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Simon's Story History
(Pre-Diagnosis)
As with many children with DIPG, Simon's first obvious symptom was that his eyes were at times cross-eyed. In what turned out to be lucky; there are very few pediatric optometrists so we ended up making two appointments. At the first, the cross-eyed appeared to be normal and patching was recommended by the first optometrist.
After a few weeks though, Simon's left eye became permanently stuck right next to his nose. Fortunately, we still had the second appointment with the other pediatric optometrist on December 22nd that we had not cancelled. At the time, the optometrist knew it was serious because he could not get any movement from Simon's left eye and recommended that we get an MRI ASAP. This was scheduled for December 26th.
Christmas Day turns out to be the last day prior to our lives changing dramatically. Simon and Ethan had a great day and Susanna and I were waiting patiently for the twins to come.
December 26th, 2006 (Diagnosis Day)
Of course, as Susanna and I write this 8 months later, the facts of the situation may not be entirely correct, but here is how we remember it. The MRI was early in the morning and Simon was going to be sedated. Another child had an emergency (never knew what it was) that morning so we waited a few hours before Simon's MRI began. At this hospital, they did not allow the parents to be in the room, so we sat in the waiting area ... mostly talking about the twins birth (Susanna was having some contractions and false starts).
While we were waiting, a nurse called us and asked for our pediatrician's name. Later we realized that at that point they had already diagnosed a problem. They called us into the recovery room where Simon was waking from the sedation and told us basically that Simon needed additional time to recover. In reality at this point the pediatric oncologist was called and was on his way over. The blur of the next few hours and days of course is not clear. The doctor and a social worker described that Simon had brain cancer and though they never gave us the odds --- their faces explained that the situation was bad. I remember the doctor explaining that comfort care may be necessary. They immediately recommended we meet with the radiologist. So we went from the Recovery Room to the radiologist. Susanna remembers this being a very long walk, with a groggy Simon who needed to be carried and Susanna stopping frequently due to contractions. When we went into the Radiology waiting room, the only other people in the room were senior citizens fighting various cancers. Definitely not a child friendly atmosphere.
Susanna and I asked that they write down information, as we knew we were going to go home and do research. At the time they only called it a Brain Stem Glioma -- which of course wasn't sufficient as it turned out to be the worst kind of many types.
Susanna, Simon and I made it home in the late afternoon. Simon was still groggy from the earlier sedation. Susanna and I were in shock and trying to look on the Internet for Brain Stem Glioma. Susanna's mom was already there for Christmas.
Susanna told her mom and I called my parents -- my dad answered and I broke down in tears when I told him - I wasn't even able to speak to my Mom. We were shocked and weren't sure how long Simon would live though we thought perhaps only weeks. I became most emotional when I thought about Ethan and how he would lose his best friend and brother.
December 27th, 2006
As our families are notified and shocked ... I will just pass on an e-mail that Susanna and I sent to my aunts and uncles.
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Mary, Sally, Peter and Joe, (and my parents who I have spoken to more regularly)
Thanks so much for the kind words and offers for help -- Susanna and I are deeply moved by them and may call on you. Currently, Lillian (Susanna's Mom) is here and my mom will be coming out this weekend for at least a week and maybe two.
Though we do believe we have quality doctors in Charlotte, due to the rare nature -- we have had an introduction to the Duke University hospital who have some leading specialists. There are some other sites (in Memphis, Tenn for one as Sally Mentioned). Dr. Tim Johnson (you met him at our wedding and the ABC guy) had his team do the research who picked the doctor and who Tim called personally. We spoke to him today and have been speaking to Tim who although is not an oncologist has an excellent physician network and research team.
The Doctor at Duke (Dr Henry Freidman) will be reviewing Simon's MRI and at least we will have a second opinion. Our hypothesis is the diagnosis will be the same as well as the initial treatment approach -- however -- the question is really where should we go for treatment. The radiation treatment right now is scheduled for next Tuesday.
Simon, by the way, is doing very well and outside of his eye problem he appears and acts quite normal and happy. This is an enormous blessing and we appreciate it greatly. We actually today discovered that a patch makes him more comfortable as (you can imagine), trying to see straight when your eye is next to your nose is very difficult though actually eyesight in both eyes is quite good. Additionally, Simon has been quite comfortable with the doctors and radiation discussions, he was excited to be able to move the radiation machines (the size of half the room) around when they gave him the remote control.
At last over the past 36 hours have been enormously emotional and tough, Susanna and I going to continue to be positive and today was better than yesterday. A great help for this has been the positive support of our friends and family.
On the twins front, the babies are very healthy and good weight and if not born naturally in the next 24 hours, we will induce (and possible C-section by the end of this week. The boys really can't wait and we are looking forward to the new additions.
**********************December 28th, 2006
After consultation with Susanna's doctor, we agreed to have a scheduled C-section that day to give birth to the twins. Susanna had many false starts and her doctor had some concern that one baby (Charlie) was not getting enough food based on the difference in projected birth weight of the twins.
Seeking a second opinion on Simon, we had Fed-Exed the MRI results to Dr. Friedman - head of the Brain Cancer Institute at Duke and we were also waiting to hear from them. Before leaving for the scheduled C-section, we played with Ethan and Simon racing their Christmas Toys (Mater and Lightning McQueen from the Cars movie) -- we were manic, crazy trying to get every moment with Simon to make him happy.
