A Diary of Faith's Treatments
Faith was diagnosed Saturday, April 29, 2000 with a diffuse pontine glioma brain tumor. Beginning as early as May 1999 we began to notice symptoms ¾ slight at first, but becoming more pronounced ¾ that would lead us to uncover Faith’s condition.
In the spring of 1999, Faith would occasionally mention that she was experiencing double vision. Our optometrist examined her in May 1999, but no problems were found. The next symptom, which began during the winter of 1999, was a slight waver in one of Faith’s eyes. At odd times, her eyes would seem to become unfocused. But the condition passed almost immediately and we were left to wonder if we had actually seen it or imagined it. In February 2000, Faith’s kindergarten grade teacher indicated that at times Faith seemed to be having trouble seeing clearly. We made a trip to our optometrist that month, but within his area of expertise he could find no problems. Over time the waver in Faith’s eyes occurred more frequently and became more pronounced. Specifically, one eye seemed to have difficulty turning out. We returned to the optometrist again in March; wisely, our optometrist referred us to a pediatric ophthalmologist.
Beginning in September 1999, Faith began to exhibit another symptom: loss of balance. Faith had taken ice skating lessons during the early months of 1999 and done quite well. Now she had tremendous difficulty keeping up with her class; she fell quite often. After a few classes, we stopped taking her. Faith had lost interest in activities before, so we didn’t think too much about it. Around this same time Faith began to stumble occasionally. We were left to wonder if this was really unusual for an active six-year-old. However, as time progressed, Faith lost the ability to run even a few steps without falling down.
In March 2000, we noticed that Faith had begun to drool on the right side of her mouth. It was just a subtle loss of saliva and didn’t cause us any alarm because she was ill with a head cold at that time. The mouth didn’t form a balanced smile during this time either. Faith never did seem to have a perfectly symmetrical smile so this again seemed to be part of her normal facial expression.
Discovery of Tumor
On April 25th, we had our appointment with a pediatric ophthalmologist. It was this doctor’s determination that the underlying cause of Faith’s eye problem was neurological not optical. An appointment was quickly arranged with a pediatric neurologist at New England Medical Center. Faith was examined Friday April 28th and a MRI was done the next morning. On April 29th, at 10:25AM we received the terrible news about the true cause of Faith’s symptoms.
At Duke there is Hope
If the news about Faith’s condition was not bad enough, the most frightening thing was to return home from the hospital with no treatment plan, no hope and no information. Because she had been diagnosed over a weekend, the resources we needed were not available to help us. At that moment, we felt completely abandoned.
We are eternally grateful to my cousin, Paul Goldberg, for rescuing us from the fear and uncertainty that consumed us initially. He instilled in us two precepts that were to guide us for over a year:
Thanks to Paul, things moved very quickly. On Sunday, April 30th, and again on Tuesday, May 2nd, we spoke with Dr. Friedman by phone. On Friday, May 5th, we departed for Durham, NC. We left with only a vague understanding of the treatment that would be provided to Faith or the events that would unfold. But we had confidence that we were taking Faith to the right place.
A Timeline of Faith’s Treatment
May 1999 – April 2000
Faith’s tumor begins to attack, mysterious and undetectable. By the time the tumor is found, Faith is in grave danger. (The date of May 1999 is speculative. No one really knows when the tumor developed.)
April 28, 2000
MRI leads to diagnosis of brain tumor.
Initial Treatment at Duke
Faith undergoes six weeks of radiation therapy, augmented by chemotherapy (CPT-11) in the first two and last two weeks. We see noticeable improvements in her balance and stamina beginning in the fourth week of radiation.
We had expected this period of isolation (two months away from home, work and family) to be difficult. The time spent in Durham was actually a good experience. By staying in an apartment, instead of a hotel, we were able to live comfortably. The weather was lovely. We explored sights in Durham, Chapel Hill and Raleigh. We visited family in Richmond and Chapel Hill periodically. The staff at DUMC was warm and caring. In the midst of a very trying time, we were able to relax. We were able to focus all of our attention on Faith’s needs without any interruptions.
May 5, 2000
Arrive in Durham. We have rented an apartment close to the medical center. Initial meetings with Faith’s oncologist and the support staff of the Duke Brain Tumor Center.
Week of May 8, 2000
Initial meeting with the radiologist. Major events: surgery to install infusaport; radiation "simulation"; creation of Faith’s "mask" for radiation.
