April 29th 2004 - October 27th 2011
This is a full account of Christopher's journey with brain cancer written by his father.
How it all started
Chris was a normal happy 6 year old boy, into Lego, Karate and Cub Scouts. He lived most of his life in Sellersville, Bucks County, Pennsylvania, USA. He was doing well in school and loved to draw dragons. He never got sick and only visited the doctors for his yearly wellness visits. On Sunday January 16th, 2011 at around 7pm, after being perfectly normal and active all day, Chris was watching a movie with his dad in the "Man Cave" when he started laughing for no apparent reason. When asked why he was laughing, he said "My arm's gone all floppy". He stood up and fell over and said his leg had gone floppy as well. His dad sat him down thinking his arm and leg were numb from lying on them, but when they did not improve after a few minutes, he started to think there was more to this. He checked the size of Chris' pupils and looked for any changes in facial symmetry thinking it might be a stroke, but everything seemed fine apart from his right arm and right leg. His parents then drove him straight to the E.R. at Grandview Hospital. The doctors also suspected a stroke and did a C.T. scan which they said was clear. The doctors decided Chris should be transferred immediately to the Children's Hospital of Philadelphia (CHOP).
The first visit to CHOP
On arrival at CHOP, there was a lot of paperwork and a lot of doctors came to see Chris. Shortly after midnight one of the doctors took Chris' parents to one of those quiet rooms you see on TV medical dramas - soft lighting, fake flowers and boxes of tissues everywhere. The doctors had been looking at the C.T. scan from Grandview and had identified a large mass in Chris' brain that somehow the Grandview doctors had managed to miss (apparently tumors don't show up all that well on a C.T. scan). The doctor told them it was a large tumor and that it was inoperable due to its location close to the brain stem. This was the last thing they were expecting to hear and the use of the word "inoperable" was terrifying. This was the first of many occasions where his parents had to hold back the tears and stay positive in front of Chris despite the terror and despair they felt in their hearts.
Chris was admitted to the Pediatric Intensive Care Unit (PICU) at CHOP at around 2am on the 17th. He was hooked up to monitors and a saline drip. Nurses would come in to check on him every half an hour, so no one got any sleep that night. In the morning a large team of doctors came by to see Chris. They put him on a high dose of steroids and scheduled an MRI. The steroids would reduce the swelling around the tumor and ease the pressure on the area of brain controlling Chris' arm and leg. The MRI showed a tumor the size of a walnut in an area of the brain stem known as the mid brain and extending down into an area known as the pons. Chris' case was assigned to Dr. Peter Phillips who remained Chris' doctor until the end. Dr. Phillips called for a biopsy to be taken. Under general anesthetic a long needle was inserted through the skull and through the brain to where the tumor was and a tiny sample was taken.
During all of this Chris remained in good spirits despite the IV's being placed in his left arm. This meant he had difficulty using either arm, one was partially paralyzed and the other had a temporary cast to protect the IV. He was moved from the PICU to the oncology ward which was much more comfortable for everyone - a bigger room, quieter and less visits from the nurses. On waking up the first morning in the new room, he found a dragon picture made from construction paper taped to the door. He was delighted, but no-one remembers mentioning dragons to the nurses and they never found out who put it there. Chris' Scout Pack heard of his plight and one of the Den leaders who happened to work at CHOP delivered a large basket of toys and Play Station games. By this time the steroids had started to take effect and Chris was starting to get some use back in his arm and leg. The physio therapists came and fitted him with a plastic brace for his ankle to hold his foot in place while he walked. Now he was mobile again and able to race his remote control car around the hallways.
The biopsy results came back indicating that Chris' tumor was an Anaplastic Astrocytoma. Tumors are graded 1-4 with 1 & 2 being classed as benign and 3 & 4 as malignant. The determination of the grade is based on how fast the tumor cells replicate and Chris' was diagnosed as 2 borderline 3. Because the tumor was in an area that could not be operated on, Dr. Phillips decided to treat the tumor as malignant and hit it with everything available which meant radiation and chemotherapy. Radiation can be very damaging to a child's brain and because of the location of Chris' tumor it would be necessary for the radiation beam to pass through healthy parts of the brain which could cause cognitive problems and quite possibly hearing loss. Dr. Phillips recommended that Chris be given Proton Radiation. This form of radiation is more targeted and does much less damage to the tissue it passes through on its way to the tumor. There are only 5 hospitals in the country that have proton therapy and can handle children. The University of Pennsylvania Hospital is one of them and shares its proton center with CHOP. At one point it looked like they would not be able to fit Chris in to their busy schedule and that he would have to travel to Texas or Florida. Luckily they managed to move things around in their schedule and fit him in, much to the relief of everyone involved.