Susanna's mom called us at the hospital telling us that Dr. Friedman had called. My hand shook as I returned his call which turned out to be his pager. When he called back, we were 30 minutes away from going into the operating room for the C-Section and I was dressed in scrubs and Susanna laying in a hospital bed. He was a direct, no-nonsense guy -- he confirmed the diagnosis but said that the current treatment does not work, Duke had clinical trials and wanted to get Simon into the trial.
While Susanna stayed at the hospital, I went home to bring Simon and Ethan to see the twins. We took video and many pictures like the one above of Simon holding one of the twins. How would the twins remember Simon if we don't record this time for them?
The stress of picking the treatment was very high. Although Dr. Friedman had suggested that we go to Duke, acceptance into the clinical trial was not guaranteed and we needed to meet with the Pediatric Brain Tumor doctors at Duke. Due to the holidays, the doctors were not available; so we waited anxiously after the new year to go to Duke. We were terrified because we hadn't starting treatment yet; but knew if we began treatment anywhere that we would not be allowed to join the trial.
My Aunt Sally flew up from Panama. She is a retired biologist and so we asked her to come along on the visit to Duke. The Duke doctors and nurses explained the trial but also noted that Simon would be first one at Duke to be in the Trial --- Duke had 5 spots open with the other Children's hospitals sharing the other 30 spots. Additionally, who knew if the trial would work ... and success was described mostly as just a short extension of life. Joining the trial also meant that Simon had to endure more treatment than just the radiation; furthermore, some of these procedures were primarily to help the researchers but provided no direct benefit to Simon. The decision to join the trial was difficult because if Simon had only a few months to live, did we really want to subject him to the additional treatment?
The first visit to Duke was simply an introduction to multiple doctors and a discussion of the clinical trial. As Sally, Simon and I drove home (130 miles away from Duke), Susanna was visiting the doctor to check out the twins (Charlie and Sophia) who were now only a week old. My mother was with Susanna assisting with the twins. Sophia was jaundiced and needed to be hospitalized to go under the Bililights. Susanna was stunned, but the doctor said she could stay in a maternity room as well as Charlie. Susanna exhausted relented. Susanna's two neighbors went to keep her and the twins company as Simon and I did not get back to our home until 7:00 p.m.
After reviewing the clinical trial, Susanna and I decided to accept the trial. However, before Simon was finally accepted and could begin treatment, the trial required that Simon have another MRI, a PET scan, physicals, blood test, and an almost forgotten urine test. All together, this was nearly 3 days of tests with many needles and sedation. This continued to stress the family as this would delay the beginning of the treatment another week and also required a lot of Simon.
For the three days of tests, Simon and I made a 2 hour drive to Duke and a 2 hour drive back every day while Susanna and family members cared for the twins. We decided against a hotel as we wanted Simon home with his brother and with his friends. As a three year old, Simon did very well but became very scared of the needles for the IV's. Due to his small veins, the nurses had a trouble inserting the IVs and attempted it multiple times. Simon soon became scared of anybody in a white coat. On the third day of test, we only had to complete a PET scan and we were heading home around lunch. Similar to an MRI, Simon was not allowed any food or drink all morning, Simon was ready to go home and I promised him we would go home right after the tests. Five minutes before the PET scan was to begin, a nurse told us that the clinical trial also needed a urine sample. Simon then tried to go prior to the tests but could not given his lack of water all day. I was extremely frustrated given that we had been there three days and not until the last minute did they tell us they needed a urine sample. (note: as Simon was the first one in the trial, this was an honest oversight) We went ahead and completed the PET scan which took about 20 minutes.
I asked Simon to try again for the urine -- he refused - and said it was time to go home like I promised. I broke down because on one hand the trial required it and perhaps they wouldn't begin treatment that we had now waited three weeks to begin, but I had promised Simon and I was also exhausted from the driving and the twins also. The PET Scan doctor knew I was upset and told me to go home. As I left, I told her to tell the Clinical Trial nurse that I would fed-ex a sample back.
When we got home, Simon could actually go, so I had him go in the sample -- I then wrapped it very carefully in multiple plastic bags and then overnight Fed-EX to Duke though I was not sure how legal it was to FED-EX urine even if well packaged.. The nurse called me the next day to say the sample was fine, and I had recovered from a near nervous breakdown.
The relief of starting treatment was huge. Here is an e-mail I sent at the beginning of the treatment.
E-mail sent on January 14th, 2007
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Family and Friends,
Thanks again for everyone's continued support and as most people seemed to appreciate the last update from us -- we are passing on the latest news. This week my mom and Aunt Sally went home to their respective homes and Susanna's sister Rachel and her husband Eric have now joined us in North Carolina.
We have finally nailed down the treatment plan for Simon. Simon has been accepted in the clinical trial (after three days of tests) and we will be receiving our care from Duke's University Hospital. The clinical trial is a nationwide trial that includes multiple other research hospitals (i.e. St. Jude) and is in Phase II. The Simon is actually the first subject at Duke for the Phase II trial and most likely is the youngest subject in the trial. Nationwide, they are planning to have about 34 other subjects participate. The treatment is a combination of 6 weeks of radiation therapy (which is the standard therapy) plus a pre-FDA approved drug called Zarnestra which makes up the Chemotherapy portion (and the trial portion) of his treatment. If you want to do your own research on the trial is is called "Phase II of R115777 and XRT in Pediatric Patients with Newly Diagnosed Non-Disseminated Intrinsic Diffuse Brainstem Gliomas".
