things improved somewhat. Lots more energy, less unsteadiness, even some hearing improvement, although the hearing is basically gone on one side.
Hopefully this will help someone. Amy succumbed to the disease in 1998 and is now deceased.
Jo-An Simon chjosi@aol.com
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Date: Mon, 30 Jun 1997 23:47:24 -0500 (CDT)
From: Adam COHEN <cohen@math.uchicago.edu>
Here's my sister's bio:
My sister Jessica was diagnosed on July 4, 1996 at age 23. She was at NYU hospital at the time, but we quickly brought her back to Phoenix and she was treated by Dr. Russell Walker at Barrow Neurological Institute. Her symptoms included uncontrolled crossing of the left eye, loss of control of the right arm and leg, slurred speech, and general confusion. She had no headaches. She was put on decadron for swelling. Her treatment was six weeks of standard radiation (5400 Rad) followed by 600? Rad stereotactic boost with the peacock system. During this time she was on a macrobiotic diet supplemented with anti-oxidants (I'm not sure which ones). She was also treated by a group of energy workers once a week during the radiation. (I'm a bit skeptical about things like energy work, especially as I was never able to get a coherent explanation of what they do. Nevertheless, I can try to answer questions about them as best I can.) Following the boost, her symptoms began to improve. In November, she then went to Philadelphia for treatement with radioactively labeled antibodies to EGFR st Hahnnemann under Dr. Curtis Miyamoto. During that time, she was weaned off of decadron. She also moved out of the wheelchair and began to strengthen her arm. In January she began chemotherapy, carboplatin and vincristine. In the meantime, she has gone through physical therapy.
The only remaining symptoms are some double vision and short term memory loss, probably from the radiation. If you want more information, let me know. The cutoff between adult and children is usually around 18-21, so it's not clear how relevant my sister's experience will be for you all. Then again, there's so few adult brainstem gliomas anyway, that we've considered it a "pediatric" tumor for research and treatment purposes, except that there was no reason not to do radiation. Jessica's symptoms reappeared in February, 1998. Despite several treatments including tamoxifen/VP-16 and CCNU, she passed away on June 29,1998
Adam Cohen
brother of Jessica
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Subject: Our Story
Date: Thu, 17 Jul 1997 12:20:25 -0400
From: "R. J. Porter" <rjp@emilab.com>
Hi All,
Justin is our six year old son. He was diagnosed on December 15, 1995 at age 4.5 with a Glioblastoma Multiforme in his rain stem ...pontine. We took him to Dr. Michael Edwards in California for a partial resection where the pathology was confirmed. He had the hyperfractionated radiation and PCV chemo at Duke until March 4, 1997 when progression was confirmed on MRI. We are currently on 2 mg Decadron twice a day and this may have to go up because on his last MRI,Friday they told us hydrocephalus was now evident for the first time.
We hope to get him started on synthetic hypericin by Monday. His platelets are still low (we hope from the chemo in March, every other reason is worse) so he can not tolerate any other chemo. He is having trouble speaking and swallowing now and last night he started with the headaches but none so far today (Thank our Lord).
We have two other children, Joseph 19 who has decided he doesn't want to live with us any more, and Ryan 3 who is a hand full. We live in Coeburn, Virginia which is only about 30 min from the Tennessee line.
My wife, Gina, is a pharmacist and I am an environmental chemist and have a laboratory here in Coeburn. Yes our dinner conversation is somewhat boring to the kids at times I'm sure. We think Justin has done very well as compared to what we were told early on, however we still need our miracle which we pray for at all times. Justin's tumor is doubling about every 4 to 6 weeks since March. The decadron is causing problems with his skin around his bottom area and the yeast infection in his mouth just will not quit. These problems are things we can handle, but the hydrocephalus and the swelling might be a real bit of trouble because the docs no longer feel Justin is a good surgical candidate because of his labored breathing. The shunt thing may be out all together and we really don't want to go up on the decadron again with the problems we already have. Justin is great, he still smiles each day and loves to watch his little brother play and watch his HO trains (10 all together). We need all the help and prayers we can get. Any info will not be wasted on us and please feel free to ask questions if you have need. Thanks for including us in your group and may God show His love to each and every one of you.
Randy & Gina Porter
Proud Parents of Justin (6) GBM Brainstem dx 12/95
Justin Porter passed away on Saturday, August 30th, 1997
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Subject: [Fwd: Re: Tumour Bio-Laura Nelson]
Date: Thu, 31 Jul 1997 21:43:38 -0700
Laura Nelson, l4, weight: l05 lbs.,Colorado Springs; dx ll/96 w/brainstem glioma - diffuse, about 2 cm, in medulla Symptoms: noticed sometime summer l996 eye nystagmus (sporadic twitching of eyeballs from side to side).
Treatment to date: 900 mg monthly carboplatin IV, 2mg Vincristine push weekly, 75mg/day VPl6(Etoposide) - commenced l2/5; ended 4/22/97. Treated with All-trans Retinoic Acid (ATRA) for about a month (l00 mg/day). (This is a form of Vitamin A and differs from Cis-retinoic acid (Accutane). It's action is on cell-differentiation, causing cells to mature and die rather than endlessly reproducing. Chief side-effects: headache, skin dryness. Laura had to stop because of allergic reaction which caused her eyelids to swell almost to closing.)