The first couple of times Chris had an IV inserted, he was very brave and made little or no fuss. One night, around midnight, they decided to change his IV because they could no longer draw blood from the old one. He screamed when the new IV was placed and continued to cry long after. Chris' parents called the nurse back to check the IV and she said it was fine and that he was making a fuss over nothing. Eventually, he went to sleep. When he woke in the morning his arm was 3 times its normal thickness from his shoulder down to his hand. The IV had not been placed in the vein and the saline was being pumped into his arm. From this point on Chris became terrified of needles. Because his treatment would require so many injections it is standard practice to insert a "port". This is a device placed in the upper chest just under the skin which has a small tube leading to an artery in the neck. A needle can be inserted through the skin into the port and can remain in place for several days at a time. The process of inserting the needle is referred to as "accessing the port" and is nearly painless.
The kindness of others
It was during this first stay at CHOP that Chris and his family started to realize what a wonderful supportive community they lived in and how much volunteers contribute to make children's time in hospital as pleasant as possible. Many people visited or sent cards and gifts. After getting back to the room after a scan or physio therapy there would often be something new in the room such as a sports themed pillow case or a quilted blanket provided by volunteers. As previously mentioned, the scouts sent a large basket of toys and they started organizing a rota to provide meals for when the family got home as did the karate school. Chris' karate teachers came to visit and brought a "Build-a-bear" dressed in a karate uniform. This was the first time the word "Spirit" was associated with Chris' fight and has since been used any time Chris' name has been used. It is also the name Chris later gave his dog.
On the day Chris got sick he had been working on his Pinewood Derby car with his dad. The derby was going to be the weekend after Chris got out of the hospital and there wasn't going to be enough time to finish it. The Scout Master offered to take Chris' car and finish it for him - what a wonderful gesture.
The return home
After 10 days at CHOP, the steroids had started working and Chris had regained a lot of use of his arm and leg. He was able to walk with the aid of a gait belt and his brace and could do some basic things with his right arm again. Luckily Chris was left handed and so was still able to do most things. One of the side effects of large doses of steroids is weight gain. Chris had ballooned in the short time he had spent at CHOP and would continue to do so. Now his difficulty walking was compounded by his weight gain. At home, his bed was dismantled and the mattress placed on the floor so that he would be able to get in and out of bed easily. Getting up and down stairs was a challenge and he often had to be carried by one of his parents. At this point no one could really say if his motor skills would improve.
Chris was attending a small Catholic grade school at the time and they had no facilities for disabled children - no ramps or elevators - so Chris' parents started looking for tutoring services so that he could continue his education while going through treatment and until he was able to return to school. The local school district was
no help at all and ultimately, Chris' first grade teacher undertook to prepare work for him each week that he was able to do at home or in the hospital. As with most children and their parents, there was battle to get the work done each week, but at the end of the school year Chris passed with flying colors.
The Pinewood Derby
As previously mentioned Chris had been working hard on his Pinewood Derby car prior to getting sick and the Scout Master and his sons finished the car for him. Chris really wanted to be there to see his car race. He dressed in his class A uniform and had his leg brace on and was so excited. Everyone gave him the warmest welcome when he arrived. Even though he was having trouble walking, he managed to load his car onto the track and then walk down to the finish line to see it race. Chris' car came second and he received a trophy. He carried that trophy around for days after. He would even be clutching it while sitting on the toilet!
Before the proton therapy could begin it was necessary to precisely map the tumor and prepare a detailed treatment plan that would be programmed in to the proton machine. For this to work, the head must be in exactly the same position each time the radiation is administered, they do this by making a face mask that fits tightly over the face and attaches to the treatment table. Once the mask was made and all the measurements taken, there was to be a two week break before treatment began in order to prepare the treatment plan. The two week break from the hospital gave everyone the chance to relax a little and catch up on some sleep, but Chris' parents were anxious to get the treatment started.
Proton Day 1
The heaviest snow fall of the year was forecast for the first day of proton treatment and so the family decided to spend the night in a hotel in Philadelphia to ensure they would be able to get to the proton center in time for the appointment. This was an adventure for Chris. The hotel had a gift shop and Chris found a small stuffed toy wolf that he named "Wolfy" - they would be inseparable to the end. The snow was heavy and it was a wise decision to stay near the hospital. On arrival at the proton center each day, they would be greeted by the receptionist and each day Chris would pretend to be shy and hide. The proton center has four rooms for use by CHOP patients. Children under 8 or 9 years old require anesthetic during treatment as most of them would not be able to handle having their head fixed to the table with the mask. The new children get treatment last each day and because of the anesthetic they are not allowed to eat before hand. This, coupled with the steroids which made him ravenously hungry, made Chris rather cranky. When his turn came, he was introduced to Dr. Joe who would administer the propofol and put him to sleep. Once asleep, the nurses wheeled him away. He soon came back; he had put on so much weight during the two weeks since the mask was made that it no longer fitted. The technicians wanted to make a new mask and redo the treatment plan. This would have meant another two weeks before treatment could begin. In the end they decided to try and adapt the original mask so that there would be no further delay in treatment.