The positive news about Simon's acceptance means that except for the Brian Glioma - Simon is an otherwise very healthy young boy. Additionally, the Glioma has not yet reached a stage that is untreatable. The trial drug has already been given to us and we begin treatment Monday and the first radiation treatment is Tuesday. Susanna and I are relieved to begin treatment and grateful actually to get through the initial stress of getting second opinions, understanding the condition, determining the treatment options and selecting a treatment plan. Additionally, we are through (mostly) the emotional notification of Simon's condition to our family, friends, schools, pre-school, neighbors, and work colleagues. We hope to get back to a more normal schedule and have a goal that Simon returns to preschool after a successful radiation treatment.
One piece of hope that I received from reading the clinical trial paperwork is that even today with just radiation treatment, there is a 10% survival rate for children with this condition. While still certainly scary, Susanna and I take hope that there is a real chance for survival and actually much higher than what we had originally understood. We realize that there is still a long journey ahead for us, but (just like life) the outcome is not predetermined.
Simon continues to do very well and acts very much like any other 3 year old. He is getting use to the doctors though admittedly after a little too much poking with needles has become a little bit wary of anyone in a white coat. Overall, though I believe we are receiving excellent care at Duke and due to the highly emotional nature of pediatric cancer, I really believe that only the best of the best work in this field.
Thanks for all of your support.
Jeff and Susanna
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Three year olds are incredible resistant and accept change much better than adults. Simon soon adapted to the daily radiation treatment almost immediately. We got into a very good routine, where we left each morning about 7:00 A.M., drove to Duke, completed the radiation and came home. Simon had to meet with the doctor's twice a week, but often, we were home by lunch.
Simon loved the adventure of the hospital. Part of our routine would be that we went up and down the escalators prior to his treatment. He loved the escalators and pushing the buttons for the elevators. Duke's radiation room also had a small family room with crayons and other small toys. Simon and I bought some Legos and would often play with the Legos prior to treatment.
All the doctors, radiologist and waiting room patients knew Simon, Simon would always race down the hall into the radiation room. (How many adults would ever run into a radiation room?). After a while, the nurses/technicians would race with Simon into the room and everybody would watch and clap as Simon always just barely won the race. A friend of Susanna's had given Simon a stuffed black dog that he would always hold onto during radiation. Simon became good friends with his nurses/technicians --- one of which - Robyn -- gave him a Thomas the Tank engine toy on his birthday.
After the radiation was completed - usually less than 10 minutes - the technicians would allow Simon to move the 'Big Machine' and the 'patient table' with the remote control. Simon would eagerly look forward to that each day.
In the waiting room, a women who was supporting her friend would bring in fruit and gave Simon a banana one day that Simon ate. The women then would always bring a banana for Simon and many times even left one there for him with a note.
Here is an e-mail that I sent to friends and family about the treatment.
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E-mail sent on January 28th, 2007
Friends and Family,
Susanna and I thought it would be another good time for an update on Simon. We have just finished two weeks of the radiation and chemotherapy with four weeks left to go on the Radiation Therapy. Simon is handing both very well and has had almost no side effects (which is great). We think that Simon's overall mood and energy level has also improved, though we admit this might be wishful thinking. I took Ethan and Simon swimming both Saturday and Sunday and they played outside for a long time. Although of course we do not know whether the tumor has decreased in size, we are pleased that the treatment is going well and the side effects appear minimal (so far).
The treatment at Duke usually goes very fast. On most days, Simon and I leave about 6:30 A.M. and we can get back home around lunch time. Additionally, because we can do the round trip plus treatment in about a half a day, Susanna will be able to go to some of the treatments while our family watches the twins. Susanna and Ethan went to one treatment already and Simon was pleased with the additional company. Also, Simon has handled the car rides very well --- our neighbors have helped out with this by "breaking into our car" nightly and leaving a simple surprise for Simon each morning -- a balloon, an airplane, and even a harmonica to name a few.
Simon has a tremendous effect on the waiting room for the radiation therapy which of course is full of worried and serious people (e.g. a middle-age woman with breast cancer and her close friend, a 20 year-old man with his sister, and others) with various forms of cancer. Everyone seems to recognize Simon -- they smile and wave to Simon and enjoy watching him play
in the children's room. When it is Simon's turn for his treatment, Simon and I race down the halls to the treatment center (with a nurse yelling after us to be careful and watch out for other patients) and usually pass a young girl (about 8) who is also receiving treatment and has a small stuffed dog named 'bones' with her. The girl - bald from her own treatment - smiles and laughs as Simon and I race past her into the treatment room.
Finally, we have received many awe-inspiring e-mails and letters from friends and families --- and even from strangers (to us) who are friends of our extended family. Letters include those who have recently beaten colon cancer, someone who talked about her sister who had a serious disability when she came home from the hospital after birth, and people who have dealt with childhood brain cancer and other childhood issues. Let me say in a whisper, they are beautiful.
- JA***************************
Simon's treatment was going very well and we were counting down the days to both his birthday and the end of the treatment. His eye was already improving as well as his overall mood and dexterity. Susanna and I realized that Simon had other symptoms that were less obvious but now that we saw the improvement, we recognized the symptoms in hindsight.