Began new "roadmap" of chemo 5/22/97 with 900mg carboplatin & 2 mg vincristine. Carbo dose was error; thereafter will be 540mg/monthly with weekly Vincristine pushes for 2 more months. No more VP-l6 (apparently this has a max lifetime dosage limit which Laura has reached).
Began 8mg decadron daily at dx, weaned to 30mg Cortef, now(6/28/97) weaned to 5mg/day, to stop in l wk. Also 2 Sulfameth M,Tu & Wed. as pneumonia preventative. Also gradually began giving "alternative" meds in April. Now taking daily: 2420mg astralagus (to boost WBC); 2400mg beet root (boost hemoglobin); l200mg garlic (cancer fighter, also effective against werewolves); multi-vitamin & colloidal minerals; 4 oz. Essiac tea, l cup green tea (who knows?); 2080 mg Squalamine (antiangiogenic); 3000 shark cartilage (ceased - will try retention enema); l000mg Reishi/Shitake Mushroom (cancer fighter). Also have "in the wings" St. John's Wort (not good at 6,000 ft. in Colo sunshine), Pau d'Arco (cancer fighter), and Milk Thistle (liver detox).
Since dx, both MRI's (last being 4/27/97) show no changes. No additional symptoms; eye nystagmus seems the same. Looking at Laura, one wouldn't guess she has a bt. Blood levels have fallen sharply twice necessitating hemoglobin and platelet transfusions. Procrit injections were given for about two wks every other day to boost red cells production; 3 shots Neupogin given to boost WBC. Treatment: Continue lo-dose carbo monthly & weekly Vincristine. Doctor proposing external beam radiation for 6 wks., to be decided based on results of next MRI end-July.
There you have our saga. Certainly have no idea whether any of this herbal stuff is anything other but garbage but....... Hey - vincristine from periwinkle plant! Of possible use to you may be the ATRA. Bill Mouser (Cheska's dad) doc spoke with ours and tried on Cheska (sadly -too little too late). But apparently the docs thought this may have some merit. Have also talked with Phil Kish (PhD researcher-type) at U of Mich who had(has?) been working on this with lab animals. It is also - I believe - in Clinical Trials somewhere (UCLA?) Also have "talked" with Chemist Dr. Willi on List re ATRA. His wife is on cis-retinoic acid. Willi's idea was to alternate the two - giving one for l0 days to 2 wks., resting for 2 wks, then starting with the other. Bill Mouser's doc also added Vitamin D3 to maximize uptake of the ATRA. Our doc also had a boy here in CS with pontine tumor on it as well as girl in Wyoming. It arrested her tumor for several months. Since then, our doc learned it is best taken with VPl6 or other chemo agent. May be worth checking out - maybe not as goofy as Chinese mushrooms......
Hope this helps and is what you wanted.
Susan, Laura's mom
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Subject: bsg
Date: Sun, 29 Jun 1997 03:01:44 EDT
From: tallyho@juno.com (Carole A Manning)
To: jimkenz@concentric.net
Thank you for your E Mail. I tend to either write a lot or nothing at all. I definately appreciate being on the list ( although I know we can think many alternative lists we would all prefer ) We return to Portland next week for Carly's 10th blood brain barrier disruption. Last month she was changed from methotrexate to carboplatin as 2 new areas were seen on the CT. Carly has actually done extremely well, the treatments are not easy, she is quite an incredible human being, one who I truely admire. She has faith, and a great deal of stubborness which can be good as well as bad. Let me know how I can be of help to anyone. I dont get my mail daily, just when I have the time.
Take care and keep me posted.
Carole, mother of Carly 11 bsg dx 7/13/96
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From:NCYBASS@AOL.COM
TJ's Bio
TJ's Bio First symptom: Mid December 1996. TJ started feeling tired and seemed a little clumsy right before Christmas. We thought it was the Christmas excitement and he was over tired. It continued after Christmas and his clumsiness increased, he would bump into walls, etc. Again, we attributed it to being over tired. Then when he went back to school he started feeling dizzy. Diagnosis: We immediately took him to the pediatricians. They thought he might be suffering from allergies due to a fresh Christmas tree. They put him on medication but said it would probably take about a week before he would be feeling better. After a week there was still no improvement, so back to the pediatricians. By this time, his right eye was starting to wander. They did some coordination tests and sent him off for a CAT scan. The date was Jan 17, 1997. They told us immediately that there was a very serious problem and that he had a mass and it appeared close to his brain stem. We were sent immediately to Children's Hospital in Boston (we live in NH). He had an MRI that evening and it confirmed that in fact, he had a brain stem glioma. Original size was 6x5x4.2 (126) Treatment: TJ was treated with excellerated hyperfractionated radiation for a total of 5400 rads. He was on decadron during and immediately after radiation but has had no other chemo therapy. Two months after radiation tumor size was reduced to 6x4.5x4.2 (113), not much. Other: On May 1st, TJ started experiencing double vision and headaches. An MRI showed no change to the tumor and causes of symptoms was diagnosed as radiation side effects. TJ was again put on a full course of decadron. On Aug. 5th, TJ's balance tested off. He also was exhibiting some hearing problems. He was put back on decadron (low dose) thinking that it still might be radiation side effect. MRI on Aug 6th showed further reduction in tumor size to 4x3x4 (48). A hearing test on the 11th showed TJ's hearing had returned and no infection. Could the infection be masked by the decadron?? Could the ear problem be what was causing his wobbliness, he is not experiencing that anymore (at least not any that we can detect)?? We have also added St. John's Wort (hypercin) to TJ's daily routine.