Daily Radiation Treatment
The treatment plan called for 6 weeks of radiation Monday through Friday with weekends off. It would not be practical to drive down to the hospital every day, so Chris and his mother stayed with family in Philadelphia for the first four weeks and the Ronald McDonald House for the last two. The daily ritual would be to arrive an hour before the treatment was scheduled and spend a little time in the waiting area until the room was ready. Once in the room it was time to change into his black skull bath robe and start answering all the questions about which drugs he had taken since the day before. If it was a Monday, there was the additional task of accessing his port - it was de-accessed each weekend so that he could have a proper bath and be more comfortable. Once all the questions were answered there was nothing to do but wait. It was very rare to get into treatment on time and so Chris' parents had a variety of things for Chris to do such as Lego models, games on the iPad, drawing etc. Every day without fail, Chris' teacher and his first grade class mates would phone and sing to him. They would be put on speaker phone and would draw in anyone in the vicinity to listen. Chris would often join in with the singing and do the hand movements.
At first Chris would growl at the nurses and his mood would change for the worse as soon as they entered the room, but as the days went by he warmed up to them. The Child Life person in the proton center was Ally; she was there to find fun things for the kids to do while they were waiting for their treatment. At first Chris would not talk to her at all, but she persisted and found a Lego model for him to build - that was the turning point for their relationship and they became firm friends after that.
Chris was fascinated by the anesthetic. They used propofol which is a white liquid that was administered via his port. He referred to it as the "Milk Medicine". Dr. Joe would let Chris squeeze the syringe and put himself to sleep. As the drug went in, it would make Chris' face itchy and he would rub it with his favorite blanket (Daddy Cuddly) and then he would say goodnight. Many times he would tell the nurses that he would fight the drug and stay awake, but he never managed it. After going to sleep, Chris would be wheeled off for treatment and whichever members of the family were with him that day could go down to the restaurant and get a coffee and something to eat. He would be gone for around 45 minutes.
On return from treatment Chris would still be asleep from the anesthetic and would take up to an hour to wake up. When he did wake up he would be starving hungry and the first words out of his mouth would always be a demand for food. Some days he would have cereal, others rolled up slices of salami an cheese.
The afternoons after treatment would be filled with school work and sometimes there would be a visit to one of the Philadelphia museums - Chris loved museums, especially science and natural history ones.
One weekend during radiation, Chris' Karate teacher, Sensei Barbara came to the house to give him a private lesson. She surprised him by presenting him with his Ninja Black Belt. The look of surprise and absolute delight on his face will be remembered by all who saw it.
The last two weeks of radiation treatment, the family stayed at the Philadelphia Ronald McDonald House. Chris loved this place. On arrival, they have a basket of toys and children are allowed to pick one. The food is all prepared by volunteers and every night someone comes in to entertain the children. Chris saw a clown, a therapy dog, a musician and more. Chris donated all the toys from his seventh birthday to the Ronald McDonald House. This is a wonderful charity and provides much needed help for families who have to travel long distances for treatment.
Ring the bell
When a patient completes their course of radiation treatment they are allowed to ring the bell. The bell is a large brass ships bell in the waiting room of the proton center. Additionally children get to bang a gong. After 6 long weeks, Chris got his turn to ring the bell. When he awoke from the anesthetic on the last day, the room had been decorated with posters and streamers. Several of the hospital staff stopped by with gifts for Chris which was extremely kind of them and was an indication of how he had won their hearts over the preceding weeks.
After the radiation
Chris had come through the radiation treatment very well. He had lost a patch of hair over his left ear and had developed an allergy to ChloraPrep (the chemical used to clean the skin before accessing the port) and he had gained a lot of weight from the steroids, but all in all things were looking pretty good. Chris could walk without the leg brace and had regained use of his right arm; there was a tremor in his arm but he was able to build Lego models and that was the most important thing! At this stage no-one could say if the radiation treatment had been successful - the effects of the radiation continue to act on the brain for up to six weeks after the end of treatment. An MRI was scheduled for four weeks after treatment and the doctors warned that it might show the tumor as being bigger than before treatment started. This proved to be the case, although the scan did show that the bulk of the tumor was either dead or dying tissue surrounded by tissue producing a watery substance (think of a bad case of sunburn and you get the picture).
The family had no way to know what the ultimate outcome was going to be, although the statistics were not in Chris' favor, so they decided to make the most of the summer. Family members were told that if they wanted to visit, they should do it sooner rather than later just in case and make the most of the healthy time. Chris' brother from England came to visit at Easter and in the summer and they spent a lot of quality time together.
Back to school
The Monday after radiation finished, Chris went back to school. He was welcomed like a hero and everyone wanted to look after him. While he had been away, a toy monkey had occupied his chair. There is a charity called Monkey In My Chair that provides a monkey to take the place of a child at school while they are away for treatment. The classmates take the monkey everywhere they go - to the playground, to lunch etc etc. It is an excellent way to stay connected to the patient.