Our neighbors called the local volunteer fire department and arranged/begged that they come and see Simon on his birthday. One of the amazing things that people did for Simon.
At the end of the treatment, I sent the following e-mail out to friends and family.
E-mail sent on February 25th, 2007
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Friends and Family,
Susanna and I know that it has been about a month since our last update and as we originally mentioned we apologize that we are unable to keep everyone as informed as we would like, but for multiple reasons (below) we think it is appropriate to send an update.
First, Susanna and I are very proud that on Friday Simon completed his last radiation treatment and took his last dose of chemotherapy for his original treatment. In all aspects, Simon handled his therapy wonderfully --- taking medication every morning and night, driving over 7,500 miles to/from the radiation therapy, and completing all of his radiation therapies without sedation (i.e. he literally was able to keep himself still as radiation is sent through his head into the tumor--- most children are sedated).
Furthermore, Simon has already seen benefits from the treatment as his eye now has much more movement (though not 100% movement) and his overall mood, energy level and speech is much improved. The doctors have told us that most patients continue to see improvements over the next few months and we are hopeful.
Now, our family is entering a different stage in Simon's battle. In most cases of diffuse pontine gliomas, the radiation treatment works well for 3 to 4 months, but then the tumor usually returns in the months following this 'honeymoon' period. We hope that the chemotherapy portion (which is the clinical trial portion) will help prevent the return. The doctors will closely monitor Simon through MRI's (and other tests) approximately every 2 months checking to see if the tumor begins to grow again. Outside of some chemotherapy via pills, Simon will have minimal treatment during this 'waiting period'.
So what do we do now? First, we will continue to hope and pray that the tumor will not return. However, Susanna and I are also going to begin to live a 'normal life' again with Simon returning to preschool on March 1 and I returning to work next week (after about a 10 week break if you count the holidays) too. We will hope for the best, but prepare for a possible return of the tumor.
Thanks again for all of the fantastic support and help over the past 2 months. It is hard to believe that it was only 2 months ago that Simon was diagnosed. We have received fantastic support from all sources including family that have helped with the twins continuously since their birth, my company, Diamond, which has been very generous and supportive, friends who have done numerous/amazing little things, and complete strangers who have sent words of hope, gifts for Simon and gifts for the family.
Finally, Simon had his 4th birthday on Thursday --- one day before his last treatment --- so all-in-all a very emotional but fulfilling week for the family.I wanted to pass on one item from his birthday. Through a neighbor's relative's neighbor -- our town fire department heard about Simon so on his birthday at 4:15, four firefighters drove a fire truck to our house to surprise Simon. The firefighters did all sorts of fantastic things (raised the ladder 100 ft into the sky moved it over to Simon's window) and even gave Simon (and his daddy) a ride in the fire truck around the neighborhood. All of the neighborhood kids (just home from school) all came out to watch. It was incredible. I have attached one picture from that day.
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August 26th, 2007 - 8 Months after Diagnosis
On Monday, Susanna, Simon and I will go to get the results from Simon's latest MRI. We are hopeful because Simon is doing so well and appears and acts like a normal 4 year old boy. Today, Ethan and Simon went and played with our good friends and neighbors Corey and Christian. Yesterday, Simon and Ethan went swimming at their good friend - Jordin's (6 year old girl) pool
While the treatment has gone very well, at this point we still do not know if the clinical trial drug has actually helped. Many patients respond well to the treatment, but now we are just getting near the edge of positive results that is associated with radiation (6 to 9 months post radiation). We are very grateful though that Simon has had such a high quality of life that past few months and every milestone (school starting) is an emotional one.To be honest, Susanna and I took a break from reading about other children with DIPG as it was emotionally draining for us. However, last night we read about Elena who was also initially in the clinical trial. We had corresponded with her parents and we shed a few tears for them last night. Another family that was also on the trial has stopped taking the drug, so now Lindsay who just started treatment is now the only other family that we know who is in the trial.
Sept 1, 2007 - 8+ Months after Diagnosis
Susanna, Simon and I went down for the MRI results and were please to hear that the tumor was stable. Each time that it is stable, we realize that Simon probably has at least a few more months of high quality of life, and maybe/just possible with a lot of luck, perhaps the tumor may not come back.
Since Simon had the MRI on the previous Friday, the nurse had already drawn the blood sample to ensure that the drug Zarnestra was not causing damage to the liver. On the drive to Duke, Simon asked if he was getting any 'shots' on Monday. He calls giving the blood samples 'shots'. I told him no because they had already gotten them on Friday. When we get to the Children's center, the nurses said hi to Simon and Simon promptly yelled "I don't need any shots today!" and proceeded to tell everyone he met the same thing as we went through the usual routine of getting weighed, checking blood pressure and having Simon go through a physical.
As Simon continues to do well, Susanna and I appreciate the good friends that Ethan and Simon continue to be. They share a room and although they have their own beds, we will often find Simon asleep at the feet of Ethan's bed and will stay there all night until morning.