Future Treatment: In mid-July, we also went to see Dr. Packer for National Children's Hospital in Washington D.C.. He agreed with TJ's onc's at Dana Farber in Boston, that while TJ remains stable they do not advocate any further treatment. Treatment options have been discussed if/when there is tumor progression. As you can see, TJ's tumor is too big to consider radiation implants. As you all know, with bsg, your child's treatment becomes an extremely personal decision. We need to learn from each other and respect each others opinions. Current (Aug 25th) TJ is feeling pretty good. His decadron level is currently 2mg 1xday. He will start 6th grade tomorrow. We are trying to get him swimming at least 4 to 5 days per week to help with his weight and stamina. And as with all families dealing with this awful disease, we are grateful for each day and pray for another. TJ Died in November of 1998 from this disease.
Nancy
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After presenting with progressive symptoms over the course of a year, my daughter Luanne, was finally diagnosed as having a Brain stem Glioma in May 1994. Luanne received Radiotherapy at a dose of 5000 cGy in 30 fractions over 42 days. This finished on the 29th July 94. During this time she was also taking Dexamethasone at various doses ranging from 1.5 8mg per day and she had 10mg of Maxalon for her sickness. After radiotherapy she deteriorated rapidly and by the end of September was in a wheel chair. Luanne could no longer wash or dress herself, could not write,cut food, when eating she often choked on the food resulting in it coming out her nose. Her speech was slurred and she also got breathless just by trying to talk. Luanne had double vision over all fields of view and she was suffering from panic attacks as well as sickness each morning. On the 26th of September we went to Canada for 4 days treatment by a Dr. Rudi Falk. The drugs she had were 30 mg C-BPR , with 30mg Hyaluronic acid, and 20 mg Hyaluronic Acid with 30mg/1ml Toradol ( Votarol). They were given by I.V. on a daily basis for the 4 days. On returning home she continued on this treatment twice a week by I.V. However the drugs were unlicensed in England so I was taught to use her line and for the following 11 months I gave her the treatments. During these 11 months Luanne improved tremendously and when we stopped the treatment at the beginning of August 95 the only problem Luanne had was her double vision. In April 95 Luanne was well enough to return to school to complete her "A" levels. Her grades were high enough for her to get a place at Imperial College of London studying Biochemistry, and so in October 96 she started university. Luanne remained stable until February/ March 97 at which time she gradually grew weaker on her right side. In April Luanne had another pet scan which was compared with her previous one that was taken when Luanne was at her best in August 95. The results of this latest PETscan shows some new tumour growth. At the same time Luanne had another M.R.I. scan, however this was also compared to her last M.R.I. which was taken when she had just started to walk again . Hence this report shows tumour shrinkage. Luanne never had an M.R.I. scan done when she was at her best (August 95 onwards). At this point in time Luanne still has a large tumour (although a fair amount of it is dead) which is continuing to grow.
Her symptoms at the moment are:
Weakness in the right limbs
Difficulty guiding a pen although she can still write very slowly
Her double vision has been the same since 95
Emotional incontinence (laughs out for no reason and cannot control it)
Gets breathless just walking and talking
Urgency and frequncy in needing to pass water
Luanne has started back on the treatment she received in Canada, and if it were to work we would see some improvements within the next month.I'm trying to find out the longest survivor with a bsg is there anybody on your list that has had their tumor prior to March 93, which was when Luannefirst had symptoms. Also could I have a copy of the bio list.
Mandy mother of Luanne aged 20
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Jim,
I will give you what info I can right now. Hopefully, I will have more after Collin's MRI on August 30. Collin is 10 years old and until now has never had major problems. At around 2 years he had a Fibril (sp?) seizure they called it (lasted about 20 min.). This is where your temperature gets so high your body shuts down temporarily until the temperature drops back to a lower range. Both my younger brothers had this at about the same age. The doctor said it was common and that many kids had it during the night and might not ever even know it. He had no effects from it. His sinuses are almost as bad as mine. In the past he has taken Poly-histine-D, E-mycin and Lorabid.