There was to be a one month gap between the end of radiation and chemotherapy starting. The doctors were also now weening Chris off of the steroids as they should no longer be required to control the swelling around the tumor. Finally he would start to loose all the extra weight they had caused him to gain.
Easter fell between the end of radiation and the beginning of chemo therapy. Chris' big brother, Jamie, came to visit during his Easter break from university in England. Chris really enjoyed building Lego models with Jamie and playing video games together. During one of the weekends, the family went to stay at a relatives shore house in Sea Isle City on the Jersey Shore. It was great time to relax and unwind after the nonstop hospital visits. Chris enjoyed collecting sea shells and look for crabs in the rocks along the shore line. Another high point for Chris was watching Jamie play guitar hero on the board walk in Wildwood.
In this video you will see Chris doing his Karate workout to Viva La Vida from Coldplay. Any time Chris' parents hear this song now it makes them cry.
Whilst at the shore they also visited Atlantic City and saw the Aquarium and board walk. Chris liked the Hard Rock Cafe and bought nice pair of drum sticks from the gift shop. Chris has always really enjoyed aquariums and particularly enjoyed this one.
While no one forgot about the difficult times they knew were coming, they managed to put it to the back of their minds and really enjoyed a normal family vacation together.
The following weekend was Easter and time for another annual favorite, the family Easter Egg Hunt. This is one of the few times each year the whole family gets together and Chris really enjoyed the Easter Egg Hunt with all his cousins. Despite being early in the year, it was a beautiful warm sunny day.
Chris' birthday was April 29th and he chose to invite all his friends to Pump It Up - one of those warehouses full of inflatable activities. He never became spoiled despite receiving so many gifts during the previous months and in many ways felt guilty about it. When it came time for his birthday he decided he didn't need any more toys and he wanted to donate his presents to the Ronald McDonald house. He did however reserve the right to keep a present if it was something he particularly wanted. The birthday cake was donated by the charity Icing Smiles who make special cakes for sick children; Chris' was in the shape of Lego bricks.
There was one gift that Chris had wanted for a long time, but his Dad was not easy to convince - a Black Labrador puppy. Having watched the strength, courage and determination that Chris showed as he went through the radiation treatment, his Dad could no longer refuse him. Some weeks before his birthday, Chis visited a breeder and chose a small quiet female puppy, but she was too young to be separated from her mother. She would be just the right age around Chris' birthday. When the family went to pick her up she was no longer little and has subsequently grown into a very large, very boisterous dog. The obvious name for her was "Spirit". The two were inseparable until the end. Spirit is now the foundation's mascot and appears in the logo.
The thought of chemo therapy was almost worse than the radiation. At clinic there were so many children who had lost their hair, were very thin, tired and listless and everyone wondered if this would be in Chris' future. Dr. Phillips decided Chris should be put on three chemo drugs, Temozolomide, Bevacizumab and Irinotecan. The first of these, Temozolomide (Temodar) was taken in capsule form; the capsule was yellow and black and Chris referred to them as the Bumble Bee pills (referring to the yellow and black car in the Transformers movie, not the insect). This drug is designed to damage the DNA and trigger the death of tumor cells. The second drug, Bevacizumab (Avastin), inhibits the growth of blood vessels (all blood vessels) but because tumors grow rapidly, it impedes their growth the most. This drug could be particularly dangerous if Chris were to be injured as the normal healing process would be suppressed. The third drug, Irinotecan, is another drug that interferes with the DNA in tumor cells, but it also has a lot of side effects - more on those later.
Chris was to take Temodar on days 1-5 of a 28 day cycle and the Avastin and Irinotecan would be administered on day 1 and day 14. Avastin and Irinotecan are both liquids administered intravenously over several hours and so this would require spending one day every two weeks down at CHOP. When asked how long Chris would have to take these drugs for, the answer was "For as long as he can tolerate them, or until they appear not to be doing anything beneficial". It was explained that he might be on them for up to two years.
To go along with the three primary drugs there would also be a whole selection of other drugs to control the side effects. Chris' mom would now begin carrying a mini pharmacy everywhere they went.
Clinic days were on Tuesdays, every other week. The family would normally leave the house around 7am in order to be at CHOP around 9am. The first few visits, Chris was not at all anxious, but the anxiety grew to the point where he would vomit on the way to the hospital or on arrival. The clinical term for this is "Anticipatory Vomiting". Most times he would occupy himself on the car journey with his Nintendo DS, or the iPad. On arrival at clinic, Chris' mom would fill out the paperwork to check him in, and his dad would take him to the bathroom to produce a urine sample and to apply numbing cream to his port.
Once checked in, Chris would go back to the play area where Miss Meghan would find activities for the children to do while they waited. Often this would be an art project and Chris would usually draw dragons. One particularly fine specimen was chosen to be framed and hung in the children's art gallery at CHOP. After being there a short while, Chris would be called to "Triage" where his weight, blood pressure, temperature and height would be recorded. Then it would be back to the play area for a while. Next he would be called by a nurse to have his port accessed. There was no part of this procedure that he enjoyed; he didn't like the smell of the cleaning solution and he didn't like the feeling of pressure when the needle was pushed into the port. The numbing cream ensured he didn't actually feel the needle penetrate the skin. He would rate the nurses on a scale of 1 to 10 based on their ability to access his port quickly and painlessly. Only one nurse ever scored 10, Marla, Dr. Phillips' nurse, but unfortunately she was not always available.