Sept 9, 2007 - 8+ Months after Diagnosis
Today, the whole family got up and out of the house by 7:00 A.M. (pretty amazing for a Saturday) to join in the Family Fun Run to support Tyler's Tree House. Tyler's family started the charity to raise funds for DIPG research after Tyler passed away. At the race we met Tyler's mom (Dana) and dad (Howard) as well as two of Tyler's older brothers. They knew about Simon and were very kind. They conducted a great event and it seemed like at least 300 people were in attendance. After the run, Ethan (Simon's older brother) said running was funner than he thought. Ethan was determined to run the mile long course, with Jeff in hot pursuit. Susanna ended up carrying Simon (not due to the tumor -- just a tired 4 year old) while a friend pushed the twins.
Before Simon's eye troubles began due to the tumor, Simon really enjoyed going to the driving range and going 'darfing' (i.e. golfing). Twice this weekend, he went to the driving range with his dad (at Simon's request) and hit the ball well. His coordination has always been good and we are glad that most of it seems to have returned. Here are some action photos of Simon's golf swing.
Simon returned to preschool this week. He was eager to go since Ethan started 1st grade last week. Here is a picture Susanna took of Simon leaving the house to head to school. As you can see he is very excited to return and see his friends. One of his beloved animals (creatively named Cow) accompanied him for naptime.
October 13, 2007 - Simon Passes Away
At around 1:50 P.M EST, Simon took his last breath with Susanna and I holding his hands. He left peacefully with a long sleep that started about 1:00 A.M. EST. Simon was assisted in his journey by the fine doctors and nurses at Charlotte Presbyterian Hospital. Simon -- who had had a high quality of life for 9 months after diagnosis - had a quick turn of events this week that led to this day. Although deeply saddened by the loss of Simon and the effect of that loss on our other children, Susanna and I were relieved that Simon did not suffer long and was able to pass away in dignity, in peace, and with this parents.
Additionally, Simon was able to see his whole family for dinner the night before. Although we did not know that Simon would pass the next day, it was a chance for Ethan to say goodbye and the family to be together (although in Simon's hospital room) for one last time
One of the last things that Simon asked (in a voice hoarse from the two radiation treatments) was for his stuffed animals (Webkin, Piggy Piggy, and Minerva). I handed them over and they also guided Simon in his passing.
The week leading up to Simon's Passing
Monday October 8, 2007 - Unplanned MRI scheduled for Tuesday
Susanna and I had requested our planned MRI to be moved to this week due to worsening symptoms including Simon walking with an extremely hunched back that would draw stares from people in the grocery store. Simon was not always complaining of pain, but clearly was compensating for some pain that prevented him from straightening his back. At night, Simon was having trouble sleeping, sometimes complaining of leg and belly pain during the previous week.
Duke responded that they could get Simon in 8:00 A.M. on Tuesday. Although I had already flown to Hartford, Connecticut Monday morning, Susanna and I decided to conduct the MRI on Tuesday so I flew back from Connecticut that night.
Tuesday October 9, 2007 - MRI Results
After the MRI of both his back and his brain, the Duke Doctors called me on my cell phone and asked to speak with us immediately. Usually, we do not get the MRI results until the next day, so as expected I imagined the news was bad. Susanna and I had hopes that perhaps the back problem was related to muscles or perhaps a broken bone, but deep in our hearts I think we knew that would be too much a coincidence.
The tumor has spread to Simon's spine. Furthermore, the tumor was large in one spot near his neck and was completely covering his spine from neck to the bottom of the spine. The prognosis was terminal cancer but they thought that radiation treatment on the spine would ease Simon's comfort. The Pontine portion of the tumor also showed signs of activity and re-growth, but basically was of secondary concern now than the spinal growth.
Wednesday October 10, 2007 -- Radiation Therapy Options and last park visit
We went back to Duke the next day to discuss options for radiation therapy. They helped arrange for the therapy to occur back in Charlotte, making it easier on Simon and ensuring that he will be close to home. More importantly, many of the people who conducted the radiation therapy came by to say good-bye to Simon. Robyn who raced Simon every day into the radiation room also came by. Simon and Robyn had one last race. We were very grateful to Robyn as well as the other staff.
When we got home, the sun was shinning and his friends were outside. Our whole family went to the park, Simon's friends Cory, Christian, Jordin and Blaine were also at the park. Ethan did his usually monkey bars and climbed the bars supporting the swings. Our neighbor Julie, Susanna and I took turns pushing Simon on the swing and the babies waited patiently nearby in the stroller.
Simon and I walked back and there were a bunch of birds chirping. He sat on his motorcycle and we listened to the birds for a long time. We couldn't actually even see the birds they were so well hidden in the bushes. Simon was very happy and content.
Thursday October 11, 2007
Our appointment was at 6:45 A.M. in the morning at Charlotte Presbyterian. We were relieved that we didn't have to drive 2 hours to Duke, but still had to get everyone up at about 5:30 to make the appointment. Simon walked for the last time that morning in and out of the car and into the radiation therapy center.
We had not spoken to the doctors at Charlotte since Simon's original diagnosis. We gave them the files and our copies of the MRIs from Duke. Due to the pain that Simon had while laying on his back, they had to sedate Simon, so that they could calibrate the machine for the radiation and then to actually perform the first radiation. Additionally, we decided to insert a "PIC" into Simon's arm so that he would not longer need any shots, all medicine and blood could be drawn from this semi-permanent access to his blood stream.
The complete procedure took until about 10:00 and they had me join Simon in the recovery room until about 11:00. I didn't realize the pain that he was in immediately. I think in hindsight, the radiation had inflamed the spine and the tumor increasing his previous discomfort. Looking back, I realize I was naive to what radiation to the spine really meant particularly as the original radiation back in January went so smoothly and resulted in really no discomfort to Simon.