About a month before his symptoms he had an infection in a tooth. It was due to come out anyway so they pulled it. During the first week of May of this year Collin complained of some dizziness and occasional double vision. We took him to his pediatrician who thought it was a virus in his sinuses and sent him home with a decongestant. After 5 days and still dizzy we took him to an ENT doctor to see if it was a middle ear infection. He did a few tests and drills and immediately thought it was more serious. He got us an appointment with a pediatric neuro. for that afternoon. The ped. neuro. ran an MRI without contrast that same afternoon and told us the next morning that it was a BSG, he referred us to mes-Murphy, Memphis, Tenn. who looked at the scan that day and referred us to St. Jude Children's Research Hopital, also in Memphis, where we had an MRI with contrast done that afternoon which was a Friday. We met with the ped. neuro. onc. at St. Jude on Sunday where he confirmed the diagnosis. On Monday they sent the scans to MD Anderson for a second opinion, which was confirmed. On Tuesday they did a mock-up of the radiation treatment for a trial run-thru and to line everything up (put marks on his head). Radiation treatments (Conforming 3D Stereotactic) started the next day (Wed.). Friday night Collin was admitted to the hospital because of severe reaction to the radiation. They said they hadn't given him enough Decadron at the start. He couldn't keep the Decadron down so they gave it by IV. By Monday morning he had made a full recovery, was dismissed and started his radiation treatments again with no further problems. About one week later, at the suggestion of our ped/neuro/onc and after a little research, we started high-dose Tamoxifen (we also looked at VP-16). The dose is 70 mg in the morning and 70 mg at night and we continue that to this day (at present about 4 months) with no apparent side-effects. Since about two weeks into his treatment Collin has never again complained of any dizziness or double vision. His main side-effect was from the Decadron. Collin went from toothpick thin 50 lbs. to 75 lbs. in about 3 weeks. Prior to this he ate like a bird, hardly ever finishing a whole sandwich or meal. Suddenly, he was eating 2 sandwiches or a full stack of pancakes plus toast and would be hungry again in a couple of hours. This was a big shock for us. We tried not to refuse anything but were concerned about the weight gain, although the nutritionist said he was under-weight in the beginning and needed to be around 70 lbs. We are presently tapered down to 1/2 mg Decadron every other day for 10 days and then off completely (7 days to go). He has had no problems coming down, his weight has stabilized and appears to be dropping and his cheeks don't appear to be as puffy as before. We are working with a P.T. to get his muscle strength back. He also has some stretch marks on the front of his thighs which we treat with Palmer's Cocoa Butter Formula with Vitamin E cream (my wife used it when she was pregnant). I might also mention that he takes Zantac 75 a.m. and p.m. and took Ondansetron in the very beginning, but when he was dismissed from the hospital after that first reaction he never felt nauseated again and we stopped taking those.
Aug. 30th, 1997-Collin had his first MRI today since ending radiation treatments mid-July. Dr. Walter reported significant shrinkage of 50% or more. He said this was great, but what was most important to him was no more evidence of swelling or tumor in the pons. We will continue the high dose Tamoxifen (70mg a.m. / 70mg p.m.) and have scheduled his next MRI for the first week in December.
10/31/97 We've had our first major set-back since the early part of Collin's treatment. His first post radiation scan showed 50% shrinkage and no tumor in the pons and he had been back to normal for weeks. One month later or about four weeks ago we went to Orlando on a Make-A-Wish trip (I highly recommend it and am so glad we did it when we did). About a week after we got back he complained that he was having occasional double vision. Within another week he had constant double vision and 80% loss of motor skills on his left side. Except for no complaints of dizziness the symptoms were identical to those that put him in the hospital on his third day of radiation treatment (due to starting on too low a dose of decadron). Dr. Walter put him back on 3mg of decadron a day during that first week of new symptoms, but saw no progress. He is now on 8mg three times a day and his symptoms as described above appear to have stabilized but have not gotten any better. He had another MRI at the end of that first week of new symptoms, which according to Dr. Walter showed that the tumor had not necessarily grown but had definitely changed. He said it was more of a change in shape and that it also had a body of necrosis in it. He felt that it was a good scan since he thought he was going to see massive regrowth due to Collin's symptoms.
Regards,
Mike - Father of Collin, age 10, bsg dx 5/97 Collin is now deceased. He died from his disease.
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Subject:Timeline
Date:Thu, 7 Aug 1997 07:49:29 -0700
From:Teri <Teri@LOCALACCESS.COM>
This is Justin's timeline:
July 1996: Noticed him limping while walking down the airport concourse.
August 1996: Took him to his pediatrician who said he needed to see an orthopaedist.
August 1996: Saw an orthopaedist who had an MRI done on his legs that he had avascular necrosis in his right leg. It was negative. Said he needed to be seen at Children's hospital in Seattle couldn't figure out what was wrong with him.
September 1996: Saw an orthopaedist at children's, he spent 15 minutes with justin did some reflex tests and said he had cerebral palsy. Well it wasn't what I thought it was (Muscular Dystrophy) so I was happy. Said he wouldn't get better and he wouldn't get worse.
October 1996-December 1996: Saw a big change in his right side, he started to look like a person who had a stroke very decreased use in his right arm, he even started to write with his left hand. Now I suspected it was a brain tumor but wasn't sure.
January 1997: Had an episode at school teachers described it as his body was there but his mind wasn't they didn't see any seizures though. We took him to the doctor that day and I told him I wanted an MRI done to make sure he didn't have a brain tumor.
January 28th 1997: MRI done 2 hours later dr. calls to say he has a brain tumor 3x4x5 cm located in his brain stem, pons and medulla. He has to go back to Children's the next day to see a neurosurgeon and oncologist
January 29th: We meet with the doctors at Children's they say that he has probably had the tumor since birth and that if it was malignant it would have claimed him by now. They don't think they can biopsy it because of its location.
February 1997: They decide to biopsy it after meeting with the tumor board. It was done and he got to go home the next day without problems. We find out the next day it wasn't a big enough specimen and it was inconclusive and they don't want to do it again.
February 25th-April 8th 1997: They do radiation for 6 weeks every day we have to drive 2 hours to have it done. 2 weeka after it starts he gets so dizzy that he can't stand up, they start him on decadron 4mg daily. He gains 8 pounds in 4 weeks.
April 23rd 1997: We see his doctor again (oncologist) he sees a big improvement in his strength on his right side. May 21st 1997: We have our lst MRI since diagnosis. It shows a significant improvement, a change in density and it has gotten smaller. July 29th 1997: He has a neuro-psych evaluation at Children's and now we wait until August for the results.