Once the port was accessed, they would take a blood sample and send it off to get his white cell counts. On a couple of occasions, Chris hand delivered his own specimen to the lab. The staff there were very pleased to show Chris around and to show him what blood looks like under a microscope - he was fascinated. The goal was to have an ANC (Absolute Neutrophil Count) higher than 1000; below this number, they would not give him chemo therapy as his immunity against infection would be too low and the chemo would lower it further.
After the port access and blood test, it was back to the play area until the doctor was ready to see Chris. When called by the doctor, Chris and the family would go back to the doctors room where he/she would perform a neurological function test. This would involved testing muscle strength over a range of movements and comparing the left and right sides of the body. It would also involve following the doctors finger with his eyes, walking a straight line on his heals and then on his toes. There would be a discussion of any side effects or complications since the last treatment and any adjustments in dose or prescriptions would be made. The doctor would then order the chemo and Chris was free to go back to the play area.
This was Chris' favorite part of the day. He would usually go out to the waiting room where Mr. Mike, the music therapist, would be with all his instruments. Chris loved playing the instruments - a drum kit, electric guitar, keyboard, tambourine and various strange percussion instruments no-one knew the name of. His favorite was the electric guitar; Mr. Mike would tune it so that it would play a cord without needing to use the fret board. On several occasions Chris would get called away shortly after starting to play and sometimes Mr. Mike would go and find Chris in the Day Hospital and have a one on one jam session with him.
The Day Hospital
After clinic and jamming with Mr. Mike the music therapist, it was off to the day hospital to receive the chemotherapy. This part would take around 3 hours to complete and by the end of it Chris was usually tired and throwing up. Each bay in the day hospital contained a large reclining armchair, a TV, a guest chair or two, a mobile pole with the infusion pumps on it and a standard hospital pull around curtain for privacy. The first thing was to get hooked up to the infusion pump and over the course of around 30 minutes he would receive a cocktail of drugs to help with the nausea and vomiting that was to come. This cocktail changed nearly every visit until finally they found a combination that actually seemed to improve the situation. Once hooked up, the children are able to get up and move around but they have to take the pole with them. Chris usually stayed put unless he needed the bathroom.
There were a couple of occasions when Chris went to the play area because Miss Meghan had a special activity for him. She would fill a surgical glove with pink colored water and Chris would practice inserting an IV needle into the glove and draw "blood" samples from it. More often, Chris would occupy his time with building Lego, playing with his electronic circuits kit or playing a game on the iPad. Often he would have to wear his mom's glasses (neck chain and all) because the anti-anxiety medicine would make his vision blurry.
Next up was the first of the chemo drugs, Avastin. Initially this was administered over one and a half hours, but once it was established that it did not cause a drop in blood pressure, the time was reduced to half an hour. Avastin never caused Chris any problems. Each course of drugs was followed by saline to flush out the lines and ensure all the drugs had been infused; this would add 15 to 20 minutes after each of the 3 courses.
Finally came the Irinotecan - this gave Chris the most trouble. Almost as soon as it started to go in he would start salivating and needing to spit into a bowl - this would go on for hours afterwards. The last thing before discharge was to have his port de-accessed. Part of this involved flushing the port with Heparin to prevent clots in the line; this would give Chris a metallic taste in his mouth and would usually make him throw up. There were a few occasions where he would throw up every 30 minutes from the end of treatment up until 11 or 12pm that night. On one of these occasions Chris uttered the heart breaking phrase "This is the worst day of my life".
In the last few treatments before his death, they realized that it was not nausia or anxiety that was causing the vomiting, but all the secretions that he was swallowing. Once they gave him drugs to dry up the secretions and an anti histamine to make him drowsy, chemo days became more tolerable. It was on a chemo day that the east coast earthquake occurred, but Chris missed it because the anti histamine had put him to sleep - he was so disappointed.
Sometimes Chris would go to school the day after chemo, but on several occasions his mom had to go and get him early because he fell asleep at his desk.
Life on chemo
Life on chemo was not too bad for Chris. Chemo days were bad and sometimes the day after, but over all he lived a mostly normal life. Chemo and radiation changed his sense of taste and there were very few things he liked to eat. He would eat bacon and ice cream; two things you would not be happy about your child eating all the time, but Chris was loosing weight and as the doctors said "a calorie is a calorie". It was a constant battle to get him to eat and there was always the threat of a feeding tube up the nose if he lost much more weight.
Chris became very uncomfortable outdoors on hot days - he would sweat a lot and become very distressed. The family had been given tickets to see a Phillies game, but the seats were in full sunlight and he couldn't tolerate the heat.