Once the doctor's OK'd us to leave, I thought as normal I would just carry Simon to the car. However, this was causing Simon pain. He begged for a wheelchair before we could leave the hospital. Eventually, an elderly women was leaving with a wheelchair and we were able to use it. I was pained (and others witnessed) as Simon begged for the wheelchair. An uninformed observer may have thought that this was just a spoiled child who wanted a ride, but for us was the beginning of a painful day for Simon.
Simon hurt as I put him into the car seat and when we arrived home. Simon would not leave the car seat as he knew it would cause him pain. I proceeded to unbuckle the car seat and just carried the car seat (with Simon in it) into our house and unto the couch. I asked Simon if he would like to watch a video and we proceed to watch Toy Story. I thought that Simon was doing much better, he also ate and the site of Susanna seemed to calm Simon down. However, it was too much pain to walk or be carried and when he had to go to the bathroom, we tried to carry him to the potty -- this caused Simon pain. We then called the doctor's office to get a pain prescription that Susanna got and we started around 4:00. For dinner, we had Simon's favorite meal -- spaghetti and meatballs. Simon got to eat on the coach as he seemed most comfortable there and we didn't want to move him. He ate well and again we thought Simon was doing better. We even got him up to his bed and the plan was for me to sleep next to him in Ethan's bunk with Ethan sleeping in our guest room.
However, Simon could not sleep and Susanna and I took turns watching him, and giving him more pain medicine. His legs began to shake and he could not keep them still. We thought perhaps he was having a reaction to the drug --- most likely this was an effect of a now inflamed tumor in his spine. (Not sure what time) -- but then Susanna and I decided to take him to the emergency room. I would drive him down to Charlotte as that was the location of our doctors. Simon did not want to go, because he was pained when we carried him. Again, I brought his car seat to his room, placed him in his seat, and then carried him to the car. I also packed his back-pack and headed down to Charlotte sometime after midnight.
As I drove, Simon was in more pain and I was losing it going almost 90 MPH. I had a phone in my hand to call 911 if the police tried to pull me over. I was only going to stop at the emergency room. Fortunately, we arrived to the entrance safely, I parked right in front and carried Simon again in his car seat. He was in a lot of pain at this point. When I got to the front desk, I cried out through a lot of tears "My son has terminal cancer and is in a lot of pain". I have never seen an emergency room help so fast, they took him right back did the basic blood pressure and physical. The nurse called the doctor and referred to it as "Priority 2 Pain Emergency"
The "PIC" came in handy as they soon gave him some morphine through the PIC. Simon immediately looked better and interacted with me and the nurse. He even learned to push saline through his "PIC". Since we had a radiation scheduled in the morning, they just checked us into the children's ward. I was pleased by that and Simon seemed much happier, out of pain, rested and I thought that we could probably continue the treatment. We did understand that often radiation makes things worse than better and perhaps we could also now begin to use steroids to control the swelling in the spine.
Friday October 12, 2007
The day started a little rocky as their was miscommunication with the radiation therapy. They actually called my cell, asking where I was while in fact we had been in the hospital for 6-7 hours. They soon then came by to pick up Simon. Simon also had not urinated in a few hours and appeared like he had to. He kept trying, but we knew that he would need a catheter. Again, I had hope that this was temporary as the spine was inflamed and perhaps with some steroids and radiation therapy on the spine swelling would shrink. The radiation treatment today went very well. Additionally, the catheter relieved Simon. Everyone commented on how much urine was released. I was also hopeful that we had eased his pain (which it did), but not to the extent that I had hoped.
In recovery, Simon was not able to move his legs. Because we were staying in the children's wing, they allowed Simon to finish his recovery in his room. Susanna joined us there and Simon did pretty well in the afternoon. Susanna had brought more videos and we watched some "Wallace and Grommit", "Cars" and "Aladdin" (Simon called it 'The Genie Movie'). Susanna went home and she planned to bring Ethan, Charlie, and Sophia to Simon's room for dinner. Simon ate well during the day ... again I had hope that he was doing better.
During the afternoon, I could tell that Simon was getting bored - watching videos gets tiresome after a while. Unfortunately, he was either asleep on morphine, or awake in discomfort while just sitting in bed. Even with continuous morphine via an IV, Simon was unable to even adjust himself in bed without some pain. He, however, could fully move his arms and did some puzzles. I decided to try to take Simon to the Children's wing play room. I had to get help from a nurse due to his catheter and IV that was providing morphine. I got the wheel chair into his room, and as Simon has said in the past he goes "I'll do it! I'll get into the wheelchair". Of course, he could not and he was very upset that he could not do it. I managed with the nurses help to get him into the chair, but both the nurse and I were in tears. The playroom was not much better ... Simon was very depressed that he could not play with many of the toys. His voice was very weak so he pointed with his finger to places where he wanted to go ... but was saddened by his inability to play. We went back to the room.
Simon had not moved his legs all day, and I was never sure if he even had feeling in them. We had lots of time, so I spent some time just keeping his legs still moving. I thought if we could control the tumor swelling, I needed to keep his legs in shape so that he could walk again. I bent and straightened both his legs for about 15 minutes each, and periodically continued to do so. I had very little else to do.