May 15 – June 30, 2000
Radiation is delivered for six weeks. By using a process called hyper-fractionation, they are able to deliver a much higher dose. They also concurrently administer chemo during the radiation cycle using CPT-11.
July 1, 2000
Return to Reading.
Chemotherapy at Duke and NEMC
We now begin the struggle to shrink the tumor even more. Faith starts her six-week chemotherapy cycles. Chemo is administered once a week for four weeks; Faith then rests for two weeks. In the first week, two chemos are administered: BCNU and CPT-11. For the next three weeks, only CPT-11 is given. Faith’s blood chemistry is tested twice each week. A MRI is done at the beginning of each six week cycle; if the tumor grows more than a certain percentage, Faith will be taken off protocol (i.e., the BCNU and CPT-11 will have ceased to be effective).
At this time, we begin our association with the Pediatric Hematology/Oncology Department at New England Medical Center (NEMC). They are happy to cooperate with Duke to administer Faith’s weekly chemotherapy and to monitor her condition. NEMC has the most critical role as most of Faith’s medical treatment is received from them.
After a few cycles, it becomes evident that we will see no further reduction in the tumor mass. It now becomes a battle to maintain the reduction resulting from radiation therapy. Our best hope becomes to extend her life long enough for new treatment options to become available.
While there are some bad weeks (usually in the 5th and 6th weeks of each cycle), Faith is able to stand her ground. Finally however, the tumor reasserts itself.
July 31 – August 1, 2000
Return to Duke for 1st follow-up. Clinically Faith is doing very well. Her eyes track normally again. Her balance is stable. She has lots of energy and is enjoying just being a kid again. Her weight is now back to normal. The MRI's indicated that the tumor was reduced in size. If the MRI had indicated a "complete response" (75-100% reduction) the prognosis would be clear. However, we fall in the large category of "partial response" (25-75% reduction); the doctors either cannot say or will not say what this means for Faith's long term prognosis. For the interim we take the good news we have and go forward with that.
September 11-12, 2000
Return to Duke for 2nd follow-up. MRI shows no progression.
November 6-7, 2000
Return to Duke for 3rd follow-up. MRI is subject to interpretation. The radiologists feel that the tumor has grown and spread. Henry Friedman offers a more optimistic view based on Faith’s clinical presentation; he decides to keep her on protocol. After returning to Reading, Faith’s primary oncologist (who was away during our visit) reads the scans and agrees with the radiologists. For several horrible days, we try to reconcile this terrible news with the lively, happy child in our midst. A late night discussion with Henry Friedman brings about the decision to have Faith return to Duke for another MRI to determine if findings from November 6-7 visit truly indicate progression.
November 27-28, 2000
Return to Duke for follow-up MRI. Results are inconclusive. But based on Faith’s clinical presentation, the doctors agree to let her continue on protocol.
January 8-9, 2001
Return to Duke for 4th follow-up. MRI shows no progression.
February 19-20, 2001
Return to Duke for 5th follow-up. MRI shows no progression.
April 2-3, 2001
Return to Duke for 6th follow-up. MRI shows no progression.
April 23 –May 15, 2001
The tumor starts to grow. Faith is slowly starting to lose function: balance and stamina are diminishing. Over a period of several weeks, more symptoms appear. At times she will weep uncontrollably. She has what appears to be a right-side stroke: she loses the use of her right arm and leg. She has what appears to be a small seizure. These are all direct results of tumor growth. Faith is put back on steroids to help reduce swelling of the tumor; however this drug is a double-edged sword causing significant weight gain and weakening her muscles. Faith’s body is starting to fail her. It is the judgement of Faith’s oncologist at New England Medical Center that the tumor has grown. He wants us to be prepared for what we might hear on our upcoming visit to Duke.
May 21-22, 2001
Return to Duke for 7th (and last) follow-up. Today is Eric’s 18th birthday; today we learn that our little girl will not live to see her next birthday. As feared, the MRI shows progression. Not yet wanting to discontinue our relationship with the Brain Tumor Center, we select a new treatment protocol (Thalidomide and Cytoxan) for Faith.