Chris had been booked in for a summer camp at the Calvary Church in Souderton, but as the time approached, Chris' mom realized he would not be able to play outside and so she phoned to cancel. When the people at the church heard he could not go and the reason why, they decided to bring the event to him. They erected a bounce house in the back yard and bought pizza and soda. There were clowns and children to play with - it was a wonderful gesture from wonderful caring people. Chris was rather overwhelmed and uncomfortable because of the heat.
As the weeks progressed Chris started to become allergic to something he was taking and would break out in hives. It turned out to be the Temodar which he was taking on days 1-5 of the 28 day cycle. The strange thing is that the hives would not appear until day 7, but when they did, they were severe. This reaction was bought under control by taking anti histamine and steroids on days 1-7.
Ironically, they had just got the meds right for two cycles prior to Chris dying. For those two cycles, he did not throw up on chemo day, or the day after and he did not break out in hives.
Another common side effect of chemo is the one people are most aware of, hair loss. Chris' hair did thin out and became quite wiry, but he did not go bald and looked normal. Even the hair over his left ear that was lost during radiation had started to grow back.
In mid September it was time for an MRI to check on the progress of the treatment. This would be the first MRI that was likely to show any improvement in tumor size since treatment began. After going through so much, surely there had to be some improvement - the waiting was excruciating. The results came back and were better than anyone could have hoped for; the tumor had shrunk significantly.
In this picture the left image shows a slice through the brain where the tumor was largest back in April just after radiation was completed. The picture on the right is from a different slice through the brain and shows the largest remaining part of the tumor from the September scan. Dr Phillips was very pleased with the result and used the phrase "Cautiously optimistic" about the future.
For the first time, there was a glimmer of hope and the expectation of several more months with Chris at least. His mom started planning for Christmas.
Chris suffers a setback
On Sunday October 16th the family went to a Fall Festival at the Moravian Tile Works in Doylestown. Chris seemed tired and was stumbling a little, but everyone just thought he was tired. Later the same day Chris went to Karate and seemed to be having trouble balancing, but he made it through the class and seemed otherwise normal. No-one thought "tumor", after all he had just had an MRI that showed a massive improvement.
On the Monday, Chris was sent home from school because he was sleepy and generally not himself. When it was suggested he go to see the doctor he begged not to go. He was booked in for his bi-weekly chemo visit the following day and so it was decided to wait until then.
On the drive down to CHOP on Tuesday morning, Chris seemed tired and was having trouble playing games on his iPad which made him very frustrated. He walked into clinic as usual. When the doctor examined him and did the usual neurological tests, it was clear something was wrong. They decided to skip chemo that week and ordered another MRI to see what was going on. They sent Chris home and organized an MRI at the King of Prussia facility for Wednesday.
On arriving back at home, Chris fell asleep on the couch. He awoke about an hour later and asked for pasta. He also seemed unable to walk at this point. He went back to sleep for a while and this time when he awoke he was unable to move his legs or his arms and could not speak - all he could do was cry. Chris' dad put him in the car and immediately drove down to CHOP. On the way Chris' mom called the doctors and told them he was coming in, hoping that they could fast track him through the ER. This was only partially successful, but eventually Chris was admitted to Intensive Care.
The doctors put Chris back on high doses of steroids and an MRI was ordered but could not be scheduled until late on Wednesday. Chris' grandma had been visiting from England for the previous 4 weeks and was due to fly home on Wednesday. She would have to fly home before the MRI and would have to wait to hear the results. For all but the last couple of days of her visit, Chris had been perfectly normal and it wasn't until this point that she really realized how sick he was. It was hard to know what was going on in Chris' mind; he could cry and he could answer yes/no questions by blinking his eyes. When asked if he was in pain, he said no. When asked if he was scared, he said yes.
During the preceding couple of months, Chris had been spending one-on-one time with his Karate teacher Bruce who had been teaching him the art of meditation. When Bruce visited on that Wednesday Chris was very distressed and crying. He spoke quietly to Chris and they meditated together; Chris calmed down and fell asleep. It was amazing that a seven year old could grasp the concept of meditation and to be able to practice it at such a distressing time.
That evening the doctors and nurses started preparing Chris for the MRI. They decided they would need to insert a breathing tube. Chris' parents stayed with him while they did this. A junior doctor made several attempts to insert the tube and failed. Eventually a more senior doctor took over and was successful. It was very upsetting and difficult to watch.
Chris was wheeled away for what turned out to be his final MRI.
The MRI results
The MRI results did not come back on the Wednesday evening as expected; the family had to wait until Thursday morning. Chris' parents were called to a meeting room with lots of new people in it - this did not look good. The doctors explained that the MRI showed a new and very aggressive tumor had developed in Chris' brain stem. They looked back at the September MRI and could see no evidence of it, so it had developed in just a few weeks.