Teri
Mom to Justin 9 Astrocytoma brain stem, pons, and medulla
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Cassandra Scott age 7 diagnosed July 18/97 with "diffuse pontine glioma"
History of the diagnosis:
early 1997/maybe even 1996: Cassie complains of a "hot head" and sometimes needs a cold cloth on her head to sleep. We thought she was copying her Baba, and we thought nothing of it.
early June: Cassie started laughing in her sleep (she had never done this before). We thought this was due to stress because we just bought a new house and were starting to move.
mid-June: vomited one morning, then was fine. She did not have the flu. We sent her to school in the afternoon. Thought nothing of it.
June 25/97: During the last week of school, Cassie said she saw double. When questioned about it, she backed down. We thought she was pretending.
early July/97: Cassie's right eye became slightly mis-aligned. This progressed rapidly to the point where within days it was completely turned inwards toward her nose.
July 4/97: Went to visit the pediatrician about the crossed eye. He referred us to an ophthalmologist. Waited 10 days for the appointment.
July 4th to 15th: Cassie appeared to be getting very clumsy and uncoordinated (stubbing toes, tripping over the edge of the couch, falling, etc.). We thought this was just due to the double vision from the crossed eye, but later realized this was due to a balance problem due to the brain stem tumor.
July 15/97: Ophthalmologist said Cassandra does not have an eye problem, and it could be a tumor. He recommended a CT scan.
July 18/97: The pediatrician sent Cassandra for an emergency CT scan after I told him I was concerned about an increase in headaches and vomiting. CT scan showed an "abnormality" in the pons.
July 21/97: MRI scan confirmed diagnosis as a "diffuse pontine glioma". Tumor is growing, but they think it is low-grade because it didn't enhance on the MRI. (it did not take up any of the dye)
Treatment:
July 21/97 Pediatric brain tumor team agrees it is a glioma based on scans and clinical findings. No surgery will be performed, not even a biopsy. Biopsy would only confirm diagnosis and is considered risky (could suffer permantent nerve damage just due to the biopsy). Surgery cannot be performed. The tumor not a lump sitting on the side of the brain stem. It is spreading in betweeen normal cells (diffusely infiltrating the pons), so the surgeons cannot remove it.
July 25/97 Radiation is the recommended form of treatment
Aug. 6/97 Cassie starts 6 weeks of conventional radiation therapy. Daily dosage will be 180 cGy, for a total of 5400 cGy.
Aug. 11/97 Nausea and vomiting comes under control due to steroids (and/or prayer!). Energy level is back up to normal. You would not know she has a BT just by casual observation. The only obvious sign is a crooked right eye.
Oct. 23/97 Follow up MRI showed significant improvement. The tumor has decreased in almost all directions. In the main area of the tumor, the pons, there is less expansion. In addition, there is still no enhancement with the contrast dye, which means the tumor is still probably low grade.
Clinically, the only remaining symptom is a crooked right eye. Otherwise, the nausea/vomiting and balance and coordination problems have all cleared up. Her energy levels are normal, and she otherwise appears to be a normal, healthy, happy kid. She is going to school (grade 2) every day, goes to girl scouts (brownies) and plays floor hockey once a week.
The treatments went easier than expected. We were expecting a much more difficult time. There were no significant side effects from the radiation (besides hair loss which her long hair covers up), she had no trouble coming off the steroids, and the weight gain that she has a BT just by casual observation. The only obvious sign is a crooked right eye.
Oct. 23/97 Follow up MRI showed significant improvement. The tumor has decreased in almost all directions. In the main area of the tumor, the pons, there is less expansion. In addition, there is still no enhancement with the contrast dye, which means the tumor is still probably low grade.
Clinically, the only remaining symptom is a crooked right eye. Otherwise, the nausea/vomiting and balance and coordination problems have all cleared up. Her energy levels are normal, and she otherwise appears to be a normal, healthy, happy kid. She is going to school (grade 2) every day, goes to girl scouts (brownies) and plays floor hockey once a week.
The treatments went easier than expected. We were expecting a much more difficult time. There were no significant side effects from the radiation (besides hair loss which her long hair covers up), she had no trouble coming off the steroids, and the weight gain that she has a BT just by casual observation. The only obvious sign is a crooked right eye.
Oct. 23/97 Follow up MRI showed significant improvement. The tumor has decreased in almost all directions. In the main area of the tumor, the pons, there is less expansion. In addition, there is still no enhancement with the contrast dye, which means the tumor is still probably low grade.
Clinically, the only remaining symptom is a crooked right eye. Otherwise, the nausea/vomiting and balance and coordination problems have all cleared up. Her energy levels are normal, and she otherwise appears to be a normal, healthy, happy kid. She is going to school (grade 2) every day, goes to girl scouts (brownies) and plays floor hockey once a week.
The treatments went easier than expected. We were expecting a much more difficult time. There were no significant side effects from the radiation (besides hair loss which her long hair covers up), she had no trouble coming off the steroids, and the weight gain that she has a BT just by casual observation. The only obvious sign is a crooked right eye.
Oct. 23/97 Follow up MRI showed significant improvement. The tumor has decreased in almost all directions. In the main area of the tumor, the pons, there is less expansion. In addition, there is still no enhancement with the contrast dye, which means the tumor is still probably low grade.