Final Treatments at NEMC
Faith’s condition deteriorates to the point that it is no longer practical to continue our relationship with Duke. Faith is unable to travel. As there are no other innovative treatments available from Duke that might offer some hope, we choose to consolidate all of her care with New England Medical Center. There are no planned MRI’s from this point on as the tumor is so large that Faith’s clinical presentation will be sufficient to mark its progress.
June 7, 2001
After three weeks on her new chemotherapy, Faith’s condition deteriorates. She can no longer walk or support her weight when standing. She is thus confined to a wheelchair. Her speech is slurred to the point that it is almost unintelligible.
June 13, 2001
Faith is put on a new chemo combination by NEMC: Vincristin and VP-16. Faith will receive Vincristin once a week for three weeks at the clinic. We will administer VP-16 at home, once a day for 21 days. Faith will then rest for a week. Then the cycle will resume.
July 17, 2001
Faith spent July 15-17 in the hospital due to constipation. Her doctor has looked at a lot of x-rays before, but he had never seen anything like her KUB. I think this film is destined to become a stable of resident training sessions: "Now THIS is what severe constipation looks like!" You will not be surprised to hear that Faith endured this experience without complaint and even with some humor. The poor child had 4 Fleet enemas, 1 milk of molasses enema and at least a gallon of Golightly pored down her nose (with one of those NG tubes). Even after all this, her colon was not completely cleared. But the amount and frequency of Vincristin has been reduced and we have upped her daily does of Miralax. This issue seems to be resolved.
July 31, 2001
Faith's condition continues to be stable and that she is still very much with us. While she is quite disabled and requires our constant attention, she is completely lucid — capable of laughing and making us laugh. She is continuing to take VP-16 and Vincristin, which must be responsible for this "plateau". Our biggest battle lately has been lack of sleep. For the past six weeks, we have been struggling to find a way to help Faith (and, by extension, us) to sleep through the night. She has been up every two hours -- sometimes more frequently. We have tried Ambien and then Attivan, each without any success. Finally yesterday we were given a prescription for Trazodone -- this worked! We were all in much better spirits today. We are working hard to make sure that Faith is comfortable and happy. We have a wheelchair as well as a special-needs stroller we purchased last summer in Durham. We have a hospital bed. We have friends and family stop by frequently to visit. Luckily Faith is one of those children who can be entertained with games so we spend a lot of time playing Uno, bingo and other games.
August 21, 2001
At Faith's weekly appointment, we were given the bad news that there has been further progression. The chemotherapy that she has been on for the past 8 weeks has ceased to be effective. At this point there are no other viable treatments. Her condition is worsening slowly and we are trying to prepare for whatever lies ahead.
August 29, 2001
Feeding, which has been an issue for the past several weeks, has become more difficult. Faith has slowly been losing the ability to open her mouth enough to take solids. We have responded by cutting food into smaller and smaller pieces. Much of the food does not get swallowed; we pull a lot of pieces out of her mouth. Faith is able to take in yogurt and pudding. However we have had to begin using a baby spoon to get it in. Most of her intake is milk and juice; lately we have added an instant breakfast drink to provide her more calories.
August 30, 2001
For the last ten days, Faith has been getting weaker. She is losing the ability to use her left hand so we must begin to feed her. She is napping and resting more and more. She still enjoys the company of selected visitors. We keep her happy and entertained in the few ways we have left — TV, reading and conversation. Occasionally she is strong enough for a card game.
August 31, 2001
During the morning, we notice that Faith is breathing with difficulty. This problem seems to subside, but returns in the afternoon. We call the nurse at NEMC to report Faith’s condition. We discuss giving Faith an Ativan to help her relax and using oxygen at home.
At 4:15PM, Faith became very pale and the pattern of rapid and strained breathing worsened. At the time she was in bed at home. Faith’s color and breathing and her lack of responsiveness scare us; we call 911.
The paramedics respond very quickly. They ask me in the ambulance if Faith has to be taken to NEMC. They tell me that they don’t think she’ll make it that far because her breathing is so labored. Upon my insistence they agree to head for NEMC with the understanding that they may stop at MGH if she is deemed to be too critical en route. She is stabilized in the ambulance with O2 and two nebulizer treatments.
Once at NEMC, the ER performs many tests and x-rays to try to determine the underlying causes of her respiratory distress. Faith is awake and responsive during the treatments, although extremely weak. She makes no attempt to resist or object to any of the tests. The initial impression of the medical staff and Dr Wolfe is that Faith probably has developed an infection, possibly pneumonia. IV antibiotics are started and she will be admitted for a probable stay of two nights.