Because of the location and because Chris was already on chemotherapy when this new tumor developed, the doctors concluded that there was nothing that they could do. Understandably, this news was completely devastating and not what anyone expected after the September MRI. There were so many questions:
- how could this happen so quickly?
- surely something can be done?
- how long does Chris have?
- how will we live without him?
- how do you tell your child he is going to die?
Because of the progression over the preceding few days, the doctors felt that Chris only had one to two weeks to live. It was likely that the tumor would progress and affect his ability to breath.
The new people in the room were representatives of the Palliative Care Team. They asked if the family would like to take Chris home to die in peaceful familiar surroundings. The family said they would like to do that and the team sprang into action to make it happen later that same day.
Chris' parents asked about organ/tissue donation as this is something they had been thinking about since the beginning in case the worst should happen. Unfortunately, hospitals will not take organs from cancer patients because of the risk of spreading the disease to the recipient. They will however take corneas for transplant and tissue for research. It was decided that Chris' brain would be donated for research and it helped to think that he would go to his grave with the cancer removed.
The family managed to make it through the meeting without falling apart, but once it was over the devastating news engulfed them as they realized they were going to loose their precious son and that they would have to start telling people, not least of all Chris himself. Chris' dad started making phone calls to family and friends. It was almost impossible to get the words out and no-one was expecting to get this news so soon after the September MRI.
After the phone calls, Chris' dad paid a visit to the clinic to inform the nurses and Child Life staff that Chris was going home and would not be back. Miss Meghan dropped what she was doing to go and visit Chris. She took a hand molding kit and paint and paper to make hand prints. The doctors, nurses and Child Life staff had all become very fond of Chris and this was very difficult for them too. It is a great testament to them they can continue their work despite so many tragedies like this.
At this point Chris was still aware of his surroundings and could smile, cry and respond by blinking. His parents did not want him to see their distress and did not want people discussing what was going on in front of him. He was asked if he wanted to go home, and of course, he did.
The paper work was completed, hospice care and equipment was arranged for the house and an ambulance was organized to take Chris home.
On arriving back at home the family found a motorized hospital bed in Chris' room, oxygen cylinder, a ventilator, a suction pump and a bewildering array of tubing and fitments. Luckily Chris' aunt Terry was a trained nurse and had volunteered to take care of all his medical needs so that his parent could just be parents. Shortly after getting home, the hospice nurse arrived to introduce herself and provide information on caring for Chris. She also bought some of the drugs he would need. The bulk of the drugs would come from a 24 hour pharmacy that would deliver things at any hour of the day.
Chris was happy to be home and surrounded by his own things - especially his dog Spirit. She would lay on the floor beside his bed for hours.
There were many visitors in the first few days back home; friends from school, his teachers, friends from karate and scouts, a local football team and of course family. Chris could follow people around the room with his eyes and several people that he held dear were rewarded with big smiles.
In the quiet times between visits Chris would watch some of his favorite programs on Netflix on his iPad - a particular favorite was Johnny Test. At other times his dad would read the Percy Jackson book they had been reading together, or carry him down to the basement and sit him on his bean bag chair while playing a game on the Wii. This was something they did together nearly every evening when his dad came home from work.
In this picture you see Chris playing Nintendo DS games with his dad on their matching bean bag chairs only 3 days before his relapse.
Make a Wish
Several months earlier, Chris had been visited by the Make a Wish foundation who wanted to grant him his wish. Chris did not understand the magnitude of the things they could do for him. He was suggesting things like Lego models and a puppy - all things his parents could provide for him. The Make a Wish representative suggested a few things such as meeting a favorite sports person, a Disney trip or a room make over. After thinking about it, Chris decided on the room make over. Ironically he chose this because he wanted something that would last rather than something that would be over in a few days.
A designer came to visit to measure the room and to get ideas. Chris wanted a Dragon and Lego themed room. These were two of his favorite things; he loved everything to do with dragons and they were the subject of most of his drawings; he also loved to build Lego models. Only a week before his relapse he completed the London Tower Bridge model.
Everything for the make over was ordered and the work was scheduled to be done the Saturday after Chris' relapse. His parents had planned to take him out for the day while the work was done so that it would be a surprise when he got home. Because of his condition it was decided that the make over should be limited to the soft furnishings and wall hangings as it would not be possible to paint or lay carpet etc.
When Chris awoke, he saw the giant dragon poster on his wall and dragon cushions and lamp on his bed. He stared at them for a long time and smiled.
Caring for Chris
Over the next few days, the family concentrated on keeping Chris comfortable and on the assumption that he could still see and hear, provide him with entertainment. As before family, friends and the community rallied round to provide food, shoulders to cry on and services. One such service was provided by Sandi, a professional masseuse, who made several visits to give Chris massages - excellent for body and soul. The hospice company also provided a Reiki massage and aroma therapy for Chris.