Clinically, the only remaining symptom
is a crooked right eye. Otherwise, the nausea/vomiting and balance and
coordination problems have all cleared up. Her energy levels are normal,
and she otherwise appears to be a normal, healthy, happy kid. She is going
to school (grade 2) every day, goes to girl scouts (brownies) and plays
floor hockey once a week.
Cassie is now deceased.
Doug Scott <dscott@awnet.com>
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ubject: Re: New Brainstem Tumor Webpage Up Date: Thu, 28 Aug 1997 03:41:23 -0400 (EDT) From: <LadyleFay@aol.com> To: JIMKENZ@concentric.net
Hi Jim, My name is Windy and I'm the mother of Michael. Add us to your files if you like.
After a routine eye exam, we were told to get an MRI. The Doc could see fluid and he believed that Michael had a tumor. That afternoon we had the MRI and were almost knocked over when the MRI showed a tumor in the center of my son's brain. It was pressing the left optic nerve, the hypothalamus and the short term memory center. We live in Palm Springs, Calif which has very little in the way of peds specialists. Michael was 10 at the time. But it was felt that this was an emergency so a local Neuro Surg planted a shunt in Michael the next day. The poor kid was very sick after that and knowing what I know now, I feel they put the shunt in on the wrong side. 4 days later a second shunt was installed and Michael was able to go home 3 days later. The Doc in Palm springs was very up front with us. He didn't feel that Michael could be helped out in the desert or even at Loma Linda, so he fought with our HMO so that Michael could be sent to UCLA which was the only hospital that was doing brain stem work. We were lucky enough to get sent to Dr. Keith Black, the head of Neuro Oc at UCLA. I'm not sure why he took the case, peds isn't his specialty, but I thank God daily that he did. He made us feel at ease, telling us it was ok to smile because they see cases like my son's at UCLA all the time. He was almost certain that the tumor was a craniophangioma (sp) and our main concern was to free the left optic nerve. And two weeks later he did just that. But after 8 hours on the table, Dr. Black felt that Michael had all he could take at the time and to get to the rest of the tumor they needed to go in using another route. So after 10 days in the hospital, we were sent home for the summer and told to come back in Sept. Michael was on DDVAP, synthroid , Prendisone and Dilatin. It was a good summer, even tho we had to measure his input and output. The next surgery was harder on Michael. Dr. Black was able to remove almost all the tumor, except for a small strip. The tumor had been very agressive and had partially grown back. It was very hard to keep Michael awake long enough to get him to eat or drink and the DDAVP seemed to be working too well. At the Oct check up, Dr. Black felt that the shunt had failed and replaced it. In ICU, it was hard to stabilize Michaels sodium. I felt that the DDAVP wasn't working the way that it should and I went round and around with the Endo Docs about it. Michael went home with Dilatin, Cortef , DDAVP and synthroid. In Nov. Michael was dehydrated and back in ICU. This time he went home without DDAVP. In June the last strip was removed. Michael's body clock was out of whack ( Like my technical terms? ;> ), his thirst mechanism wasn't working well and his sodium level was running at about 150.. well above normal, but not it seemed to be normal for Michael. And Michael started to lose control of his anger. In Oct we had our first 'clean' MRI and while we were very happy, I felt we still had a long way to go. No one ever sat us down to discuss what the long term care would be. Dr. Black just told us every thing would probaly come back, but it would take time. The Endo docs seemed concerned about Michaels height even tho Michael's Dad is only 5'6 and the local pediatrician just prayed for my son. Schooling Michael when he was on Dilantin was a waste of time. If Mikey didn't drink, the dilantin would build up and the poor kid was very sluggish. So we started to wean him. By that time it was the middle of the school year. the private school where he had gone wouldn't take him back.. his old teachers actually cried when they saw him. And I had never dealt with the public school system. So I worked with him at home until the following Sept. He was put in the regular 6th grade even tho the last class he had attended was 4th. He'd get lost moving from class to class. He could understand the work but didn't have the skills to get it down on paper. So he was sent to special ed. Drinking and sleeping thru the night was still a problem. And one day after he was late to a PE class he exploded and took a swing at his teacher. Michael has had trouble with his anger now for almost 3 years. He's seeing a neuro psychologist. She's helped him deal with some of the anger, but not all of it. After charting his behavior all summer , my daughter and I believe it has to do with his sodium level... if I can get 8 oz of water in him at 6 am, Michael is a happy camper. But I'm not having much luck getting the message across to the Endo docs. Jan 96, a small bit of tumor was found and Dr. Black turned us over to Dr. Antonio de Salles at UCLA. Radio surgery turned out to be a picnic in the park compared to 8 hours under sedation. And in June, Dr. de Salles declared the tumor 'controlled'. And we talked to him about Mikey's temper and he suggested a ped. neurologist. and it's time for growth hormones... which I won't be able to get into him until the anger is control.. ::sigh:: We have made Mikey's room a 'safe' room for him. He gets locked inside until his rants stop, usually about 20 minutes is all that is needed. I wear dozens of scars from where he has attacked me. Child Protection Services has it noting on our file that any bruises found on Michael were done in self defense. The window glass repair shop loves us. But I am sure that things will get better. When he is feeling good, my son is a loving, gentle soul. And he'll be 15 on Sept 5. ::smiles:: I'm hoping Michael gets a new thirst mechanism for his birthday.