Before the admission we are questioned as to the level of intervention we want should there be a crisis. We have a DNR (Do not Resuscitate) order written by the oncologist which we were advised to carry with us whenever we leave the house with Faith. Now we are asked if the DNR includes DNI (Do not Intubate). We ask for an explanation of what that means. We are told that intubation will involve mechanically breathing for Faith to keep her alive. We agree to the DNI.
September 1, 2001
This morning Faith is definitely more stable and comfortable. We feel she is now back to her baseline (the level of health she was at on Thursday.) She is able to sit up in bed, watch some TV and listen to a book. Faith is still weak, but we feel that we are on track to return home in a day or so.
That morning we queried the resident as to whether or not it was possible that the episode we witnessed on Friday at home may have been a minor seizure. She discussed it with Dr. Wolfe and he agreed that it was not out of the question. They decide to start Faith on Dilantin to control any future seizure activity. Dilantin is started by IV drip shortly thereafter.
At 4PM Faith begins to have another episode of strained breathing. She seems to be struggling much more to get a breath. In bed she gasps and struggles for breath. We try to calm her but nothing we do will get the breathing problem to abate. I suddenly notice that Faith is now moving her right arm up towards her shoulder. This is surprising since she has not been able to move that arm since the beginning of June. The resident on duty is called into the room to evaluate Faith, She declares her lungs to be clear but seems uncertain as to what is happening.
Dr. Wolfe arrives shortly thereafter and feels that Faith is having a seizure. It is decided to administer Ativan to calm her. The seizures abate.
We are distressed to find that Faith is no longer able to use her left hand. She also seems unable to nod or shake her head. Our only two ways of communicating with her appear to have been taken away. Faith is very sleepy and alert for only short periods of time. Is she in a coma? Is she responding to us? We have no way of knowing.
September 2, 2001
Today is an emotional roller coaster. We begin the day fearing the worst. We have lost contact with our child. She is alive, but removed from us. We were warned about this type of thing happening, but the reality is terrible.
In the afternoon, Dr. Lauren Kondev from Neurology came to evaluate Faith. Was yesterday’s episode a seizure or the result of tumor progression? The doctor asks Faith if she is willing to be tested. We advise the doctor that Faith is no longer able to respond to us. However the doctor calmly looks at Faith and tells her that she can answer her questions by simply blinking her eyes. To our amazement, Faith blinks. She even appears to giggle at the thought that she can communicate with her eyes. She then goes through the whole battery of neurological tests just like it was a normal clinic visit. She is still lucid! We can still communicate with her! She isn’t gone. She is weak but still has some muscle control left. We still have our little girl. Hope returns to us. Our hearts swell. We cry tears of happiness.
Our whole world has been reduced to the blinking of Faith’s eyes during her brief moments of wakefulness. And yet that is sufficient. Dr. Wolfe has a succinct definition for lucidity: the ability to receive love and return love. The blinking of her eyes — that is enough love for us. We realize now how completely awful it will be to lose Faith for real.
Over the next two days Faith begins to regain some control of her head and her all-important left thumb (thumbs up/ thumbs down). She is weak and alert only for short periods, and is clearly at a lower baseline that the previous Thursday. But she is peaceful, pain free and otherwise healthy. A MRI reveals that she is in no imminent danger of demise.
Over the next few days, Faith begins to regain her strength and is alert for longer periods. She is still weak but she can now watch TV and listen to stories.
September 9, 2001
Faith was released from the hospital today, after a stay of nine days. Her condition is certainly different than ten days ago. She is now completely bed-ridden. All food and medicine is administered through a NG (nasal-gastric) tube. As she cannot use the commode, she must wear diapers. Her left arm is no longer working; none of her limbs is under her control. Her only way of communicating with us is by blinking her eyes.
September 13, 2001
Faith is losing control of her eyes. From time to time, they flutter uncontrollably. She cannot always blink her eyes in response to our questions. The nurse at NEMC indicates that this is a sign of further tumor progression.
September 21, 2001
For the past week, Faith’s condition has been declining, though very slowly. She is still lucid and able to communicate with us by blinking her eyes. But she does not always seem to respond to our questions. We read to her constantly. But she does not always seem interested in what is going on around her.