Susanna, Ethan and the twins arrived for dinner. Ethan brought Simon some of his puzzles and Simon was still unhappy but concentrated on the puzzles some. We brought the babies over to Simon and had dinner together in a subdued mood. Ethan interacted some with Simon, but Simon was still discouraged. Everyone though said goodbye to Simon and left us.
At this point, I am personally distressed, not sure if Simon would ever leave the hospital and thinking twice about whether he should really try 4 weeks of radiation, given the terminal nature of both the returned Pontine Glioma as well as the new spinal tumor. How much time and with what quality would we really be getting? He was sleepy at 11:00 but pointed to the counter and hoarsely whispered "I want my stuffed animals". I handed the three animals to him and as I lay on the coach at his feet, I waved to Simon. He waved back to me, and I believe smiled as he went to sleep. I remember seeing the clock at 11:00 and thought well at least both Simon and I will get a full night of sleep.
Saturday October 13, 2007
At 1:00 A.M., a nurse woke me frantically saying Simon was breathing very heavily, with a rasp and his oxygen count was dangerously low. She had me hold on oxygen mask on his head and paged the doctor and said we perhaps need to send him to ICU. They wheeled in an x-ray machine into his room to examine Simon's chest - his lungs were filling with fluid. They gave him some medicine through his IV to reduce the fluids, but the medicine was ineffective. The nurse then mentioned he probably needs to go to ICU and left for a few minutes.
I will think about this a lot for all my life, but I believe my mind (despite almost no sleep in 48 hours), became very clear. While the nurse left, I began to tell Simon that he could leave. He no longer had to fight and that he could go and see my grandma Betty (I had been talking to him about Betty for a few weeks now, letting him know that people were waiting for him (in heaven that is)). As the nurses were in an out frequently, I continued this one-way conversation with Simon when the nurses were gone. I was afraid what that the nurses would overhear me.
The nurse came back after I think checking with ICU. I told her that we haven't spoken to anyone yet, but I don't think I want Simon to go to ICU and want to stop any extraordinary effort. To my relief, the nurse sat down and said with great sympathy (and I believe relief almost as if she was waiting for me to say this), "I am so glad that you told me that. I will call the doctor and tell her your wishes. She will want to come down and speak to you." Note: since we had up to just two days ago been receiving treatment at Duke, we had almost no contact with any doctors in Charlotte and no contact with the pediatric oncologists on call that night.
I called Susanna, actually got our answering machine as she was given Charlie a late night feeding and told her she should come down. She called our neighbor Melissa who came over to watch our kids and she drove to the hospital.
As Susanna drove, the nurses were clear to me that if we did not take Simon to ICU soon, he would die. I responded - "I am comfortable here".
The last few hours
As a reader of this will note, most of this is written by me - Simon's dad. This description of the last few hours are in Susanna's words. While I spent most of the time with the doctor's and hospital, Susanna was taken care of our older son Ethan and the new twins (Charlie and Sophia) who were born 2 days after Simon was diagnosed. Although family and friends did help, Susanna was committed to breastfeeding the twins and we did not want Ethan to be without one of his parents. Although the parent who is at the hospital has many challenges, I think the parent who is not there probably has it worse by not knowing the details and in Susanna's case trying to care for 3 young children -- two of which were babies. Susanna did many great things for Simon during the treatment; for example, when Simon and I returned each day from Duke after radiation, we would call Susanna about 10 miles from home and she would make Simon his favorite lunch - grilled cheese - so it would be ready when he walked through the door. Simon, of course, loved his mommy.
Although I knew the dictionary definition of vigil, I did not fully understood that word until this day when Susanna and I stayed at Simon's side for ~12 straight hours. Susanna will describe the rest.
I was just putting Charlie back in his crib after a late night feeding, when the phone rang. I remember thinking that this couldn’t be good. No good phone calls come at 2 in the morning. I never even checked the answering machine, I just called Jeff back. I knew that it had to be him. As I dialed I began to shake.
When Jeff told me that Simon’s lungs were filled with fluid, I was stunned. I wasn’t expecting that; but then again all of this was uncharted territory. Jeff and I briefly talked about whether to put him in the ICU and put Simon on a ventilator. I wanted to wait until I got to the hospital before we made any rash decisions. I hoped that I just wasn’t understanding the situation correctly.
As I waited for Melissa to arrive at the house, I ran around the house getting things ready for Charlie and Sophia, not knowing when I would be home next. I kept thinking over and over, I’m not ready for this, please let it be a mistake.
The drive down to Presbyterian in the middle of the night was terrifying, and to make matters worse I got off at the wrong exit and ended up at Charlotte Medical Center. I was so flustered that I had lost my bearings. After what seemed like an eternity (although only about 5 minutes at most), I found a street that I recognized. Once at the hospital I ran in, not knowing if I was too late.
When I got into the room, I saw Jeff sitting beside Simon. Simon’s breathing was very labored and raspy. It was a struggle for him to get a breath. His eyes were closed, but he seemed somewhat aware of Jeff and I holding his hands. It was apparent that he would not be able to breathe on his own. My fears were realized. It wasn’t an exaggeration. If we opted for extreme measures, I wondered whether Simon would ever make it off of them. What kind of life would that be for an active 4 year old boy? Not able to breathe on his own, can’t move his legs, and needing high doses of Morphine to sleep or even make it through the day.