Over the next few days, the smiles faded and Chris opened his eyes less and less. His gag reflex was diminishing and he was having more and more trouble coughing up anything in his throat or lungs; this required more and more use of the suction tubes. The tumor was also affecting the part of the brain stem that controls body temperature. He was on a number of different drugs for pain (although we do not believe he had any), for the secretions, to keep his fever down, and to keep him calm. No one knows how much he was aware of his surroundings and what was happening to him during those last days and whether or not he was afraid or panicking inside.
It was very difficult to come to terms with the fact that Chris was dying. Most parents have cared for sick children and they look for signs of improvement. Chris' parents did this also - they would see a smile or a faint movement and see it is a positive sign even though they knew there was no hope.
Because they did not feel they would be able to think clearly after Chris' death, his parents decided to start organizing the funeral. A representative from a local funeral home came to visit to start making arrangements. It felt like a betrayal to be discussing the funeral while Chris was alive upstairs in his bedroom.
Someone was with Chris around the clock. During the day someone would be reading to him or listening to music or one of his favorite TV programs. At night there was a rota for sleeping in his room and giving him his medications. No one who slept in his room actually got much sleep, they just lay there listening to every breath and wondering what a future would be like without Chris.
On several occasions, Chris' parents sat with him and tried to explain to him what was happening; that a new tumor had grown; that the doctors could not fix this one and that he was going to be with Jesus and the grandparents he often talked about but never met. He would see his aunt Terry's dog Bobby and the pony he used to ride - Peanut.
It is more often the case with this disease that you get more notice that the treatment has stopped working and Chris' parents had always planned to use that time to explain things to Chris. They did not want to talk of death all the time there was a glimmer of hope. This new tumor grew so quickly that they were robbed of that opportunity.
The Next Place
The hospice nurse gave Chris a beautifully illustrated book entitled "The Next Place" by Warren Hanson and she read it to Chris and the family. Everyone was profoundly moved and there were a great many tears.
The Next Place
The next place that I go
The final hours
On the morning of October 27th, the hospice nurse said that she thought that day might well be the day that Chris would give up the fight and that she thought he might be holding on to hear from someone or for something to be finished. There were two people that Chris held very dear that had not said goodbye and they were both in England; his grandmother, and his beloved brother Jamie. Skype calls were arranged to both using the iPad and both talked to Chris and said goodbye. The only other unfinished thing anyone could think of was the book Chris' dad had been reading to him, so that too was completed.
His parents knelt beside him and told him that it would be OK for him to go and that they would be OK - he was always more concerned with other peoples happiness than his own.
As the day progressed his breathing became more and more erratic and there would be long periods where he would stop breathing completely.
In the late afternoon, Chris' aunt Terry called his parents into the room saying that she thought the time had come. He had not taken a breath for several minutes. His parents placed their hands on his chest and could feel his heart slowing until finally it stopped. They stepped out of the room to tell everyone he had passed, and family and friends who were present started making phone calls.
Several minutes after Chris' heart stopped, he suddenly took a huge breath and his heart restarted. His breathing was more of a spasm, but it was enough to get oxygen into his blood. It may be that this was just a reflex action from his body, or it may just be that he was not ready to go. The hospice nurse arrived and recommended that Chris' parents leave the room in case hearing their voices was causing him to hang on. It is impossible to find the words to describe the pain and feelings of helplessness everyone was experiencing.
Around two hours after Chris' heart first stopped, he took his last breath. His suffering was over and the world lost an amazing young man.
The funeral home was called and they came to collect Chris. He was to be taken down to CHOP one last time to have the tumors removed for research and for his corneas to be donated for transplant.
The funeral was held one week later at Saint Agnes church in Sellersville. The church was full. Chris' brother and grandmother came from England and family and friends from all over the US were there. The scouts provided an honor guard, Chris' second grade class mates all attended and sang. The bearers were four members of his Karate school dressed in their Karate uniforms and Chris' uncles Jim and Ken.
Chris inspired everyone that met him and has continued to inspire people that hear his story. Brain tumors can strike at any time; no one knows what causes them and modern medicine doesn't have an effective way to treat them if they cannot be surgically removed. Treatment has not changed much in the last 30 years - it is basically surgery (if possible), radiation and chemotherapy. Brain tumors in children are different than in adults because their brain is still developing, but not much is known about exactly what the differences are. Even if a child survives a brain tumor, the effects of the radiation and chemotherapy can cause hearing loss, vision loss, learning problems, seizures, growth problems, sterility, secondary tumors and more. There is a possibility that the tumor that killed Chris may have been caused by the radiation. Compared to other types of cancer, research into pediatric brain tumors is tiny. Consider for a moment all the money raised for breast cancer and the dramatic improvement in survival rates that has been achieved.
If you only take away one thing from reading this story, it should be that life is fragile and none of us can predict the future. Love your children; spend time with them; realize how important they are to you and do not take them for granted.
Chris' parents set up the Christopher Court Foundation to raise awareness into this disease and to raise money for research. They would also like to make people aware of the importance of donating tissue for research which is just as important as the money.
Rest in peace Chris, you are sorely missed by so many.