Thanks for letting me tell our story.
Windy, mother of Michael
========================================================================================================
From:David Watts <watto@iinet.net.au>
Jim
Thanks for the welcome, glad to be here and part of the group. Here is a chronology of my life with the pontine glioma. It is also available at my Web site as is a feature I wrote about coping with terminal illness.
Chronology of my brain tumor:
Pontine glioma:
David Watts
43-y-o father of two and journalist
12/93 - blurred vision, slight slurring of speech.
1/94 - family doctor suspects benign tumor, CT scan is clear.
2/94 - MRI shows lesion, neurologist suspects glioma or MS
3/94 - lumbar puncture and evoked potentials test rule out MS. wear eye patch because of double vision, otherwise fine and working 12 hours a day. 4 and
5/ 94 - some weakness and tingling in left arm and leg.6/94 - second opinion from neurologist, yes glioma; neurosurgeon rules out biopsy because he says it could be fatal,says that area of the body is "tiger country". cut working hours and do less stressful work.
7 , 8 and 9/94 - more weakness and slurring of speech.
10/94 - very weak left side, walk with crutch, embarrassed about speech. physician recommends radiotherapy against advice of neurologists. have been having acupuncture and meditating plus chi gong and substantial diet changes since 6/94.
11/94 - MRI shows no discernible change in lesion. barely able to walk, right side starting to weaken and tingle, depressed,muscle wasting.
12/94 and 1/95 - 30 daily sessions of radiotherapy. things seem to get worse. start taking anti-depressants (aropax) and pain killers for tightness in head. unable to close right eye voluntarily. left eye loses some lateral movement, but vision remains clear.
2 and 3/95 - unable to walk, in wheelchair, left arm paralysed, right side of face paralysed. start having reflexology and reiki weekly. physician says only three or four months to live because of risk of pneumonia caused by throat weakness which affects swallowing.
4 and 5/95 - spirits improve, incredible support from friends and parents come across the country to help our little family.
6/95 - small amount of movement returns to left arm and hand.
7/95 - very stable, a little more improvement in left side, feeling stronger and more energetic. turn 41
8/95 - thinking of working from home, family doctor says neurologists surprised at stability.
9/95 - go to AFL grand final in Melbourne. find details of tamoxifen and stereotactic radiosurgery. slight increase in numbness left side of face. start working from home 20-30 hours and 2-3 internet related stories a week. start regular swimming.
10/95 - swimming 300m a session once a week;reflexology, reiki and touch therapy weekly; go to movies every Tuesday; going out more; speech clearer; feel stronger.
11/95 - swimming up to 400m. return to work one day a week. ride electric scooter or gopher, able to go out on own. MRI on 21/11...TUMOR SHRINKS SLIGHTLY .
12/95 - have a great Christmas. put on 5kg with festive food and drink.
1/96 - still stable; working ca 40 hours a week, mostly at home. take much needed and delightful family holiday. lots of swimming plus water aerobics.
2/96 - right side slightly weaker BUT left side stronger. more numbness in left side of face.
3/96 - nothing dramatic. swimming 300m plus 100m "water walking" a week.
4/96 - deterioration more evident in weakening right side and more numbness in left side of face and back of head. For a week or two it was worrying then seemed to stabilise and improve marginally, so that by the end of the month I didn't feel too much worse. I missed swimming for about three weeks and also had no reiki for the whole month. This no doubt contributed to the feelings of weakness. Discovered on the Net that Columbia University is running clinical trials of chemotherapy for people with brainstem gliomas. I e-mailed them, but was not eligible.
5/96 - Seemed to get stronger as the month went on. Face still feeling number on the left. BUT able to walk --- or stagger ---round the house more, mostly with the aid of a frame. Being at full height is a pleasure.
6/96 - Doing a lot more walking - staggering actually - but it keeps my hips and legs strong. Left rear side of the head around the ear is tender and painful at times. Water walking 400m a week. Interviewed on video for palliative care professionals and wrote about the Net's influence on my illness for The Melbourne Age.
7/96 - Bit more numbness in the head, but doing more walking and benefitting by exercising tired old muscles. Wrote My Story for The West Australian which got very positive reaction from throughout WA. Turned 42 which we all know is "themeaning of life".
8/96 - More of the same. Bit stronger and able to walk more. In fact am climbing stairs. . . coming down is the problem and need support.
9/96 - An up and down month. There were times when I felt strong as ever and others when I felt down with more facial numbness and pain in the head. My story was published in The Guardian in London; I started two new columns --on life and TV sport -- for The West Australian and was interviewed by The ABC for the 7.30 Report.
10/96 - Not a great month. Felt generally weaker. Plus I had a terrible dose of the flu,immobilising and scaring me. Fever, loss of left side totally, hardly able to speak or move. I slept for two days then miraculously everything returned to where it had been. Felt better the second half of the month with a strong return to swimming.
11/96 - A better month. Just a slight increase in tingling on the right side of body,and discomfort in the left side of head. Tried to add a column about the WA election, but had too much on to do it justice. Redesigned My Home Page. Christmas is coming . . .looking forward to that.
12/96 - Lovely Christmas again. A little fuzzy in the head at times.
1/97 - Rollicking start to the New Year with lots of parties, a beach holiday and more outings than normal. Feeling good after sluggish start to year. Body seems to have accommodated what change there has been in slowly weakening right hand and leg. Went fishing for the first time in 2 1/2 years . . . as usual no luck.