Shortly after I arrived Dr. Bryant came in. She prescribed more Morphine and Ativan to relieve pain and anxiety. We wanted to make him comfortable. If needed, we could push a button and additional morphine would be administered into his IV. Dr. Bryant had a phenomenal presence and a comforting bedside manner. We were truly fortunate that she was the doctor on call.
This was the point of no return. Although we weren’t prepared for the suddenness of this, both Jeff and I were in agreement that we did not want our son on life support. We knew that radiation was no longer an option. This meant that the spinal tumor would continue to grow and impact more of his life functions. Life support would only prolong the inevitable. And at what cost to Simon? Constant pain, stuck in a hospital bed, and basically unaware of his surroundings due to high doses of Morphine.
The Morphine and Ativan calmed Simon, he no longer struggled so much to get his breath. Although his breathing was still labored and raspy, Simon did not seem to mind. Over and over, Jeff and I kept telling Simon how much we loved him, how proud we were of him. We wanted him to know that he fought this tumor so bravely, but that he did not need to fight anymore. Jeff and I both gave Simon permission to leave if he wanted to. We talked with him about Jeff’s grandmother, Betty, and my grandfather, Howard and how they would adore Simon. Both Howard and Betty were doers, never resting, always working on some project. So much like Simon. We also wanted to reassure Simon that there was nothing to fear. We had not prepared Simon for this, although in hindsight perhaps that is best. What is there to say to a young child to explain death?
I know Simon heard some of this, for after we talked he seemed to go even deeper into his sleep. When we stroked his face, rubbed his arms, and spoke to him; there was no response. The Morphine and Ativan had fully relaxed him and Simon felt no pain for the first time in several days.
Over the next few hours, Jeff and I kept a constant vigil at Simon’s side, afraid to even get up to go to the bathroom. We feared that every breath may be his last, yet also hoping for this to give him a relief from his tortured body.
As the sun was rising, I recalled a morning 4 years and almost 8 months previous, when I was in labor with Simon. Simon was born at 6:25 in the morning. I remember watching the sun rise, feeling wave after wave of contractions. That was a day full of hope and expectation. I knew that the pain I was feeling would not be without benefit, as I expectantly waited for Simon to make his arrival. Now the pain I was feeling at that moment was just beginning. However, Simon’s pain was ending.
By midmorning we could see a dramatic change in Simon’s status. His temperature rose, his body was hot to the touch. He did not react when we touched him or sang to him. We could feel him letting go. There was not a dramatic moment, just a gradual drifting, a peaceful start to his journey
Around noontime, when Dr. Bryant checked on us, she told us that Simon’s brain was shutting down. Only basic bodily functions were being performed, which ironically is controlled by the brain stem. Dr. Bryant said that his breathing would slow and would eventually just stop. After she said this, I remember feeling a sense of relief; that Simon had passed away without pain with Jeff and I by his side. We were so proud of how brave he was.
We asked the doctor about whether Simon could donate his organs. We liked the idea of Simon continuing to help others after he was gone. Unfortunately due to the diagnosis of cancer, Simon’s organs could not be used. However, his eyes could be donated. We decided that this was a fitting tribute, since this is where Simon’s brave battle against cancer began.
Over the next hour Simon’s breathing became softer and shallower. He serenely slept while his body was shutting down. At 1:50 Simon took his last breath. Jeff and I felt such relief to know that Simon was at peace.
In the surreal moments that followed, Jeff and I said our goodbyes to Simon. We told him how loved he was and what a blessing it was to have him for those too short 4 years. Jeff and I hugged and kissed his still warm body. We took him out of his hospital gown and dressed him in his favorite shirt. We then alerted the doctor and she performed one last check of his vital signs.
Dr. Bryant told us repeatedly how beautiful and sweet Simon looked. His gentle and loving spirit was apparent even in death.
Other Simon Memories
This section is in no particular order, but are memories of Simon that I want to save for his brothers and sisters when they are older.
The video, of course, shows Simon riding off his motorcycle which he both loved, but I think also near the end he rode as it was more comfortable than walking. He always wanted to race daddy, Ethan and the neighbors. Our new neighbors had a young girl - age 4-5 - and an older boy Andrew age 14-15. He asked to race them, and Andrew was so nice to let Simon win. Later, Simon saw Andrew's dad (who does look young but not 14-15) and told him 'I beat your brother in a race!'. Of course, Andrew was his son and not his brother.
Simon was very excited about the babies. Once, we were at the pool during the time he was getting radiation treatment and saw a pregnant women getting into the pool. He runs up to her and goes 'You have one baby, we have 2 babies!'. He enjoyed feeding the babies (we have some pictures and video of it) and also helped daddy put together their cribs when Charlie and Sophia graduated from their bassinets. As Charlie or Sophia did something, he would squeal in delight and yell. 'Charlie/Sophia is crawling!' or whatever they were doing.
While Simon slepted a few hours before his death, I heard a baby crying next door. We were in children's ward which really for 95% of that patients is the maternity ward. It was beautiful to hear life as Simon passed into the next. Perhaps this was re-incarnation?
Every visit to the doctors, when the nurse would take blood from Simon they would offer him some stickers. Simon would diligently always take two stickers - one for himself and one for Ethan. He would carry those back with him in the car and give Ethan his sticker when Ethan came home from school.
Diary History
Feb 22-07 (4th birthday)