Today, at 1:45PM, Faith’s breathing became very rapid and shallow; her temperature was 101 (rectal). We began to give her oxygen, but this did not seem to help. After discussions with NEMC, we decided to bring her into the hospital. Faith’s breathing steadied within an hour of reaching the hospital and she slept peacefully throughout the evening and night.
Was this episode the result of an infection (a serious issue for a child in Faith’s condition), an aspiration of saliva or another random fluctuation in the tumor? Whatever the cause, she is now far less responsive than she has been. She is wakeful for only short periods of time and does not respond to our questions. Does she understand us? Has she simply lost the ability to blink her eyes? This is very difficult to take, but not entirely unexpected.
This hospital admission will last until October 10th. She stares blankly into space. She can no longer show any reaction or response to any verbal stimulus from us. We wonder if she recognizes and understands us or has she lost all mental connection with her environment. Has she lost her past memories? We’ll never know. We can still talk to her, hug her and kiss her. Her physical presence is all we have left, but that is enough for us.
October 12, 2001
We were home just under 48 hours when Faith started vomiting. She is on a continuous feed at a low rate. She vomits at 3:30, 5:30 and 7:30am on Friday October 12, we closely watch her all day and stay in contact with the staff at NEMC. At 2:30pm she vomits again and at that point we decide to call the hospital and arrange for an admission as we do not feel comfortable having her at home over night.
This admission is one week. During that time she is very lethargic and does not seem able to focus on us with her eyes or even follow simple commands to move her eyes.
October 29, 2001
Faith is still among us...but not really with us. Several weeks ago, she lapsed into a state where she is unaware of what is going on around her. We care for her and give her our love; but she is not able to interact with us or return that love. It breaks my heart. And so we wait for the inevitable. It could be days, weeks, even months -- no one is sure. That is pretty awful too. But Faith is comfortable, pain-free and stable. Best of all, we are here at home. Between August 31 and October 18, Faith was in the hospital 3 times for a total of 36 days. So we make the best of what we have. Today is Faith's 8th birthday, a point I never thought we would reach. Also, it is exactly 18 months post-diagnosis. Of the 200-300 kids diagnosed with this tumor each year, only 20 or 30 make it this long.
November 2, 2001
Faith seems to be quite comfortable at this point. She sleeps well through the night and is tolerating meds and feeds. Nana comes over every day and reads extensively to Faith.
December 7, 2001
Over the past 2 weeks, Faith has become less and less alert. She sleeps almost constantly. When her eyes do open, they do not seem to be able to focus. She does not seem to be in any pain, but she does not seem happy.
Twice this week she has had episodes of rapid breathing and high heart rate, but these conditions have resolved on their own within two hours. Yesterday, the 6th, at 4PM, another more violent episode began. After three hours, we contact the doctor for advice. At her direction we give Faith elixir of morphine, however this does not help. At 10PM we consult with the doctor again and decide to bring Faith into the hospital.
Throughout the day, the doctors work to get Faith stabilized. The goal is to reduce any discomfort and anxiety she is feeling. By late afternoon, through the use of Versed and a narcotic, this is largely accomplished. However Faith's heart is still racing.
At 9:30PM, we are sitting anxiously, watching Faith and wondering how much longer this will go on. At the same time, the residents and nurses on duty are at nurses' station watching Faith's vital signs on their monitor. They see something that alarms them. A resident knocks on our door and alerts us that Faith's heart is starting to fail, though she cannot say how much longer things will last. An hour later, Faith peacefully and all too suddenly slips away. The senior resident quickly appears and puts her stethoscope to Faith's chest. At 10:35PM, the resident makes the simple statement, "She's gone."
Eric, Marilyn and I remain with Faith for another two hours. It is hard to talk and even more difficult to leave. Before we go, Marilyn and I examine Faith closely. In the bright fluorescent lights of the hospital room, we see clearly the many ravages to her body. Her legs have lost all muscle mass; there are wide ugly stretch marks on her abdomen, legs and shoulders; there are small blood blisters on her arms and chest. Her hair has only partly grown back in; there is very little hair on the back of her head and what is on top of her head has grown in dark brown instead of her natural blond. But her skin is still soft. And her face, although puffy from taking high volumes of steroids, is otherwise unaffected. She is still beautiful. That is the image we take with us as we go home.