2/97 - Felt quite strong nearly all month and there was hardly any change physically.
3/97 - A few coughs, colds and congestions made me feel less able than normal and accentuated weaknesses in the face and body.
4/97 - A good month with very little to report. We're about to extend our little house; a project we'd all but shelved after I was diagnosed. But I can see six months ahead now without fear.
5/97 - Not much happening, although on the home front our building extensions grow ever nearer. Lots of looking at taps, toilets, doors etc
6/97 - Wasn't a great month. The slowly creeping numbness on left side of head increased to stage where it was much more noticeable, harder to open mouth,harder to speak, tighter round neck, generally glummer. My body remains strong however.
7/97 - I made my 43rd birthday in good shape. All the little changes of past few months seem to have settled down and/or I have adapted to them. Had a holiday in the wine country of Margaret River and returned home to find extensions to our house going at a great rate. Walking with crutch nearly all the time.
David Watts mailto:watto@iinet.net.au
My Brain and I <http://www.iinet.net.au/~watto/>
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Subject: Profile Date: Wed, 3 Sep 1997 10:15:54 -0400 (EDT) From: <CureALou@aol.com> To: jimkenz@concentric.net
Hi Jim,
Here is a profile of our daughter Kyla:
June 1996- At 19 months old we noticed Kyla's eyes starting to cross, not all of the time, but every now and then. July 1996--eye crossing got worse, so we took her to a doctor who recommended a opthamologist. I research books on eye problems and when I came across the word brain tumor I felt as if I had been hit.
August 1996-- Brought kyla to the opthamologist. He insisted on surgery even though he couldn't explain WHY her eyes were crossing. I asked him if it could be neurological, he said not unless she had other symptoms too. I mentioned that she was walking up on her toes. He said she was walking fine. I refused surgery and left.
During August 1996---Kyla's symptoms worsened, she was choking and drooling too much and she developed a rolling gait. I called for another doctors appointment, which they scheduled for mid September!
Early September 1996-- I couldn't wait for the appointment as my heart told me something was terribly wrong with Kyla. I called in a same day appointment.
September 5 1996-- Kyla had an MRI and they found that she had a pontine glioma. We were told she would die but that raidiation or chemo could extned her life. We took her to Duke childrens where she started chemotherapy.
February 1997--- Chemo took its toll and Kyla's kidneys stopped funtioning properly. After three weeks in the hospital her kidneys started to work again ( Thank GOD!!). The doctors agreed that Kyla couldn't tkae any more chemo, and that raidiation wasn't an option.
March 1997---Kyla started Dr Burzynski's treatment of antineoplastons in Houston Texas. Fuzzy hair appeared on her head.
September 1997--- Kyla's tumor has remained stable and she seems to be doing well. Every day is a gift to us. Were are coming up on the one year anniversary of Kyla's diagnosis. Were planning a move to Texas to be closer to DR.Burzynski's clinic as the FDA requires that we make monthly appearences there. We do all of Kyla's care and treatments at home.
We also have a six year old daughter. Kyla will be three years old November 1st! We have two dogs, two parakeets, two guinea pigs, two dauhgters, and theres the two of us. I guess we could be Noah's Ark!!
Buck and Juliet Freitag
,
I signed up for your brainstem mailing list a few months ago, and I'm in total disbelief on how many children are diagnosed with this terrible brain tumor. I would now like to add my daughter Brandy's bios to your list. Brandy was a very loving and active child. She loved everything. December 5, 1997 I took Brandy to an eye doctor for her double vision she seemed to have acquired in the few days prior to the appointment. They gave her a eye patch to help
with the double vision. He said it was a possible paralyzed optical nerve the number 4th nerve. He wanted to see her 3 weeks later. So I took her again and he said he wanted her to see a neurologist and have a cat scan done. due to insurance problems I ended up taking her to the emergency room at uc davis on January 18, 1997. They did a cat scan and a resisdent read it as being negative. They admitted her anyway to the hospital to do a mri the next day, even though the cat scan thought to be negative. She had so many other symptoms. She was starting to have difficulity in walking, slight hearing loss and slurred speech every once in awhile. And the moring I took her to emergency was the first morning she had vomited when she woke up. The other symptons such as walking, hearing loss, and speech difficulty didn't start appearing until two weeks before she was diagonsed. They did the mri in the morining and that's when my whole world fell apart. The doctors told my husband and myself that the mri revealed a rather large right sided pontine giloma, that extended to the medulla. On T2 the pons shows extension into the right mid-brain. They said that they couldn't do a biospy safely and that the treatment plan would be the same since chemo doesn't affect this type of tumor. Surgery was not an option since it was located in the center of the gray matter of the brain. So they scheduled her for radiation therapy alone, 5400 cGyin 30 daily fractions, and 25 mg 6xdaily of dexamethasone that was to be tapererd during the 6 weeks of radition. After 5 weeks of radiation the onocology doctor took me aside and told me that the radiation so far had not even slowed the growth down. And that Brandy had about 1 month to live. For the next four months we watched our daughter deterioate daily until July 10 1998 at 7:45a.m. when the angels came and took her home. Thank you so much for starting this web site it has helped me so much. And now I think I can be of some help to a few people on the list that are currently going through what we did last year. mary and joe kamm parents to Brandy dx january 1998
died July 10 1998.
